If you beat rosacea let the board know!

[yossarian]

I think from the start the board owners should promote a system where if anybody does manage to put their rosacea into remission, that person should post so that their success is put on the record here.
I've found that when the question of cures/remission arises on a long-running help forum there are sometimes faint references to people who might have had success, but nothing firm. Most people who beat the condition just disappear, and I don't blame them for wanting to put all of this behind them for good, but we need to document these success stories so that they can continue to serve as hope for others for a long time to come.

Perhaps in the future these stories can be contained in a sticky thread at the top. Obviously it's premature to do it now but it's something to consider for the future.

[frank]

I guess you could say I did beat Rosacea. I was diagnosed with it back in early 1995. I was prescribed tetracycline, but it was too strong for my stomach and went on doxycicline. Stayed on it for about 2-3 years and also I was on metrogel, on an "as needed" basis. My rosacea wasn't nearly as bad as some pictures I've seen on Rosacea web sites and magazines. After about 6-7 years with metrogel I noticed that it wasn't really doing anything for my skin. It wasn't helping nor hurting it. So I decided to stop using it and since then have been trying to take a lot of care (pampering ) of my face. I use Linda Sy Zinc Oxide (tinted) and use Oil of Olay Complete at night for moisturising. Also I avoid direct exposure to sunlight, which is very harmful to my face and skin. And I try to drink lots of water to moisturise the skin in general. But most definitely the zinc oxide has given me my confidence back and I no longer fear being out in public, or going to department stores with those huge bright lights. Currently my face is pretty much normal looking, although I do have a small patch of spider vein on my left cheek, not big, but certainly it's there. Is that from the rosacea? I don't know, maybe it's my age.
That's all for now.
Frank

[Peter]

I agree with you that it is a shame we do not have records of success rates with rosacea as it would give many individuals hope that there is light at the end of the tunnel. Not sure how you would collect the data as you say "they just disapear".

I know Geoffrey will disagree with me but I still think there is evidence that for some the condition is self-limiting i.e. it does eventually go away by itself and the trick is to find the correct treatment to keep your skin looking normal in the interim. Unfortunately as we know however the condition for some people quickly becomes so severe and debilitating that it is very difficult for them to get a treatment that halts the progression.

Personally I believe my rosacea is now in remission despite the odd very minor trigger but currently I would not like to tempt fate by stating in public that I have beaten it.

Interesting to see what others think.

Peter

[RedHotCanuck]

Peter,

Good to hear that you have control over your Rosacea. Maybe not cured, but control, which is a start.

I think the rest of the users, including myself, would be interested in how you stuffed your Rosacea into remission.

Regards,
Mike

[yossarian]

Not sure how you would collect the data as you say "they just disapear".

That's what I mean when I say promote a system. There could be a sticky thread (I assume people know what I mean by that) or perhaps a sub-forum called "success stories". At the beginning it would look a bit sad and empty, but it's existence would provoke people to give their tales of success and over time they would build up. With this forum having just started I figured it was a good idea to be active in establishing the things we might wish we had a year or maybe five years into the future.
Perhaps minor successes, such as a new treatment having a positive effect, could be included. People talk about what treatments they want to try, but it would be good to know how things worked out for them after the treatment. I know these things often make it into threads but it would be nice to have them all together in one place.
Just a thought.

[Kelli]

I actually like this idea.

I have a hard time trying to decifer (sp?) what works and what doesn't.

[drnase]

Hi Peter,

Great to hear. I truly think that rosacea will never go away by itself (or back to per-rosacea as there is no cure). What usually happens is you actively do something without realizing it which has a postive influence on rosacea BUT more importantly, many go into remission by just unknowingly removing one constant trigger like skin care products, etc.

My mother and my grandma both said to me that yr body runs in 7 year cycles of renewal (or something) and they fully expected my problem to burn itself out as apparantlt my nan had something similar and then it disappeared.

Well 10 years later its still here! :( Why can't parents be right when you actually want them to be!? :wink:

[drnase]

Sally Ann,

Hopefully she was not talking dog years :roll:

[Peter]

Hello Mike

My full story would be a little long for this forum. If you can get into the RSG archives you will find a report I wrote in January 2001 and really that covers it. It is under ACNE LAMP - PETER in the headings.

In brief after taking oral and topical AB's I decided to try the acne lamp and afer a few weeks it was obvious it was helping. That was 7 nearly years ago now and I still use the all red version nearly every day for 15 minutes and also use a small amount of Dalacin T lotion (Clindamycin) morning and night. I took Dixarit (Clonidine) for a couple of years to help keep the flushing attacks I was getting under control.

I changed my soap to Clinique mild and shaving gel to Clinique M shave when wet shaving followed by Aloe vera gel (Aloe99) as an after shave balm. Aloe doesn't work for everybody so do a patch test first. That's all I use on my skin and I stopped using any sun screen as they all irritate.

Hope this helps.


Regarding the success stories (yossarian) yes I think it would be a great idea to set up a sub-heading in the forum where these could be archived for inspiration to others.

Hello Geoffrey

Hope you recovery is going well.

I don't really care whether rosacea goes away or goes into remission providing it never returns. I still think it does fade away in some people provided they get it under control in the first place but we could argue this one for a long time. Certainly until we can discover the cause of the condition we cannot be sure what makes it go into remission. My dermatologist tells me that when he first started practising many years ago he was trained to tell patients that they had rosacea for life and that treatment would have to follow suit. Over the years he has realised this is not the case and he has seen numerous people where their rosacea has disapeared. He is not the type of guy to make things up so lets hope he is right.

Best wishes

Pete

[skipper]

I am in total remission (knock wood) at this time and have been for six months or so. It started with using metro cream, twice a day applied to whole areas affected. Useing a gentle cleanser, Neug. extra gentle cleanser in the white pump container. Also alternately with Rosula (sodium sulfacemide 10% and sulfur 5%) as needed. This is key, they both work well when one or the other becomes ineffective account of yeast or whatever. I also have had photoderm treaments and am currently on 100 mg Mcly, a day now for several years. (I am going to reduce that to 20MG twice a day some time in the future). But the metro cream and rosula was the main thing that put it in remission. I use nothing else on my face period. Hope this helps someone. 8)

[bettina]

I was a research patient for one of the doctors who developed accutane, in the 70's. I was put on prednisone, OCP, then accutane low dose, 2 courses. Voila!

Thought I had beaten it forever. I controlled it with Metrocream for years, but in 2003 it crept back, along with it a dermatitis most mysterious -- leading me to a Monk-like existence trying to find out the cause -- is this an allergy or what?

Finally, after what seemed like a 1 1/2 year long standing appt in the derm office, I am on low dose accutane.

I am hoping that this time it will work, on both the dermatitis and the papules and pustules of rosacea.

Hopefully, this long-termer - me - will be back here with a positive post, saying that "this time it worked". Having been a sufferer now for 35 years, I can say I do NOT believe this is self limiting, unless one wishes to wax philosophical about this in the "all life is transient, nothing stays the same" vein. 35 years seems like a lifetime to me.

[Warren]

Actually there will be a place to write your full story or a journal at this website. I am still looking for a few more people to help test it, please send a private message to me for more info, I am busy at the moment so I might take a while to reply.

[Kathleen Tartar]

I was diagnosed with Rosacea about 3 yrs ago when I had a severe ocular episode followed by rapidly growing facial Flushing and burning. I felt like my cheeks were going to explode
The Doc put me on the usual Metro lotion which seemed to calm things
for a few weeks and then flared up again worse that ever. The ocular was a nightmare to lengthy to get into.
I could not tolerate ANYTHING on my face but cool water and it seemed like everyting I ate set me off. I do believe that the stress from the ocular rosacea made the facial worse. It was 6 months of Hell with an imcompetant Specialist.
I DO feel that i had very mild facial Rosacea for many years before this episode.
After trying several products I started using Plexion and it had given me 99% improvement in my facial Rosacea. I have occasional mild redness and I do mean occasional. I eat & drink almost everything and my face tolerates many things that it wouldn't before. I do try to be careful and not push the envelope to hard.
I think that Dr Nase's book, info from people like you on the internet and trial and error were what gave me hope and help.
The hardest part is trying new things and then you have to give it time before you know if it works or not. I was advised to give a product a 30 day try (unless you have a severe reation) and that can be frustrating.
I am posting all of this because I agree that those of us tha have had some success need to let those who are struggling that its not hopeless.
I use the supplements recommended by Dr Nase along with Hyro Eye
and I use Tinted Zinco as a make-up and sunscreen and Lynda Sy's
Moisture Lotion for Sensitive & Dry Skin. I also take 150 mg of Doxycycline a day.
My eyes are still troublesome but certainly MUCH better than they were.
Sorry to be so long winded.
Ta,Ta!

[Ajay]

Hi It's good to hear there are good results I have been very lucky and caught my Rosacea early which if you can has got to be good.I'v had 4 IPL treatments and a 5th next week which have all but got rid off my rednss and for me more importantly the awfull pain/burning i used to get. I use the supplements recomended in Dr Nases book plus the zincO from linda sy and her oatmeal face wash. I have just had an operation and whilst in hospital the staff were very concerned because I looked so pale!!!! even whilst feeling like sh.t this made me elated. So take heart there is hope.

[Tracie]

Good Topic. I too have my rosacea in remission. To look at me no one would know that I have it. When I first got it 13 years ago, I was covered in papules and pustules from my forehead, down to my chest. Went the antibiotic route and got no where. Now through trial and error with vitamins and such, I am almost rosacea free.
I think one of the biggest things for me is the way I think. I try to keep positive all the time. Extreme stress brought my rosacea on, and I have learned from this. :wink:

[Angelina]

I think there are different types of rosacea and I have very very thin skin. I showed signs of rosacea when I was five years old (got sent home from school because my face had flushed so much I had broken veins and papules!).

Unless I can increase the thickness of my skin I can't see how I'll ever get rid of it. It seems to be abit of a skin type thing for me.

However, I am willing to be disproven!

[karen_breeze]

Hi Tracie, Can I ask what supplements you're taking. Karen

[Tracie]

Hi Karen,
The Supplements I am taking are:

Vitamin C 1000mg
Calcium with Magnesium.Potassium and Zinc
B-50 Complex
Jamieson Multivitamin, Vita-vim

The biggest thing for me is taking an oil called Udo's Oil Blend. I take 2 tablespoons of this everyday. It is a source of Omega 3 and 6 polyunsaturated fatty acids. It contains flax oil, sunflower oil, sesame oil, coconut oil, evening primrose oil, soy lecithin, rice bran and germ oils, oat bran and germ oils, tocotrienols and is certified organic.
I highly recommend this oil to anyone. If you cannot find it then get something as close to it as possible. I buy it at my local health food store. It is very easy to swallow with no taste to it at all. It costs about $18 and lasts me just over 2 months. I have been taking it for about 3 years and have been on the vitamins for about 11 years.
Oh yeah....I also laugh a lot, and don't let the little stresses in life get to me anymore!!
Hope this helps you!
Tracie

[irishgenes]

The biggest thing for me is taking an oil called Udo's Oil Blend. I take 2 tablespoons of this everyday. It is a source of Omega 3 and 6 polyunsaturated fatty acids. It contains flax oil, sunflower oil, sesame oil, coconut oil, evening primrose oil, soy lecithin, rice bran and germ oils, oat bran and germ oils, tocotrienols and is certified organic.
I highly recommend this oil to anyone. Tracie

Consumer Labs tested products which provide Omega 3 & 6 recently, and Udo's Choice Oil and Atkins Essential Oils both failed. Udo's had 74% claimed Omega 3 and Atkins had 79% claimed oleic acid. That wouldn't prevent them from working, but just means that their strength is less than claimed.

[Adam]

irishgenes:

Thanks for your post. I had guessed that Udo's Choice Oil should be the best choice and almost wanted to buy it. Now I can save that money :D

Have a cool weekend.

Adam

The biggest thing for me is taking an oil called Udo's Oil Blend. I take 2 tablespoons of this everyday. It is a source of Omega 3 and 6 polyunsaturated fatty acids. It contains flax oil, sunflower oil, sesame oil, coconut oil, evening primrose oil, soy lecithin, rice bran and germ oils, oat bran and germ oils, tocotrienols and is certified organic.
I highly recommend this oil to anyone. Tracie

Consumer Labs tested products which provide Omega 3 & 6 recently, and Udo's Choice Oil and Atkins Essential Oils both failed. Udo's had 74% claimed Omega 3 and Atkins had 79% claimed oleic acid. That wouldn't prevent them from working, but just means that their strength is less than claimed.

[stranger]

I will try to keep this brief.

Well, I'm 25yo male, I was told by dermo I had rosacea + seb derm 3 years ago. I was also told of the lifestyle changes I would have to make in order to keep this under control. I didn't listen. I continued smoking cigs, marijuana, drinking excessively, and much much more. Until my face became permanently red with bleeding sores pastules papules etc... whatever... It ruined my life, I went from an outgoing, confident uni student, to someone who was afraid to leave my room, quiet, avoiding everything etc... So anyway. Eventually you have to decide to make big big changes.

So far after 1 month on this program my Rosacea is about 90% gone. I will keep everyone updated as to my progress. I think if you catch this thing early, the easier it is to keep in check and cure (yep cure, i think it's possible)

Below are the things I changed in my life.. I mixed it up... took myself out of my physical comfort zone and it's helped alot.

1) I quit drinking alcohol COMPLETELY, rosacea loves alcohol it goes crazy for it. I quit smoking all substances and being in environments where there was excessive smoke. 2) I gave up all medicated products oral antibiotics/topical gels/creams etc.. and only use 100% pure cold pressed Jojoba oil from the seed as my twice, thrice daily moisturiser. 3) Every chance I get I drink purified water and in the mornings I squeeze the juice of one lemon into a litre purified water to begin the day. Also during daylight hours drink plenty of organic green tea (jasmine) etc.. and during the evening drink Rooibos tea (Antioxidents baby) 4) I began Vegetarian/gluten/wheat free diet, meaning no red meat, chicken, pork lamb etcc.. no dairy no eggs and no gluten/wheat and processes sugars. Only fresh baked fish for fatty acids omega 3 etc.. and PLENTY of fresh steamed vegetables lots of the green ones. Eat them for breakfast RAW lots of fibre baby! + seed and nuts.. almonds etc.. almond paste 5) every night I drink my flaxseed oil, every morning I have my daily multivitamins vitamin c sups etc.. 6) I stopped going to the gym and doing heavy workouts and instead purchased a yoga matt and began teaching myself yoga and meditation. You need to meditate ALONE to heal the inside. 7) Refrain from ALL sexual activity.

okay in summary ......
Im no doctor (I am a med student though :>) however, I firmly believe that rosacea has a HUGE psychological element that must be dealt with. Meditation and yoga practiced on your own and self taught are great ways to begin the journey of learning how to control the inner workings of your body (ie. the organ systems responsible for your rosacea) Also DIET, if you follow what I say, you're going to loose a lot of weight and feel like crap for the first few weeks. I started noticing changes 3 days after beiginning vegetarian diet. I think the meat and associated saturated fats was fueling my rosacea. I know everyone is different but basically my approach is... obviously for some people whatever they are doing isnt working, so TIP YOUR WHOLE LIFE UP SIDE DOWN and make some serious changes.

Please give me criticisms on my post, I'm probably very rude, presumptuous etc... but hey my objective here, mission, etc.. is to pass on my wisdom that I have learned. so all us red faced people can get closer to the skin we want!

Ok lets hear some feedback please...

[Melissa W]

Hi Stranger and welcome to RF.

You had me up to #7 (and #6 as well but #7 really caught my attention).

I am happy you are finding what helps your rosacea symptoms. That is great. Perhaps though you don't need to be so extreme. For instance what if you worked out moderately a few times a week? What if you did not refrain from all pleasurable activities?

Maybe eating healthfully as you are doing and avoiding alcohol would be enough for you to obtain relief from your rosacea symptoms.
Have you tried adding certain activities back in to see if this would be possible?
After all there is a quality of life factor that must be taken into account. Of course this is different for everbody as we all have different wants and needs. Just thought it might be worth trying.

Thanks for sharing what is working for you and good luck with your medical studies.

Best wishes,
Melissa

[boyandhisdog]

Glad you posted and glad you don't mind some criticism and feedback...

Your name is apt because as I read, the post it just became stranger and stranger...laugh: You lost me at number, I don't know- #1. Yep, that's where I stopped drinking the kool-aid.

I'm with Melissa. If Number 6 and number 7 are a "cure", f--k it (pun intended).laugh:

I'll stick with red, in good shape, and in a good mood due to sex and alcohol thanks. Pale- but skinny without muscles, no beer, and worse yet- no sex? Oh that's just a perscription for me shooting someone in a fit of road rage is what that is.

Let me see if I read your post correctly- your saying living like a buddhist monk is the cure for rosacea?shock: In all sincerity, the "cure" I look for would be one that balances what is important in life. I fail to see how a person who doesn't have ANY sexual activity- therefore one who is unlikely to have any significant other in their lives- would be construed to being a boost to what you believe to be a "psychological" element. Study after study has confirmed that happily "married" couples live longer, healthier lives.

A life of denial, exclusion, abstinence and meditating "ALONE" is a better recipe for the Unabomber than a well adjusted member of society IMO.shock:

[MissD]

No no no, you've got it all wrong Stranger. The cure to rosacea is this: first, you must gather three amaranth flowers, five dandelions, a skull of a boar, pure water from a stream that flows south, a red rose, and the foot of a freshly killed raven. In the following week you must grind up the amaranth and dandelions with a mortar and pestle and create a bowl from the boar's skull. Pour the crushed flowers as well as the water into it and make a necklace out of the raven's foot and rose. Next, you must abstain from all forms of physical exertion for an entire week and when I say all forms, I mean it. No walking, no talking, no typing, nothing. The less you breathe the better.

After the first week, you can eat the dandelion-amaranth-water mixture in the morning and at night. This will empty your body of all toxins and the raven foot and rose around your neck will remind your body that it's the rosacea you want to cure the most.

By the third week you should be very tired but pale as milk and rosacea-free!

[boyandhisdog]

laugh:

[J-Mill]

I will try to keep this brief.

1) I quit drinking alcohol COMPLETELY, rosacea loves alcohol it goes crazy for it. I quit smoking all substances and being in environments where there was excessive smoke. 2) I gave up all medicated products oral antibiotics/topical gels/creams etc.. and only use 100% pure cold pressed Jojoba oil from the seed as my twice, thrice daily moisturiser. 3) Every chance I get I drink purified water and in the mornings I squeeze the juice of one lemon into a litre purified water to begin the day. Also during daylight hours drink plenty of organic green tea (jasmine) etc.. and during the evening drink Rooibos tea (Antioxidents baby) 4) I began Vegetarian/gluten/wheat free diet, meaning no red meat, chicken, pork lamb etcc.. no dairy no eggs and no gluten/wheat and processes sugars. Only fresh baked fish for fatty acids omega 3 etc.. and PLENTY of fresh steamed vegetables lots of the green ones. Eat them for breakfast RAW lots of fibre baby! + seed and nuts.. almonds etc.. almond paste 5) every night I drink my flaxseed oil, every morning I have my daily multivitamins vitamin c sups etc.. 6) I stopped going to the gym and doing heavy workouts and instead purchased a yoga matt and began teaching myself yoga and meditation. You need to meditate ALONE to heal the inside. 7) Refrain from ALL sexual activity.

okay in summary ......
Im no doctor (I am a med student though :>) however, I firmly believe that rosacea has a HUGE psychological element that must be dealt with. Meditation and yoga practiced on your own and self taught are great ways to begin the journey of learning how to control the inner workings of your body (ie. the organ systems responsible for your rosacea) Also DIET, if you follow what I say, you're going to loose a lot of weight and feel like crap for the first few weeks. I started noticing changes 3 days after beiginning vegetarian diet. I think the meat and associated saturated fats was fueling my rosacea. I know everyone is different but basically my approach is... obviously for some people whatever they are doing isnt working, so TIP YOUR WHOLE LIFE UP SIDE DOWN and make some serious changes.

Please give me criticisms on my post, I'm probably very rude, presumptuous etc... but hey my objective here, mission, etc.. is to pass on my wisdom that I have learned. so all us red faced people can get closer to the skin we want!

Ok lets hear some feedback please...

I knew I remembered you from somewhere:

http://www.bestrank.com/files/uploads/1/image/bad_advice1.jpg

Didn't take it then, won't take it now. Good to see you again though.

[TheMediumDog]

Don't listen to them, Stranger.

It takes a big effort of will to effect the kind of total turnaround you're talking about. I think that those kinds of things are made easier if you're "universal" about it - like, you can't really give up smoking if you allow yourself to have one "now and then" (or I can't).

But now you're on the high ground, I'm sure that, like Melissa says, you could add in some things (from all the numbers) occasionally without detriment to the rosacea. Of course, you may actually like the 'pure' life, which is also just fine.

So well done. But also consider yourself lucky. I've given up most of the things on that list and its had zero effect on my rosacea.

ermm: ...actually....

....I'm going to talk to my girlfriend. Got to go.....

[stranger]

I expected constructive critical feedback but nothing like that.

I think I should have been clearer in respect to the numbered points. I was not suggesting that a person should act on every point, rather try a few that they haven't tried before. I tried a few things in the beginning that didn't seem to be working. So, i thought, if I can't identify what exactly is causing this problem I will eradicate every known possible stimulant from my life. It worked. Of course I will introduce things back in to my diet, like bread n butter pudding, cheesecake also other fun stuff - erercise, sex, but I think I still need to try this for a few more months because there has been much improvement. I can slo use the word Obviously because Obviously everyone knows that there is no Universal approach, different strokes for different folks. I am amazed by the degree to which some people went out of there way to criticise me just for the sake of it.

Very nice pack mentality going on here, but anyways thanks for some of your encouraging comments. I may take life too seriously, you guys may want to look at your perspective on recieving new/abstract/ambiguous information. I'm sure out of my poorly constructed post there will be something helpful to someone out there and it will be the catalyst for reducing or curing their rocaea.

Peace

[phlika29]

I think that with such an an extreme post such as yours will always raise debate. From the sounds of it you implied that you had to give up everything enjoyable in life. As rosacea tends to be a chronic condition this is not a practical solution. As Rob pointed out you need some enjoyment in your life even if it means still having rosacea. Most people here have busy lives and want normal day to day things that can help them, there is nothing wrong with this.

I hope that you will take the posts in the lighthearted manner they were intended.

[spuggylegs]

I
I hope that you will take the posts in the lighthearted manner they were intended.

hmm is that what you call it? there is a big difference between friendly banter, and going out of your way to belittle someone... welcome to the forum Stranger!!!

[Melissa W]

Hi Stranger and welcome to RF.

You had me up to #7 (and #6 as well but #7 really caught my attention).

I am happy you are finding what helps your rosacea symptoms. That is great. Perhaps though you don't need to be so extreme. For instance what if you worked out moderately a few times a week? What if you did not refrain from all pleasurable activities?

Maybe eating healthfully as you are doing and avoiding alcohol would be enough for you to obtain relief from your rosacea symptoms.
Have you tried adding certain activities back in to see if this would be possible?
After all there is a quality of life factor that must be taken into account. Of course this is different for everbody as we all have different wants and needs. Just thought it might be worth trying.

Thanks for sharing what is working for you and good luck with your medical studies.

Best wishes,
Melissa

Hi Stranger,
As I said before we appreciate you sharing your info on what works for you and are very glad you took the time to post here. yes:


Best wishes,
Melissa

ps the other guys were just as Sarah said being lighthearted in their responses as they are funny guys and it does help to lighten the mood around here sometimes. sidehug: I can assure you that they meant nothing ill-mannered by it and that we all wholeheartedly welcome you to the RF. Having a good sense of humor makes everything a lot easier to deal with and I want you to know they were doing it in a good natured way. It can be hard to realize that when you are a newcomer and do not know their posting style smile:

[boyandhisdog]

Glad you posted and glad you don't mind some criticism and feedback...

Your name is apt because as I read, the post it just became stranger and stranger...laugh: You lost me at number, I don't know- #1. Yep, that's where I stopped drinking the kool-aid.

I'm with Melissa. If Number 6 and number 7 are a "cure", f--k it (pun intended).laugh:

I'll stick with red, in good shape, and in a good mood due to sex and alcohol thanks. Pale- but skinny without muscles, no beer, and worse yet- no sex? Oh that's just a perscription for me shooting someone in a fit of road rage is what that is.

Let me see if I read your post correctly- your saying living like a buddhist monk is the cure for rosacea?shock: In all sincerity, the "cure" I look for would be one that balances what is important in life. I fail to see how a person who doesn't have ANY sexual activity- therefore one who is unlikely to have any significant other in their lives- would be construed to being a boost to what you believe to be a "psychological" element. Study after study has confirmed that happily "married" couples live longer, healthier lives.

A life of denial, exclusion, abstinence and meditating "ALONE" is a better recipe for the Unabomber than a well adjusted member of society IMO.shock:

I'll stick with my post as written.

No one needs to apolgize on my behalf. I don't think anything in my post is offensive. I personally remain skeptical of any persons first post, added onto a 2005 thread, and claiming a cure. I'm crazy like that, sorry.

I think that anyone who posts that "if you catch this thing early, the easier it is to keep in check and cure (yep cure, i think it's possible)", and also makes the statements,"(ie. the organ systems responsible for your rosacea)" as a "medical student", and that your internal organs can be controlled with meditation deserves to be questioned.

Until then, I will stick with my post, as written and keep my $1.

[MissD]

^^ I agree. And my post was in reference to medieval folk medicine which, honestly, Stranger's post reminded me of. It's like some well-meaning fellow from the middle ages found a time machine and discovered the internet. :-#

[J-Mill]

I would apologize for referring to point 1 as bad advice if this was taken seriously (for the record the picture I posted was clearly not you): drinking mass quantities of alcohol and smoking cigarettes/narcotics is just plain bad for your health period, I would not be surprised if this caused a boat load to health problems. I am sure most people here would have out of control Rosacea if they were consuming at the levels you describe.

I would not apologize thereafter. In all seriousness, there is there zero scientific evidence to back up the use of any of those methods as treatment for Rosacea. Although anecdotal evidence exists to suggest that certain diets such as the one you are on can assist Rosacea there are anecdotal reports of people whose rosacea got worse while on similar diets. I am also not sure what skin disorder you had, but bleeding sores are not a symptom of either Rosacea or Seb Derm (I have had both for a number of years now and read countless research articles on both).

Giving up regular exercise is not a solution to Rosacea and generally bad for your health.

Proper diet provides your body with all the nutrients it needs, anything else either literally gets pissed away or has to be stored somewhere in the body, for better or for worse. Supplements are intended for people who by reason of genetics or circumstances are deficient is vital vitamins/minerals, imho. The marketing of supplements is one of the great cons of the last few decades.

You went from refusing to give up clearly unhealthy lifestyle habits to giving up lifestyle period. Moderating your lifestyle by giving up the clearly unhealthy habits while keeping the healthy, normal ones would likely produce the same effect for you.

Giving up the things you describe would be the worst symptom Rosacea has to offer imo, that is the true psychological impact, the feeling that in order to be "less red" and therefore "normal" you have to give up life, not so.

That is my critical feedback.

[boyandhisdog]

This is a picture of Stranger, Medium Dog, and Spuggylegs out for the one last fun thing left in their liveslaugh:...

http://sensitivitytothings.com/wp-content/uploads/2008/03/roller-coaster-monks.jpg

Please note that none of them show any signs of rosacea. However, the austerity program does apparently lead to baldness and a strange saffron fashion sense.

Relax. It's a joke. Butch up.

[Alba]

Lmao!

[MissD]

I love you all.

[Melissa W]

This is a picture of Stranger, Medium Dog, and Spuggylegs out for the one last fun thing left in their liveslaugh:...

http://sensitivitytothings.com/wp-content/uploads/2008/03/roller-coaster-monks.jpg

Please note that none of them show any signs of rosacea. However, the austerity program does apparently lead to baldness and a strange saffron fashion sense.

Relax. It's a joke. Butch up.

laugh:

Next time get Alex to take the photo so you can show us your pearly whites grin:

[ewist]

I will try to keep this brief.

Well, I'm 25yo male, I was told by dermo I had rosacea + seb derm 3 years ago. I was also told of the lifestyle changes I would have to make in order to keep this under control. I didn't listen. I continued smoking cigs, marijuana, drinking excessively, and much much more. Until my face became permanently red with bleeding sores pastules papules etc... whatever... It ruined my life, I went from an outgoing, confident uni student, to someone who was afraid to leave my room, quiet, avoiding everything etc... So anyway. Eventually you have to decide to make big big changes.

So far after 1 month on this program my Rosacea is about 90% gone. I will keep everyone updated as to my progress. I think if you catch this thing early, the easier it is to keep in check and cure (yep cure, i think it's possible)

Below are the things I changed in my life.. I mixed it up... took myself out of my physical comfort zone and it's helped alot.

1) I quit drinking alcohol COMPLETELY, rosacea loves alcohol it goes crazy for it. I quit smoking all substances and being in environments where there was excessive smoke. 2) I gave up all medicated products oral antibiotics/topical gels/creams etc.. and only use 100% pure cold pressed Jojoba oil from the seed as my twice, thrice daily moisturiser. 3) Every chance I get I drink purified water and in the mornings I squeeze the juice of one lemon into a litre purified water to begin the day. Also during daylight hours drink plenty of organic green tea (jasmine) etc.. and during the evening drink Rooibos tea (Antioxidents baby) 4) I began Vegetarian/gluten/wheat free diet, meaning no red meat, chicken, pork lamb etcc.. no dairy no eggs and no gluten/wheat and processes sugars. Only fresh baked fish for fatty acids omega 3 etc.. and PLENTY of fresh steamed vegetables lots of the green ones. Eat them for breakfast RAW lots of fibre baby! + seed and nuts.. almonds etc.. almond paste 5) every night I drink my flaxseed oil, every morning I have my daily multivitamins vitamin c sups etc.. 6) I stopped going to the gym and doing heavy workouts and instead purchased a yoga matt and began teaching myself yoga and meditation. You need to meditate ALONE to heal the inside. 7) Refrain from ALL sexual activity.

okay in summary ......
Im no doctor (I am a med student though :>) however, I firmly believe that rosacea has a HUGE psychological element that must be dealt with. Meditation and yoga practiced on your own and self taught are great ways to begin the journey of learning how to control the inner workings of your body (ie. the organ systems responsible for your rosacea) Also DIET, if you follow what I say, you're going to loose a lot of weight and feel like crap for the first few weeks. I started noticing changes 3 days after beiginning vegetarian diet. I think the meat and associated saturated fats was fueling my rosacea. I know everyone is different but basically my approach is... obviously for some people whatever they are doing isnt working, so TIP YOUR WHOLE LIFE UP SIDE DOWN and make some serious changes.

Please give me criticisms on my post, I'm probably very rude, presumptuous etc... but hey my objective here, mission, etc.. is to pass on my wisdom that I have learned. so all us red faced people can get closer to the skin we want!

Ok lets hear some feedback please...
I really hope this is a joke

[slugger3939]

Wow, the guy has come on here to tell (presumably the truth) what has worked for him and that's the response he's got....(Melissa, J-Mill and Sarah excluded). I'm suprised people don't live in fear of posting... I guess some peoples idea of light hearted is different to others....

[Spav]

Well i also think people have been unduly harsh to Stranger here. He didn't give a lecture or a sermon just said what worked for him. Nothing wrong with that IMHO. I'd hate to think i'd miss out on some great info just because somebody was afraid of posting.

I think we should be encouraging people to post there stories especially when it's helped their rosacea. It gives us more data to make our own decisions on what helps and what treatments to try.

[MasK]

I agree, and by the way, what he said is not that weird imo.
Thank you Stranger, for posting your story. I'm happy it works for you.

[phlika29]

Really I am just going to repeat what I said before. If you come on to give advice to people that is fairly extreme then you are going to get some interesting responses.

I will say this I whole heartedly disagree with Strangers advice to give up everything. it is not practicable and once again as Rob has said will not enable a fulfilling life. yes we have rosacea but it should not define everything we can and can not do. There has to be some balance in life, some fun and we need to be careful who's advice we listen to.

Using Strangers approach to completly regulate how we think about our bodies and the lifestyle we choose we are placing the blame for rosacea on the individual. The person is at fault for not conquering it, if only they had denied themselves more......

[boyandhisdog]

Far from it. I think the advice outlined is excellent.

I for one strongly suggest people follow the Austerity Program and let us know in 30 days when their rosacea will be 90% cleared up. Armed with the "wisdom" outlined, it should be no problem to fix up the psychosis and "organs" that are causing your rosacea.

Look forward to hearing back on the trial results.

[J-Mill]

Really I am just going to repeat what I said before. If you come on to give advice to people that is fairly extreme then you are going to get some interesting responses.

I will say this I whole heartedly disagree with Strangers advice to give up everything. it is not practicable and once again as Rob has said will not enable a fulfilling life. yes we have rosacea but it should not define everything we can and can not do. There has to be some balance in life, some fun and we need to be careful who's advice we listen to.

Using Strangers approach to completly regulate how we think about our bodies and the lifestyle we choose we are placing the blame for rosacea on the individual. The person is at fault for not conquering it, if only they had denied themselves more......

Not to mention the efficacy of such "treatment" appears to be quite low. I have met/corresponded with more people who either did not improve or got worse (re: their Rosacea) attempting to regulate it with strict diets along the lines suggested here and giving up things such as exercise, etc.

The highest efficacy for treating Rosacea I have found to involve a combination of things: proper medical treatment, a good skin care regime, a good diet that is centered around moderation not denial, regular exercise, healthy living (no recreational drugs) and most importantly a positive attitude.

Although I never begrudge anyone success with any medical condition, I am not surprised that Stranger's post elicited the responses it did. I agree with Sarah it was an extreme position and it asked for commentary, one could hardly complain afterwards because they don't like the responses they get. It still seems to me that the copious drinking and recreational drug use described are likely more to blame for aggravating any health condition involved then the diet, exercise and lack of meditation put together. Seems like pretty simple math: alcohol+narcotics=bad health. Yet some people here advocate treating that with kid gloves, I disagree, the obvious needs a large billboard.

This is nothing new anyway, people have been having these discussions on this board for years. Personalities and ideals clash, it has not stopped people from posting the same stuff again and again. I doubt this will make any difference.

[Melissa W]

Differences in opinion leads to lively conversations and discussions that may actually teach us something useful so Viva la difference smile:

and keep posting on what works for each person yes:

[AlkiGirl]

Chiming in, as I to some degree have been following the diet Stranger outlined, with fantastic results. About five months ago I began flushing/ getting papules, seemingly out of nowhere. After getting food allergy testing, I discovered I was "sensitive" to several foods including gluten, dairy and eggs. I went completely vegan and gluten free for one month and the flushing stopped after just 4 days without meat/gluten, and the redness cleared up about a week after that. Since then, I have slowly been reintroducing foods and have discovered that the flushing resumed when I was back on a "normal" diet (but no permanent redness or papules this time, thank goodness). Currently, I'm experimenting with which foods seem to cause this, by adding them back in very slowly, one at a time. Anyway, this has been an interesting discovery process to me, so wanted to share. I certainly wouldn't say I've been cured, but I feel optimistic about being able to control this mostly through diet.

[MasK]

Chiming in, as I to some degree have been following the diet Stranger outlined, with fantastic results. About five months ago I began flushing/ getting papules, seemingly out of nowhere. After getting food allergy testing, I discovered I was "sensitive" to several foods including gluten, dairy and eggs. I went completely vegan and gluten free for one month and the flushing stopped after just 4 days without meat/gluten, and the redness cleared up about a week after that. Since then, I have slowly been reintroducing foods and have discovered that the flushing resumed when I was back on a "normal" diet (but no permanent redness or papules this time, thank goodness). Currently, I'm experimenting with which foods seem to cause this, by adding them back in very slowly, one at a time. Anyway, this has been an interesting discovery process to me, so wanted to share. I certainly wouldn't say I've been cured, but I feel optimistic about being able to control this mostly through diet.

Great news!

[MissD]

Chiming in, as I to some degree have been following the diet Stranger outlined, with fantastic results. About five months ago I began flushing/ getting papules, seemingly out of nowhere. After getting food allergy testing, I discovered I was "sensitive" to several foods including gluten, dairy and eggs. I went completely vegan and gluten free for one month and the flushing stopped after just 4 days without meat/gluten, and the redness cleared up about a week after that. Since then, I have slowly been reintroducing foods and have discovered that the flushing resumed when I was back on a "normal" diet (but no permanent redness or papules this time, thank goodness). Currently, I'm experimenting with which foods seem to cause this, by adding them back in very slowly, one at a time. Anyway, this has been an interesting discovery process to me, so wanted to share. I certainly wouldn't say I've been cured, but I feel optimistic about being able to control this mostly through diet.

That sounds quite different from what Stranger was suggesting, and in your case if it's some kind of food intolerance I have trouble believing it's actually rosacea. In any case, it's excellent you've discovered your triggers and can control it effectively that way.

[AlkiGirl]

That sounds quite different from what Stranger was suggesting, and in your case if it's some kind of food intolerance I have trouble believing it's actually rosacea. In any case, it's excellent you've discovered your triggers and can control it effectively that way.

Thanks. Here's the strange part-- I had no other symptoms of food intolerance (no bloating, indigestion, etc). My doctor said food intolerances have a wide range of potential effects on the body which isn't yet fully understood. When you consider the link between rosacea and digestion, who knows. Interesting stuff. I'm not saying this is everyone's cause of rosacea, or even my own, but some food for thought at the very least (pardon the terrible pun!)

[J-Mill]

That sounds quite different from what Stranger was suggesting, and in your case if it's some kind of food intolerance I have trouble believing it's actually rosacea. In any case, it's excellent you've discovered your triggers and can control it effectively that way.

The sure fire test imo is if the condition clears up in a few days/weeks its not likely Rosacea. One of the known pathogenesis of Rosacea is the damage to the underlying capillaries. They take at least 4 months to regenerate in everyone.

Still Rosacea-like dermatitis carries many of the same concerns, is just obviously easier to deal with.

I'm glad I don't have any food intolerance problems, I would hate having to be overly restrictive about diet (when I was training for marathons the running was easy it was the diet that I hated). My regular eating habits are very healthy as it is, Ii benefit from not having a sweet tooth, my sugar intake has always been low. Plus I love proteins, especially seafood.

[MissD]

Thanks. Here's the strange part-- I had no other symptoms of food intolerance (no bloating, indigestion, etc). My doctor said food intolerances have a wide range of potential effects on the body which isn't yet fully understood. When you consider the link between rosacea and digestion, who knows. Interesting stuff. I'm not saying this is everyone's cause of rosacea, or even my own, but some food for thought at the very least (pardon the terrible pun!)

Yeah, I was actually hoping I had a wheat intolerance or something instead of rosacea because at least then I could control flushing by simply not consuming whatever the trigger was instead of flaring at random and wondering wtf is going on. But I had/have no other symptoms that would suggest an intolerance such as like you said, no digestion problems or even rashes or redness anywhere but my face. I'm doing fine now though.

[vassargirl]

kind of sickening how some responded to stranger's post. he took a risk by sharing and the insults (or "jokes" as some them) were very high schoolish. we who suffer from rosacea don't need any more pain. there are more productive & intelligent ways one can give feedback. and frankly what he said had some logic.

[eastwest]

I've been in remission for about 2 years now. What used to be triggers aren't triggers anymore. I can eat spicy foods once in a while. But I am very careful about what I eat and actually avoid things like spicy foods whenever I can. I work out intensely several times a week.

I stopped applying noritate about 2 years ago and I don't take any treatments specifically for rosacea. I eat healthy and go for acupuncture once a week. I do take herbal teas every day as prescribed by my Chinese medicine Doctor. These herbal teas are for overall digestion and well being. I won't have to take these herbal remedies forever, but will continue them for the time being.

I will occasionally get a flare up (once every couple of months), but it's like how my rosacea was when it first started. Like getting an occasional itchy hive that usually goes away within a few hours.

My cheeks are just normal temperature, I'd say 90% of the time.

[J-Mill]

kind of sickening how some responded to stranger's post. he took a risk by sharing and the insults (or "jokes" as some them) were very high schoolish. we who suffer from rosacea don't need any more pain. there are more productive & intelligent ways one can give feedback. and frankly what he said had some logic.

Interesting first post...

Could you please forward me the scientific evidence/studies that suggest that abstaining from exercise and/or sexual relations is good for Rosacea?

Also do you have any studies or scientific evidence that shows that one can learn to control through meditation: "the inner workings of your body (ie. the organ systems responsible for your rosacea)".

I disagree, the above has no logic, I posted as much at post #35 in this thread. I have received no real response other than people whining about insensitivity. Easier to complain than to try and back that up I suppose.

[ctznkane]

Uhh, there is no doubt in my mind at least that there is a psychological component to Rosacea. So whether someone finds a solution in meditation, abstinence or any other method, who are you to challenge them? Live and let live. Drunk2:

[Melissa W]

Uhh, there is no doubt in my mind at least that there is a psychological component to Rosacea.

I believe there is a psychological component to having rosacea.
Not that rosacea is caused by a psychological component but that it may cause psychological issues in some and great emotional stress in many. And certainly rosacea can be exacerbated by emotions. But not caused by them IMO.

[ctznkane]

Exactly, and if someone manages to overcome the self-imposed emotional trauma of having Rosacea (which is a large part of the problem) by whatever means, then more power to them.

[Melissa W]

Exactly, and if someone manages to overcome the self-imposed emotional trauma of having Rosacea (which is a large part of the problem) by whatever means, then more power to them.

I totally agree yes:

[RedFaced]

I wouldn't be too quick too dismiss stress and anxiety as a possible cause or at the least a big component of Rosacea. If you read various sites, studies, and experiences, Stress is always listed as the number 1 or number 2 trigger for flares. I have also read several reports of Rosacea being brought on or initiated after a tramatic experience (stress etc.). Even reports of people being in remission for years and then Rosacea returning after a stressful event.

It's sort of comparable to heart disease, stress can cause heart disease and heart attacks, even death, but along with stress, diet, lifestyle usually play roles in heart disease and heart attacks.

If stress can exacberate and be a contributing cause of Rosacea flares in the majority of people then why could it not play a role in the primary cause?

Most people become stressed. depressed and anxious once diagnosed with Rosacea and from then on it is a vicious circle with the anxiety fueling the rosacea and the rosacea gets worst and people become more anxious and on it goes...

Stress has even been studied as a possible cause of some cancers.

Stress depletes the immune system, this is a proven fact, without a healthy immune system, the body is vulnerable to many diseases and disorders that wouldn't otherwise exist in a healthy body & mind.

Eliminating stress and anxiety from your life is a very difficult thing to do as life is full of ups and downs. Mediation is a good step in trying to eradicate stress and anxiety.

I think medications can help aid in the recovery process, but I tend to agree with the OP that stress and anxiety need to be fully eradicated in order to beat the disease. I feel that stress and anxiety are part of the root cause of Rosacea. The combination of medications and overcoming stress/anxiety is the only recipe for remission in my opinion.

Just my 2 cents.

[J-Mill]

Uhh, there is no doubt in my mind at least that there is a psychological component to Rosacea. So whether someone finds a solution in meditation, abstinence or any other method, who are you to challenge them? Live and let live. Drunk2:

I agree that meditation can certainly be a useful tool for eliminating stress. I also agree that stress is bad for your health. If that was the gist of the post I wouldn't have posted as I did.

In my post I quoted directly from the original post where the poster indicated that he used meditation to learn to control: "the inner workings of your body (ie. the organ systems responsible for your rosacea)".

I happily stand behind my comments challenging the validity of this. It bears noting that the original poster specifically asked for any criticism.

I am not against meditation though, its not like it can harm you...as far as I know anyway. laugh:

[RedFaced]

^ You wouldn't believe what meditation is capable of acheiving - don't dismiss it so quickly. I challenge you to read up on it, particularly Vipassana meditation. I encourage you to educate yourself a little more on the practice and fundamentals of it as well as the possibilities.

Here is one account in case you are interested:

This is a 64 year-old man who developed symptoms leading to a biopsy-proven carcinoma of the rectum. He was a psychologist by profession. He refused surgery, and sought other direction. He did extensive meditation work and engaged in meditation at home for 1-2 hours/day between office appointments. He noted subjective improvement in 2 weeks. In 6 weeks he discontinued enemas which had been necessary due to partial obstruction of the colon. In 2 months he no longer had to be up at night. After a setback following a negative suggestion from an iridologist, he again improved, and 6 months later his stools had returned to a normal caliber. One year later all symptoms were gone. His meditation practice averaged 3 hours/day, in "divided doses."

He returned to his joyful activities of writing poetry and hang-gliding.

Meares A. Regression of Cancer of the Rectum Following Intensive Meditation. Med J Aust Nov 17 1979; 2(10):3940.

I'm not jumping on any sides, just adding that when dealing with Rosacea, or illness in general, we sometimes need to open our eyes and think outside the (Western Philosophy) box, in regards to the mind and body - both in disease and recovery.

[ctznkane]

So is everyone here a hippie? Cool.heros:

[mattdog323]

So is everyone here a hippie? Cool.heros:

That's cool m8!!

At least hippies are more relaxed,

There nothing worse than ego driven threads!!!

Regards MATTshock:

[dpart]

In my post I quoted directly from the original post where the poster indicated that he used meditation to learn to control: "the inner workings of your body (ie. the organ systems responsible for your rosacea)"

There is examples of extreme achievements using meditation, see this Discovery documentary about about Ram Bahadur Bamjan ("Buddha Boy") who has (according to the claims) been meditating for 3 years without food or water, in the documentary Discovery is checking the validity of the claims (It was 10 months when they did the documentary).
YouTube - Documentary About Buddha Boy (1 of 5) Ram Bahadur Bamjan
To me it sounds a little far fetched, but it's an interesting watch and even if they are secretly giving food and water it's still a pretty impressive achievement, given the complications of sitting still for such a long time.

In the documentary they talk about how he has to control and redirect his own blood supply so that he can sit for so long without getting nasty sitting wounds, and to maintain the health of his body parts. He can "redirect his rosacea flushing down to his ass" so to speak hehe :D Also according to the documentary, it is several examples of people able to have more control of their internal organs through meditation, but that's all pretty extreme examples and I don't think it's achievable by the average westerners.

[J-Mill]

^ You wouldn't believe what meditation is capable of acheiving - don't dismiss it so quickly. I challenge you to read up on it, particularly Vipassana meditation. I encourage you to educate yourself a little more on the practice and fundamentals of it as well as the possibilities.

Here is one account in case you are interested:

This is a 64 year-old man who developed symptoms leading to a biopsy-proven carcinoma of the rectum. He was a psychologist by profession. He refused surgery, and sought other direction. He did extensive meditation work and engaged in meditation at home for 1-2 hours/day between office appointments. He noted subjective improvement in 2 weeks. In 6 weeks he discontinued enemas which had been necessary due to partial obstruction of the colon. In 2 months he no longer had to be up at night. After a setback following a negative suggestion from an iridologist, he again improved, and 6 months later his stools had returned to a normal caliber. One year later all symptoms were gone. His meditation practice averaged 3 hours/day, in "divided doses."

He returned to his joyful activities of writing poetry and hang-gliding.

Meares A. Regression of Cancer of the Rectum Following Intensive Meditation. Med J Aust Nov 17 1979; 2(10):3940.

I'm not jumping on any sides, just adding that when dealing with Rosacea, or illness in general, we sometimes need to open our eyes and think outside the (Western Philosophy) box, in regards to the mind and body - both in disease and recovery.

I actually tracked down the article. The author was not suggesting a cause and effect relationship between the meditation and the cancer remission. He chalked this up to a case of spontaneous remission, which does occur.

People with potentially terminal cancer go to Mexico and have quacks apply "healing crystals" to their body (instead of chemotherapy) and go into remission. The quacks claim the crystals healed them. The vast majority of the people who do the treatment die of cancer.

I am not equating meditation with quackery. I think it is a helpful tool for stress relief which can be a good thing in any disease process. I am not anti-alternative treatment I am anti-wild claims. It is one thing to say meditation is good for you, quite another to suggest that you can learn to control your inner organs.

Either way there is no reason not to put these treatments to the same level of scrutiny and testing that we would any so-called western treatment (ignoring the fact that most western medicine derives itself from prescriptions medications which in turn are derived in whole or in part from natural products). One guy whose cancer went into remission 30 years ago while he was deeply into meditation is hardly evidence of the miraculous curing powers of meditation.

[nataljaoo]

I agree with Redface that stress and anxiety are major triggers for rosacea. MIne started after a very stressful period, really out of the blue. Even now stress and anxiety are major triggers that stir my roscea up immensely. I was in the circle you describe so well Redface, and I cam out of it with medications. Mirtazapine helped my flushing getting better and my anxiety and depression as well. Ever since the spiral has gone up and up. My skin is still improving, altough I still have vascular rosacea and bad periods and many triggers I need to avoid and lifestyle changes I need to stick to. But me feeling calm and content inside has been the key. The anxiety stirred up my blood pressure and released hormones that just made my face explode, so to say.

How you get this peace of mind, well, thaqt is of course personal. I was in too deep for meditation to have any effect. I tackled it with the serious drugs, but they were very effective. But for many meditation and chosing for a happier and calmer lifestyle (ditching that stressfull and negative boyfriend/girlfriend for instance) can help as well.

[RedFaced]

Hey there, glad to see someone with similar feelings and experiences. I think you hit the nail on the head in terms of gaining control over your emotions as a large part of controlling your Rosacea - whether it be with medications or through meditation or in a lot of cases, a combination of the two.

May I ask what dose of Mirtazipine you are currently taking?

I agree with Redface that stress and anxiety are major triggers for rosacea. MIne started after a very stressful period, really out of the blue. Even now stress and anxiety are major triggers that stir my roscea up immensely. I was in the circle you describe so well Redface, and I cam out of it with medications. Mirtazapine helped my flushing getting better and my anxiety and depression as well. Ever since the spiral has gone up and up. My skin is still improving, altough I still have vascular rosacea and bad periods and many triggers I need to avoid and lifestyle changes I need to stick to. But me feeling calm and content inside has been the key. The anxiety stirred up my blood pressure and released hormones that just made my face explode, so to say.

How you get this peace of mind, well, thaqt is of course personal. I was in too deep for meditation to have any effect. I tackled it with the serious drugs, but they were very effective. But for many meditation and chosing for a happier and calmer lifestyle (ditching that stressfull and negative boyfriend/girlfriend for instance) can help as well.

[RedFaced]

I'm not sure exactly what was said, but "learning to control your inner organs" is a pretty broad statement and could simply mean "learning to control your brain" or thoughts/emotions/reactions etc. as the brain is an "inner organ". Learning to control your thoughts/emotions/reactions is quite possible through several meditation techniques.

Again, I haven't had the time to go back and read the OP in its entirety, so I could be off myself on what he was referring to as an inner organ.

Nevertheless, it makes for interesting discussion smile:

I actually tracked down the article. The author was not suggesting a cause and effect relationship between the meditation and the cancer remission. He chalked this up to a case of spontaneous remission, which does occur.

People with potentially terminal cancer go to Mexico and have quacks apply "healing crystals" to their body (instead of chemotherapy) and go into remission. The quacks claim the crystals healed them. The vast majority of the people who do the treatment die of cancer.

I am not equating meditation with quackery. I think it is a helpful tool for stress relief which can be a good thing in any disease process. I am not anti-alternative treatment I am anti-wild claims. It is one thing to say meditation is good for you, quite another to suggest that you can learn to control your inner organs.

Either way there is no reason not to put these treatments to the same level of scrutiny and testing that we would any so-called western treatment (ignoring the fact that most western medicine derives itself from prescriptions medications which in turn are derived in whole or in part from natural products). One guy whose cancer went into remission 30 years ago while he was deeply into meditation is hardly evidence of the miraculous curing powers of meditation.

[nataljaoo]

Hey there, glad to see someone with similar feelings and experiences. I think you hit the nail on the head in terms of gaining control over your emotions as a large part of controlling your Rosacea - whether it be with medications or through meditation or in a lot of cases, a combination of the two.

May I ask what dose of Mirtazipine you are currently taking?

Hi RedFaced, I am taking 30 mg at night, for 3,5 years now. It has since been very effective for me, bith mentally and fysically. No signs yet of it getting less efective in my opinion.

[TheMediumDog]

Natalja,

I think I read you say somewhere that at one point all the flushing and general inflammation was causing "scaling" on your skin.

Could you describe what exactly that was like, and how it has improved with the use of clonidine etc?

[nataljaoo]

Hi TheMediumDog,

I still have it every now and then now, but only when the air is very dry, I used coolpacks too long on my skin or when I have had a period of bad flushing and burning. I can't have anything on my skin creamwise, so moisturizers won''t help. The scaling is like you have dry skin, with little patches of almost dead flaking skin on top of it. Scratching will let some of them go, and when I wash my face, they seem gone, untill the skin dries up again and the crackelée returns. Usually in time it goes away again. Clonidine doesn't work immediately on the flaking, but it helps with reducing the flushing and burning and makes the face cooler, so in that way it does and did help for me to control the flaking.

Hope this helps...

[RedFaced]

Hi RedFaced, I am taking 30 mg at night, for 3,5 years now. It has since been very effective for me, bith mentally and fysically. No signs yet of it getting less efective in my opinion.

Hey there, great to hear. I am taking 15mg and am wondering if going up to 30mg would also help even more with the flushing as well as the mood (anxiety/stress) etc.

Were you ever on 15mg or start straight off on 30 mg?

[nataljaoo]

No, I strated with 7,5 mg for a week, then 15 mg for a few weeks and then 30 mg. I did experiment with 40 mg, but found 30 more effective for my flushing. I would just give it a try if I were you and see what happens...

[RedFaced]

No, I strated with 7,5 mg for a week, then 15 mg for a few weeks and then 30 mg. I did experiment with 40 mg, but found 30 more effective for my flushing. I would just give it a try if I were you and see what happens...

Hey, well I may try increasing by 7.5mg to 22.5mg daily then up to 30mg after a month or two. I spoke to my Dr and he said this may be best bet to go up in increments of 7.5mg for an easier transition.

I have been on the medication for a year - it has helped the most out of everything with flushing as well as helps the mood and sleep.

I wonder if taking the usual 15mg at bedtime and then 7.5mg during the day would work well? I notice after I take it I really mellow out about 30 mins or so later and my face goes more pale )probably also due to its strong anti-histamine effects).

You take it all at once or divided dose?

[nataljaoo]

Hi,

no, I take the 30 mg at one dose, always before sleeping. I am almost in a coma afterwards for the first 5 hours, so taking it during the day just makes me way too sleepy. Even the 7,5 mg. But this is perhaps personal. You might try to take part of your medication at night and part during the day. I believe I have read at the time that it has a half life of at least 24 hours, so taking it once every day should be sufficient to keep the plasma levels in your blood stable with the drug. But perhaps the antihistaminic actions wear off sooner..
I have an extra antihistamine with it, Xyzal which is wonderful.

[ctznkane]

I'd like to say that I started following a gluten-free diet (really not very restrictive), eating a few cloves of garlic a day (thank Vishnu for Wrigleys!) and drinking a couple of probiotic drinks on top of about 2 litres of water a day and my skin feels a lot better. I only started about 2 weeks ago but my self-esteem is on teh rise and flushing has stopped. My skin stays at baseline redness all the time now. I've stopped taking my prescribed Erythromycin too - did you know it can affect the central nervous system and cause psychotic reactions?
Anyway I'm off to try and find a gluten-free beer! Hope the sun is shining where you are today.
http://www.animatedgif.net/seasonal/misc/unclesam1_e0.gif

[RedFaced]

I'd like to say that I started following a gluten-free diet (really not very restrictive), eating a few cloves of garlic a day (thank Vishnu for Wrigleys!) and drinking a couple of probiotic drinks on top of about 2 litres of water a day and my skin feels a lot better. I only started about 2 weeks ago but my self-esteem is on teh rise and flushing has stopped. My skin stays at baseline redness all the time now. I've stopped taking my prescribed Erythromycin too - did you know it can affect the central nervous system and cause psychotic reactions?
Anyway I'm off to try and find a gluten-free beer! Hope the sun is shining where you are today.
http://www.animatedgif.net/seasonal/misc/unclesam1_e0.gif

Hey, yeah I need to get back to being gluten-free. I was for a while and it did help, then lately I have been eating some wheat.

I gave alcohol up 2 years ago. I get along pretty good with out it but nothing like a Corona with a lime on the deck or patio in the summer :D

Cheers bro

[Melissa W]

Anyway I'm off to try and find a gluten-free beer! Hope the sun is shining where you are today.


http://www.glutenfreepassport.com/eatingout/gfbeer.html

[Kristie]

Melissa - you are a wealth of information. Thanks so much for all your research you do for us!!

I used to love beer but gave is up since it made me flush. I might just have to try the gluten-free and see what happens. Who knows, maybe I can enjoy a beer again.

Cheers!
Kristie

[queta]

That's cool m8!!

At least hippies are more relaxed,

There nothing worse than ego driven threads!!!

Regards MATTshock:

Hey Matt
Hippies are the bomb! Right on.
Queta

[-ToadStooL-]

I dont really post in here that often. I'm usually stuck somewhere in between denial that I have rosacea and complete and utter misery of the fact.

I was reading through this thread, and, basically I think that Stranger makes alot of very valuable points. Unfortunately rosacea sufferers can become severely depressed, anti-social, go into hiding, even suicidal.

Its a terrible disease. I have read so many threads where people would basically joke about how if someone could prove that plastering your face with animal feces cured rosacea, we'd all be the first ones to get our hands on it and live happily in the knowledge of "living in sh!t"

Quick and easy answer are the holy grail to living. We all want some quick fix that we don't have to bust our asses over in order to get it. In reality.. thats not how it works. You either want something so bad that you will do EVERYTHING you can in order to obtain it... or you dont... and you SETTLE.

Well I've settled myself right into solitude, avoiding mirrors, declining invitations, SETTLING, for an uneventfully boring life of seclusion.... an doing so my face wont magically heal. It wont stop becoming inflamed, breaking out, flushing over night.

Stranger is right, regardless of his idea of all the things that could potentially help address and maybe even ease more of the symptoms of rosacea.... he's saying if you really want to do something, sometimes just doing little things arent going to be enough.

So make an effort worth making. And re-organize your way of thinking, your way of doing, and your way of re-acting to things... especially new ideas.

Like he said, turn your life upside down and get to the bottom of whatever the reason is.

I agree with everything Stranger has had to say, and, one of the worst things about forums are everyone's eagerness to jump on and attack new ideas and concepts. It is absolutely disgusting behavior.

You can all bash me if you'd like, I probably wont return to view it anyways, but, I had to say something on stranger's behalf (as well as the others that were pleasant/agreed/responded constructively)


All I know is that I'm tired of having to settle.

[J-Mill]

I dont really post in here that often. I'm usually stuck somewhere in between denial that I have rosacea and complete and utter misery of the fact.

I was reading through this thread, and, basically I think that Stranger makes alot of very valuable points. Unfortunately rosacea sufferers can become severely depressed, anti-social, go into hiding, even suicidal.

Its a terrible disease. I have read so many threads where people would basically joke about how if someone could prove that plastering your face with animal feces cured rosacea, we'd all be the first ones to get our hands on it and live happily in the knowledge of "living in sh!t"

Quick and easy answer are the holy grail to living. We all want some quick fix that we don't have to bust our asses over in order to get it. In reality.. thats not how it works. You either want something so bad that you will do EVERYTHING you can in order to obtain it... or you dont... and you SETTLE.

Well I've settled myself right into solitude, avoiding mirrors, declining invitations, SETTLING, for an uneventfully boring life of seclusion.... an doing so my face wont magically heal. It wont stop becoming inflamed, breaking out, flushing over night.

Stranger is right, regardless of his idea of all the things that could potentially help address and maybe even ease more of the symptoms of rosacea.... he's saying if you really want to do something, sometimes just doing little things arent going to be enough.

So make an effort worth making. And re-organize your way of thinking, your way of doing, and your way of re-acting to things... especially new ideas.

Like he said, turn your life upside down and get to the bottom of whatever the reason is.

I agree with everything Stranger has had to say, and, one of the worst things about forums are everyone's eagerness to jump on and attack new ideas and concepts. It is absolutely disgusting behavior.

You can all bash me if you'd like, I probably wont return to view it anyways, but, I had to say something on stranger's behalf (as well as the others that were pleasant/agreed/responded constructively)


All I know is that I'm tired of having to settle.

Stop letting your obsession over your appearance run your life and you don't have to settle. By all means you should try and treat Rosacea but giving in to this concept that your appearance is too hideous for public consumption is just wrong in my opinion. The pain associated with Rosacea for some can be managed.

I work with a guy who has Rosacea worse than mine, he doesn't even know he has it. He doesn't care. Being red in the face with breakouts hasn't stopped him from building a great career, earning the respect of his colleagues, having numerous friendships and building a beautiful family.

The sad truth about Rosacea for some is that it provides an excuse for not trying hard at life. If you focus half the energy you do on your Rosacea into your job and personal relationships you will be very successful, red face and all.

Getting over the hump can be hard, I recommend counselling to those who can't do it alone.

No one important truly cares about our appearance as much as we can. That is truly the way of thinking that needs to change around here in my opinion, the reliance on your appearance as an excuse for not living...too easy. Sad that people are missing out on life.

[rosabolic]

I think it is all bullshit, about living with this. Most of you here got this condition in your 40's. You lived your 20's withought caring about your skin. Going out, living your life with friends, and getting married.

What about those with 18, 19, or 20's being diagnosed with a none curable condition.

It is hard to live like this in this period of time were image is very important., unless you are a caveman.....

good luck

[phlika29]

Well I had rosacea in my twenties. I can only advise that shutting yourself away doesnt help at all. It doesnt lesson the flushing or stop the veins coming so why not at least carry on with life.

[witsend78]

Well I had rosacea in my twenties. I can only advise that shutting yourself away doesnt help at all. It doesnt lesson the flushing or stop the veins coming so why not at least carry on with life.


I totally agree.
Its a crappy hand of cards we've all been dealt, we have just got to play it the best we can.

[Mistica]

I would wager, that the majority of people on this forum who speak about being able to do anything they wish, have mild rosacea.
I have been through all the stages of rosacea, from mild to absolutely crippling, so I feel I can speak with some weight. It is certainly possible to modify ones life if their case is only mild. Life can still be enjoyed, but the worse rosacea becomes, the more difficult it is.
As I said the other day in a different post, there seems to be a misconception that appearance is the major problem.
Anyone who has severe rosacea wouldn't say that.

Rosacea is a disease, but sometimes there is this martyr type syndrome. 'I am not going to let it beat me! I am going to continue just like I always have!!!".
Yet, no one would act this way towards a broken leg, or a gash in the arm. The injuries would be treated tenderly until healing had taken place. If you continued to rub dirt into a wound, it would never heal.

[Mistica]

I think it is all bullshit, about living with this. Most of you here got this condition in your 40's. You lived your 20's withought caring about your skin. Going out, living your life with friends, and getting married.

What about those with 18, 19, or 20's being diagnosed with a none curable condition.

It is hard to live like this in this period of time were image is very important., unless you are a caveman.....

good luck

I agree with you. Managing such life altering events or diseases is far more difficult in the years of youth.
I began my battles when I was 23. First melasma, not rosacea. That appeared after trying to fade the melasma.
I had some terrible things said to me, which illustrates that appearance IS important. I know we all like to think we are spiritually evolved and appearance doesn't matter, but I think we are lying to ourselves. The fact is, we do care about looks. Appearance is important in the animal kingdom too. Consider the hilarious mating rituals some species engage in!
Personally, I would like think that while appearance 'is' important, the more evolved of us can overlook defects to find something attractive inside a person.
Inside most of us though, we want to look nice and we want the mirror to clarify this.

And let's not forget the physical side which is debilitating for some.

[RedFaced]

I would wager, that the majority of people on this forum who speak about being able to do anything they wish, have mild rosacea.
I have been through all the stages of rosacea, from mild to absolutely crippling, so I feel I can speak with some weight. It is certainly possible to modify ones life if their case is only mild. Life can still be enjoyed, but the worse rosacea becomes, the more difficult it is.
As I said the other day in a different post, there seems to be a misconception that appearance is the major problem.
Anyone who has severe rosacea wouldn't say that.

Rosacea is a disease, but sometimes there is this martyr type syndrome. 'I am not going to let it beat me! I am going to continue just like I always have!!!".
Yet, no one would act this way towards a broken leg, or a gash in the arm. The injuries would be treated tenderly until healing had taken place. If you continued to rub dirt into a wound, it would never heal.

Good point. Especially for those who suffer from Neuropathic pain. You can tell yourself that you will not let it change you until you are blue...or in our case, red, if the face but fact is, there are many things we cannot do and trying to convince yourself that you can still do these things will likely lead to a worsening of the condition and further physical/emotional pain.

I think it is about acceptance and dealing with your situation in the moment. I do believe that remissions are possible and that, if anything, should always keep you focused and optimistic.

I think people can get back to a point where they can do most things and be relatively symptom free - but to get there may take many months, even years of observing and managing triggers and also trial and error with medications, diet, and overall lifestyle.

You can accept Rosacea for what it is and continue on with your past lifestyle and habits or you can take a good hard look at your life and your triggers and work towards a remission. I think it depends on the person and how much Rosacea affects your life.

[Melissa W]

Hi Jenny,

I agree with you. The worse one's rosacea is the more it is potentially life altering but we do have some control over how we will let it affect us. When I am in the middle of a bad flare and the burning is really intolerable I do what I can to get relief and try not to get too upset as I know that will not help.

But I do agree with you Jenny because if you have an awful burning all the time it is hard to "suck it up" and continue along with your happy life. I for one do not like pain. I hate it. Pain makes this noise in my brain that makes it hard to concentrate on anything pleasurable.

I agree with Jason as well though. I believe he is really talking more about the appearance aspect vs the debilitating pain aspect. It seems as if many people are focusing on that aspect of rosacea whereas for me (as it is for you) it is much more about the burning pain. While my appearance is not unimportant to me when compared to the pain issue it really means nothing at all. So I have to agree with Jason in that if it is mainly your appearance that is affected, well, you shouldn't let that stop you from living and enjoying your life. You have 2 choices- you can feel sorry for yourself and become a hermit or you can get out there and live and enjoy your life and realize appearance is just superficial and it really is who you are on the inside that counts. I know this has been talked about to death but that's what it comes down to.

Back to the debilitating pain aspect of rosacea for some. That is a different story altogether and not so easy to enjoy your life through. In that case there is only 1 thing to do and that is to find whatever it takes to get relief so you can live a happy and normal life whatever that entails for you. So, I would never advocate giving up no matter how severe your rosacea is just as I would never tell someone who is living with a chronic debilitating disease to just give up as there is nothing you can do. No, I would say do whatever you can/must/need to so you can enjoy your life even while living with the chronic debilitating disease. And of course I would never say to a person suffering with such a disease to "suck it up" either but I might say that counseling could help one learn how to deal with living with such a disease. After all, there really is no other choice. And remember that this disease seems to go in cycles and flares so when you are in the midst of a particularly bad flare there might be some relief right around the corner. I look at Natalja for inspiration. She had a terrible time of it with very severe symptoms and now look at how great she is doing. All due to her perseverance and refusal to give up. No matter what. And truthfully I see all sides of this issue as I have been through all the aforementioned emotions and I can say with all due respect and clarity that no matter what, life can be great despite it all and is worth fighting for and not letting rosacea rule you.

Life is unpredictable at best for everyone and we need to face our life in the most positive way even with chronic and debilitating health issues. I know it is far from easy but through our struggles we grow as people. There are many successful and happy people living with chronic illnesses.

There will come a point in our lives when we will look back, and realize that we are not defined by our illness, but by the person we have become to spite it.

Being defeated is often only a temporary condition.
Giving up is what makes it permanent.
Marilyn vos Savant

All the best,
Melissa

[phlika29]

I would wager, that the majority of people on this forum who speak about being able to do anything they wish, have mild rosacea.
I have been through all the stages of rosacea, from mild to absolutely crippling, so I feel I can speak with some weight. It is certainly possible to modify ones life if their case is only mild. Life can still be enjoyed, but the worse rosacea becomes, the more difficult it is.
As I said the other day in a different post, there seems to be a misconception that appearance is the major problem.
Anyone who has severe rosacea wouldn't say that.

Rosacea is a disease, but sometimes there is this martyr type syndrome. 'I am not going to let it beat me! I am going to continue just like I always have!!!".
Yet, no one would act this way towards a broken leg, or a gash in the arm. The injuries would be treated tenderly until healing had taken place. If you continued to rub dirt into a wound, it would never heal.

I dont think you can assume that people that deal with their rosacea in a certain way have it either mild or severe. All I think it means is that everyone has different ideas about health and what it means to them, etc.

It was when I was in my late teens/early twenties that my rosacea was at its worst. My flushing used to last all day and was accompanied by pain and when not flushing tingling sensations. I used to turn almost blue and flush right down my left arm. I didnt have access to the internet then and was not under the care of any specialist. Anything set off the flushing including looking down at my desk. So I tried everything including shutting myself away and restricting everything I did. All I am saying is that in the end none of that helped and I only served to isolate myself and focus on my flushing. For me help came through the internet and finally getting referred to a knowledgable derm.

I do agree that having rosacea early on can have a significant impact on one's self indentity and that is perhaps harder for others to understand.

[J-Mill]

I would wager, that the majority of people on this forum who speak about being able to do anything they wish, have mild rosacea.
I have been through all the stages of rosacea, from mild to absolutely crippling, so I feel I can speak with some weight. It is certainly possible to modify ones life if their case is only mild. Life can still be enjoyed, but the worse rosacea becomes, the more difficult it is.
As I said the other day in a different post, there seems to be a misconception that appearance is the major problem.
Anyone who has severe rosacea wouldn't say that.

Rosacea is a disease, but sometimes there is this martyr type syndrome. 'I am not going to let it beat me! I am going to continue just like I always have!!!".
Yet, no one would act this way towards a broken leg, or a gash in the arm. The injuries would be treated tenderly until healing had taken place. If you continued to rub dirt into a wound, it would never heal.

I have to disagree with you, the extent of the Rosacea does not appear to be related to the perception of "disability" perpetrated by people here. In fact, my experience has been that the people with the biggest complaints by and large have the mildest Rosacea from the photos they post. The people whose photos I have seen on this and other boards with more severe Rosacea tend to be less obsessed with it. The complaints in my experience tend to increase with evidence of dysmorphic ideals.

As someone who has moderate Rosacea in terms of classic symptomology, a bad overlapping seb derm problem and neuropathic pain associated with Rosacea (all of which began brewing in my late 20's, although I have had bad flushing with burning sensations for years before that...just didn't know what it was) I don't see forging ahead with life as martyrism. Quite the opposite, collapsing in the fetal position and giving up would be martyrism - giving up your life for the cause as it were. I am not giving up on life, I am forging ahead despite some difficulties medically.

I do appreciate neuropathic pain associated with, I have it. There are however great pain clinics in pretty much every major city in the world. I wouldn't waste my time with a derm for this, they have no clue how to treat neuropathic pain. That being said this type of pain is not "special" to Rosceans, many people suffering from Parkinson's, MS, MD, Shingles, Fibro, Diabetes, Rheumatoid and a host of other disorders with neuropathic pain live relatively normal lives with proper treatment.

As for your analogy, a broken arm can mend, Rosacea is a lifelong disorder for many. Certainly proper treatment can amerilorate the symptoms, and push some into remission. By and large, however, waiting for it to just disappear before resuming something resembling a normal life is a fool's errand. It may never happen.

The worse your perception of your Rosacea is the worse life will be. If people won't accept that fact then it is their life to waste. Depending on your beliefs however, you may only get one try at this so why waste it.

[GJ]

I have to disagree with you, the extent of the Rosacea does not appear to be related to the perception of "disability" perpetrated by people here. In fact, my experience has been that the people with the biggest complaints by and large have the mildest Rosacea from the photos they post. The people whose photos I have seen on this and other boards with more severe Rosacea tend to be less obsessed with it. The complaints in my experience tend to increase with evidence of dysmorphic ideals.

As someone who has moderate Rosacea in terms of classic symptomology, a bad overlapping seb derm problem and neuropathic pain associated with Rosacea (all of which began brewing in my late 20's, although I have had bad flushing with burning sensations for years before that...just didn't know what it was) I don't see forging ahead with life as martyrism. Quite the opposite, collapsing in the fetal position and giving up would be martyrism - giving up your life for the cause as it were. I am not giving up on life, I am forging ahead despite some difficulties medically.

I do appreciate neuropathic pain associated with, I have it. There are however great pain clinics in pretty much every major city in the world. I wouldn't waste my time with a derm for this, they have no clue how to treat neuropathic pain. That being said this type of pain is not "special" to Rosceans, many people suffering from Parkinson's, MS, MD, Shingles, Fibro, Diabetes, Rheumatoid and a host of other disorders with neuropathic pain live relatively normal lives with proper treatment.

As for your analogy, a broken arm can mend, Rosacea is a lifelong disorder for many. Certainly proper treatment can amerilorate the symptoms, and push some into remission. By and large, however, waiting for it to just disappear before resuming something resembling a normal life is a fool's errand. It may never happen.

The worse your perception of your Rosacea is the worse life will be. If people won't accept that fact then it is their life to waste. Depending on your beliefs however, you may only get one try at this so why waste it.

I like this post and agree with it completely.

[Mistica]

Well I am going to disagree with your perception of what severe rosacea is.

These were my symptoms at my worse. Keep in mind, I have had rosacea in a lesser form as well, so I can speak from both experiences.

Upon my vitamin A induced massive flare, I experienced the following.

SEVERE flushing, which simply didn't stop. It completely engorged my face and neck, causing swelling and terrible pressure in my face. Not one inch of paleness remained. COMPLETE engorgement. Eyes, partially closed, minor nose bleeds on occasions.
This flushing didn't dissipate. The longer I left it unattended, the worse the engorgement.
I had ice packs attached to my face nearly all day and some of the night.
The doctors had never seen anyone like me and some refused to believe topical vitamin A could cause this. Well it did and out of all of us who used it, most suffered. I had the unlucky ticket. I was the worst case.

The neuropathic pain was terrible, as was the facial bone pain. Even my teeth ached. I couldn't sleep, couldn't eat, couldn't talk. I couldn't even open my mouth without more waves of blood surging through my face.
I was on two types of oral antibiotics, plus rosex ( useless in my case), I tried numerous supplements, I tried not taking any, I tried others. I saw two derms, GP and other practitioners. Red light therapy, IPL.

My partner couldn't even stand next to me without triggering more explosive symptoms.

My nose was constantly swollen and started to change shape. I feared I was heading for rhinophyma. My face was swollen and distorted.
Was I miserable? Of course I was!!!
The only relief I had was cooling my face with ice packs and while I knew about the risks of rebound, there are times when one has to weigh up the pros and cons and in my case, using ice packs proved beneficial. They were usually above zero in temperature and covered in tissues.
I couldn't freeze them quickly enough and we ended up having to get another freezer.
Pity I didn't think of sucking on ice cubes until much later. Such a simple thing, but for some reason I didn't think of it. Stupid really.

I spent six months in this state and six months in a slightly lesser state of severity. There was no way in the world I could have ignored it, as you claim is possible. Degree of severity DOES matter and I don't understand why you are blind to this.
You talk about the futileness of curling up into a fetal position. Well that doesn't even apply.
I was miserable as hell yes, but I was pro-active all the time. Constantly researching, looking for something which might help me.
I knew, the more I moved about, the more I did, the worse I became.
I wanted to live, not simply to exist and I sure as hell was going to try to achieve want I wanted. Remission!

Rosacea is a disease and inflaming it isn't going to help the body heal.
Each time my face heated up even further, I knocked it back with ice packs. Over time, I got minor improvements.
I couldn't even read, nor draw, activities I enjoy as mental concentration, the act of sitting and staring caused more flushing. At times, I couldn't even sit still. I had to gently move about the house, aimlessly. I use the word 'aimlessly', but it is inappropriate, as really, I was on a mission. I was at war with this beast of a disease.
Can you imagine going through all this in hot weather. Even with air con, the indoor temperature wasn't below 28C and often higher. Sometimes it hit 40C!!

My day was more or less as follows:

After a restless night due to the symptoms and sleeping propped up against three pillows, I would awaken with a hot burning face. As soon as I put foot out of the bed, the engorged flushing would start. I had to run to the freezer to get another ice pack. I would splash my face and then attempt to clean my teeth, which would result in a worsening of symptoms.

Ice pack on my face, I would walk to the kitchen where I took my tablets and had my cold glass of soy milk. All the time cooling my face.
Letting it go, wasn't an option. It simply swelled up even further. My partner used to say I reminded him of one of those cartoons, where the angry boss' face just about exploded. He wasn't being nasty. He was being factual. I was a deep crimson. Remember, I am Latin, with light olive skin. Latins dont usually have even pink cheeks.

I would then check my email, try and do a bit of researching, hoping that I would find something which would help me. I had to constantly get up and down to lessen the symptoms. Sometimes, I had to hold my eyes open.

I couldn't eat at the dining table. I had to eat in the lounge, near the air con vent. My food cut up into tiny pieces which I would eat with a dessert fork or teaspoon.

I struggled to do everything. Things which most people take for granted.
Oh to have a return of the days, where I had red outer cheeks and a few outbreaks. There was no comparison to what I was experiencing during the severe rosacea.

Mid afternoon I started to deteriorate further. I tried to prepare dinner before late afternoon, otherwise I wouldn't have been able to do it at all. I would get it ready and my partner would cook it when he came home. All oven baked, so nothing much to do.
I only ate cold food. Him at the table, me near the air vent.

Evenings and nights were a nightmare. I had ( and still have to) to go to bed by 9:30pm in order to try and avoid more severe flushing ( on top of what I already had) and additional swelling/pain. I couldn't breathe through my nose as it was swollen shut.
As soon as I lay back on the pillows, OFF it would go again and I would often still be awake at 2am or later. I would sometimes get up and walk about, always with ice packs. There was simply no other way.
Come 7am, I would start the same all over again. I would point out, this description is an edited one.

I tried more IPL. No one helped me. I had to help myself. My IPL was little use. More mistakes were made.

Due to all my efforts and some good luck, by May( after 6 months of hell), I was able to fly to Melbourne for one treatment on the Lumenis One. The flight there was manageable, but the flight back was a nightmare. The crew thought I was suffering from some kind of fatal malady and the Captain was alerted.
I lost much of whatever benefit I might have gained as I wasn't able to cool my face during the long flight.

I took a major step backwards and had to spend the next few months trying to regain some improvement. Upon my return from Melbourne, my partner had to fly to NZ to look after my little dog and also my mother who was undergoing a hip replacement. It should have been me who was going.
During six and a half weeks, I battled to fend for myself. Crying tears of frustration as I tried to change the bed linen, my face so swollen, I had to feel my way around the bed, as my eyes were hard to open.
We had a friend come in to visit and do grocery shopping for me.

I showed her photos from this forum and this brings me to one point you and I do agree upon J Mill.She and my partner have both said, on many occassions, there is simply no comparison between those photos and me. Nor the daily activities described.
I am a severe case. They are not.
However, I am fully aware I am not the only severe case. A few of us email frequently as we exist in an unique world.
You are right, most rosacea sufferers are mild to moderate, but I think it is a mistake to apply your one ideal to everyone. Degree of severity matters.
You assume an awful lot. You don't know any of these people personally and photos can be deceiving.

Also consider this. My efforts to try and improve my state, which have been exhausting, have resulted in some success. I have had to give up a lot to improve, but it has been worth it. Not to have pain 24 hours per day. To be able to breathe and speak again. To be able to get a fork in my mouth without my face becoming engorged. Not to have 24 hour flushing.
I am still FAR from normal, but I have made improvements.
My point is this, if I can move from a severe state, to that of an improved one, those who have milder rosacea can hope to improve as well, by modifying their lifestyle as much as possible. With medication and other things of use.

Your words of 'waiting for it to disappear', again, aren't applicable. Rosacea is a disease and the body needs a helping hand to fight it.

Trying to remain positive and have a good attitude are one thing, but one has to be realistic!

Also, I would like to mention, I personally know people with the some of the diseases you mention and some of them live horrible lives. Again, degree of severity matters.

The worse your perception of your Rosacea is the worse life will be. If people won't accept that fact then it is their life to waste. Depending on your beliefs however, you may only get one try at this so why waste it.

Again degree of severity applies.

I am actively trying to improve my quality of life and I believe most other people are trying to do the same, some more effectively than others.

I have been through so much, battling all the time, and quite frankly I find some of your comments completely absurd. A little naive perhaps.

I say all of the above, without the intention of causing an argument, but rather to allow enlightenment.

[phlika29]

Okay i think that it is time to let this thread die. It has gone so far off topic and just as we all feared Strangers post has only set about dividing members.

I see no difference between what either Mistica or J-mill are saying. They are both advocating that members dont give up on life but that treat your rosacea accordingly. It is never a good idea to start trying to compare people's rosacea and the way that they deal with it. What is clear is that it seems that everybody agrees that perception is half the problem.

Having rosacea is not a competition and we need to be careful not to alienate people. Many members come to here with less severe symptoms and we need to help them to maintain this state and improve if possible.

With regards the detailed description of severe rosacea i am concerend that this will worry other members unduly. It needs to be pointed out that these sort of flairs are rare and often caused by an irritatant that may not be easy to identify. However if these sort of flairs do happen they can be brought back under control and improvements made once again. I was on an antibiotic for many years (for acne) and it was not until I stopped it did I realise just how much it added to my flushing.

everybody is equal on this board, everyone is welcome to use the information here freely and hopefully we can all get ourselves to the pre rosacea state.

[Melissa W]

It would be very helpful if we had a thread that was devoted purely to success stories of which offhand I can name a number of people here. Banshee, Natalja, Peter, Claudia and others that I cannot remember now. Anyway, that would be very constructive especially for newer members who are not familiar with their stories. If anyone reading this feels this applies to them please start a thread and perhaps we can go from there yes:

[Mistica]

Actually, amid other points I was trying to make, I rather thought I was relating a journey of some success. From one of severe rosacea, to not so severe.
I may not be any where near normal yet and maybe I never will be, but I am certainly a lot better than what I was.
Personally, I considered this to be rather inspirational to other sufferers, especially if the journey ahead of them isn't so long and so full of obstacles.

Natalja can't be regarded as being in remission either by the way. She has improved though which is pleasing to hear.

[phlika29]

Alex did start a success thread a while ago but it is hard for people to feel that it relates to them and so hasnt really taken off.

http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?t=15563

[TheMediumDog]

mmm, if anyone can suggest a better way of organizing a success thread, do tell.

[dpart]

mmm, if anyone can suggest a better way of organizing a success thread, do tell.

Create a new subforum and call it Success stories. Make some rules about how to post in this subforum such that every new thread is a new success story, no other threads allowed. Discussion in each threads is as normal. Move all success stories into the subforum, and voila we have a nice collection of different success stories. The future ones will in addition follow your template to make it even better.

[TheMediumDog]

I've suggested this before but my fellow mods won't have it. I forget the reasons. Probably sensible ones.

[Melissa W]

What I meant was a thread that tells of personal successes in dealing with rosacea and I do agree with dpart in that should be the main focus of the thread. Jenny, I do consider Natalja a success and that is the point I was making. I never used the word remission. I also consider the steps you took to go from severe to less so a success as well. I am using the word success to mean any small steps as well as big ones. That is where it starts anyway. With baby steps yes:

[Melissa W]

How about a simple thread just titled personal success stories without any designed format placed in the general rosacea section?

Something like this:

http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?p=216400#post216400

[valby]

A few things I have observed. I believe we all have our ups and downs with this disease but in the end we are all fighting for the same thing which is to control our symptoms. I have personally struggled with my rosacea not totally because of how severe it is (which it is not, it is moderate) but because I can't tolerate any of the usual meds. So I can't take antibiotics to control outbreaks (which drives me nut because they work so well!).

By the way I also have neural pain from a condition which is rheumatic and whilst it hurts a lot I can say the neural pain on my cheeks drives me up the wall. I wholeheartedly feel sorry for anyone suffering this kind of pain because it brings attention to your rosacea 24x7.

That said we all have to remain optimistic that we can find a way to control our symptoms so we can not only get on with life, but damn well enjoy it. There is not point however being all Pollyanna with someone who is suffering severely--they obvisouly need help and often I think the biggest prob is finding a derm with expertise in rosacea and the physical and psych problems it poses. I am still searching and hope derm #3 is the one. I know that Mistica has had major probs finding a knowledgeable derm too.

Things that have helped me are: Mirtazapine (remeron), low dose accutane (but very low dose), rozex gel and fingers crossed sulfacetamide lotion. Mistica kindly put me on to the idea of using a compounding chemist, because in Australia things are often not available. This has been a life saver as I have my roaccutane compounded into 5mg tab and the sulfacetamide/sulphur solution made up. I would recc any rosacea sufferer to find a good compounding pharmacist so that you can have things adjusted so you can tolerate them.

[phlika29]

I've suggested this before but my fellow mods won't have it. I forget the reasons. Probably sensible ones.

Indeed they arelaugh:

[TheMediumDog]

whistling1:

[HappyVintner]

I was on Yasmin (birth control) for several years and went off of it recently. My rosacea was controlled by the Yasmin but came back with a vengeance when I went off the pill. The particular thing about Yasmin is that it contains a potassium sparing element so you tend to have a little extra potassium in your system when you use it. I have also read that some people with eczema have a potassium deficiency. I don't have eczema but it is a skin related disease. I decided to give taking potassium supplements a try. I take one 99mg supplement in the morning and one at night. I believe the the RDA for potassium is 99mg so I am taking twice as much but not a whole lot. My rosacea cleared up in a week and only starts to come back if I forget to take the supplements. I noticed by the way that when I went of the Yasmin I started getting some twitching in my face muscles which can also be caused by a potassium deficiency.

You do have to be careful not to take too much potassium so if you want to try this you will probably want to check with your doctor regarding what dose would be safe to try. I'm not sure if this works with all rosacea, but it really worked with mine and I can't understand why I don't see mention of it elsewhere.

[Melissa W]

Hi HappyVintner and welcome to the RF hi:

What are your rosacea symptoms? Do you have p&p's/flushing etc and what other treatments besides Yasmin and Potassium have you tried in the past?

Thanks for sharing!

Best wishes,
Melissa

[chenoarae]

I thought yasmin helped control rosacea b/c it has spironolactone in it? is this not right?

[BingoBangoBongo]

I have for the most part.

I made a long thread about it in the introduction forum.