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Thread: My struggle w/Rosacea (demi-sucess story)

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    Senior Member banshee's Avatar
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    Default My struggle w/Rosacea (demi-sucess story)

    Hi everyone-

    I guess I'll start with a bit of history for those who aren't familiar w/my story. I have the dubious distinction of being somewhat of a rosacea vetran. I was diagnosed when I was 19, I suspect I had it long before then, but at just 25 rosacea destroyed my life (I'm 31 now).

    I have erythrotelangiectatic R (full face & ears)..which I consider to be a very difficult form to get a handle on since the flushing can be SO intense. In some ways I'm very fortunate. I'm what I call a "flash flusher". I don't have much diffuse redness just some ruddiness, so I can look "normal" much of the time. However, on days my face is irritated or when I have my more intense flushes (nervous, angry, upset) you can surely tell. That has been reduced by 50+ laser txs which I'll talk about in a min...I can still feel marked heat & pain though if I don't watch my p&q's.

    My atypical case worked against me in the begginning. I had the invisible burning phemoneon for months where I had excruciating, deep seeded pain. It felt like someone had poored gasoline on my face and lit a match. And no one believed it could be the rosacea at work. I wish I was exaggerating when I say that I couldn't sleep for 4 months from the pain. Ocular rosacea also developed, I barely ate, & I became severely depressed.

    What brought it all on was a series of stressful events. I had my heart broken for the first time just a month before the rosacea hit, I had been on birth control which I suspect made my hormone levels like lighter fluid for my situation, used Neutrogena Healthy Skin moisturizer and that started my flushing. But it wasn't until I took one Paxil that entire face flushing kicked out (whole face and ears) and I haven't been the same since.

    I went to 40 doctors, grand rounds, and Mayo Clinic..even saw Dr. Kligman the world renowned rosacea specialist. And I walked away w/nothing more than clonidine & an Rx for clonidine. I was devastated.

    Despite the issues folks have w/Dr. Nase, I credit his book and rosacea-support for helping me learn what I have. That knowledge gave me the foundation to understand how to fight back. And It was in RS that I met Peter Waters & another gentleman who I became friends with who would guide me in the right direction.

    From Peter's pioneering of RLT, I began that and saw some improvement. For the severity of my condition, however, it wasn't enough since depth penetration is only 600-700nm. So I began Laserscope Lyra 1064nm YAGs (non-ablative). That's really when my condition started really turning around albeit very slowly.

    Based on Peter's story, & given my success w/the infrared YAG's, after a great deal of research I hypothesized infrared (which is light you can't see at about 800-1064nm, beyond that it heats just water) would be more effective for severe cases. I purchase an infrared system & it became key in maintaining my improvement.

    I'll try and bullet pnt what have been the most helpful therapies for me;

    Facial Rosacea

    1. Lyra/Aura laser treatments-On my face & ears. I was too afraid to do both at once (I get 1 pass of each per tx) so for 4 years just did the Lyra. It surely helped but when I added the Aura last summer, it made such a difference that I wish I had done them both long ago. I've had 50+txs at 6 week intervals & will do less now for maintenance.

    2. Infrared RLT- I have the DPL system. Now, for the past year or so I have been terrible with doing my treatments and it shows. My skin/flushing goes downhill when I do not do these.

    3. Supplements- (a) Omegas+flax (b) GlisoDin SOD-free radicals are high in the presence of marked inflammation (NRS studies on rosacea confirmed this) so your anti-oxidant system is overtaxed. This is a powerful antioxidant. RLT increases SOD btw. (c) Ester C

    4. Skin care has been THE most difficult thing to find solutions to. I have the wicked seb derm/rosacea combo which pretty much guarantees that your epidermis is always compromised in some form. Leading to sensitivity, irritation, & burning.

    I have tried all the things standard for rosacea, Tolerin dermo cleanser/moisturizer, Zia, Linda Sy Oatmeal, Good Skin, Clinique, Olay, Dermadoctor Born to be Mild, & the list goes on. Not to mention a million expensive compounded formulas w/pyrithione zinc & Nizoral. I've also just used cleanser twice a week for the SD, & tried to use a "gentle" one (like the Dermo), but if they don't irritate they dehydrate.

    So it seems I always have to choose b/w being dehydrated and flaky, OR ticking my flushing off.

    None the less I have found some helpful things: (a) Jojoba oil-essential to replacing the barrier. Put it on wet skin (a drop in water for each section of the face) before EVERYTHING if you have a case like mine. It will act like a buffer to reduce irritation. I use it on dry to remove face and eye makeup then rinse. It's not perfect, but it's one of the few things which calms my skin down (most of the time).

    (b) Dermalogica Barrier Repair- This does have a touch of glycol in it so it can irritate if you're already in flare. Be sure to wait 30 min after any cleansing to apply. Mainly it helps build up that barrier, is a great base for makeup, & does shield me from some environmental insults.

    (c) Everyday minerals-Basic, bismuth free mineral makeup. Ironically it accentuates my flakes less than liquid foundation. And most importantly, it's safe on my sensitive lids. It can however look chalky, but if you spritz with water after application, it will "melt" it more into your skin. FYI use a wet sponge to apply it on days your super dehydrated, works like a charm. I always use that technique on my lids to avoid dust irritation.

    (d) Cleanser- I just seem to do much better when I use only oil/water, but the SD gets out of control. But doing the oil first and then Aveeno Ultra Calming once in awhile is the least drying/irritating.


    Ocular Rosacea

    1. Thera Tears Supplement-helps your eyes produce more tears on their own. This supplement is paramount to my eye comfort.

    2. Thera Tears Preservative-Free Gel Drops

    3. Cleanse with bottled water only. Even filtered tap makes them dry & irritated.

    4. OcuSoft lid scrub-Occasional use, 1-2x per 2 weeks to remove SD along the lashes. The same rules that apply to facial skin apply to your lids. Barrier break down will led to more redness, flushing, swelling, & worse it will offset your tear film.

    5. The most tolerable makeup for me aside from Everyday minerals, is Clinique Gentle Waterproof mascara & KISS Me mascara. The first keeps lashes soft so your eyes don't get irritated. And the latter can make lashes stiff, but it removes with only water.


    Over the years like I mentioned, I used to clonidine & other various meds for the flushing & my other chronic health issues like GERD (antihistamines, PPI's etc.) Little did I know I had underlying dry mouth and these things made it MUCH worse. Despite impeccable oral hygeine, & extensive remineraliztion therapy, over this past year I developed extensive dental problems. And due to my sensitivity & the side effects from medication, I'm forced to battle all of these things naturally. So the irony is that at the beginning of this summer I actually felt like I had enough of "manageability" over my Rosacea to go on w/life, but my other chronic health issues still make depression a daily battle.

    In terms of the Rosacea though, I was quite severe and while I still feel the pangs & emotional scars of how it has affected me, there is hope. You are not a lost cause, there is more out there to help than the medical community would have you believe, and this condition is about so much more than skin and what you look like. Hopefully some day Rosacea will get the respect it deserves as a life altering, serious chronic illness.

    Sorry that was so long...I really hope something I said here can help someone. I have not posted in a long long time due to my struggles, & I probably won't be around too much, but I'll try and answer any questions.

    I wish for you all hope, progress, & peace of mind.
    Kristen
    Last edited by banshee; 17th July 2008 at 12:44 PM.

  2. #2
    Senior Member banshee's Avatar
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    Red face

    sorry for the typos

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    Moderator phlika29's Avatar
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    Banshee

    Many thanks for taking the time to write this detailed report. I will link it to the success sticky in the newbie section

    Best wishes

    Sarah

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    Senior Member banshee's Avatar
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    Quote Originally Posted by phlika29 View Post
    Banshee

    Many thanks for taking the time to write this detailed report. I will link it to the success sticky in the newbie section

    Best wishes

    Sarah
    You're welcome..only glad if it helps. Actually I added some things and corrected some typos past the 10 min limit. I didn't know there was one. I sent a note to the admin with another version (missed some typos still though lol) but I'm not sure if they can fix it. That's what I get for typing that on no sleep.

    cheers

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    Moderator Melissa W's Avatar
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    Kristen,

    I am so glad you are doing so much better and thanks so much for checking in to share your story!

    Best wishes for continued success!
    Melissa

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    Hi Kristen,

    It was because of your posts that I first tried the DPL unit about a year and a half ago, and like you have had a lot of success with it, so thank you for sharing your experience with infrared light and the DPL system. My previously mild ocular rosacea has become more severe in the last few months so I am going to try your suggestions of the Thera Tears and the OcuSoft lid scrub that you, Melissa and others have recommended.

    I do have two questions for you and I appreciate your contributions given that you're battling other conditions right now.

    If memory serves you live in Toronto (same here) and I'm very interested to know where you are getting the Lyra/Aura treatments. I've found a very good Vbeam doctor (Dr. Chan at the Baywood Clinic) but have always travelled far afield to get IPL and other treatments. I'd really appreciate if you'd share this information.

    Also, you mentioned suffering from depression and the fact that Paxil gave you a terrible flare. Have you ever tried Remeron which other members have found to be very helpful both for their rosacea and dor their depression? I would be interested in trying this and was wondering if you had any experience with it.

    Given the determination and strength you've shown in beating your rosacea, I'm confident you'll have similar success with your other trials. Best of luck!

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    Thanks for the detailed post, especially the points about ocular rosacea.

    Best wishes,
    Kristina

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    Senior Member banshee's Avatar
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    Quote Originally Posted by melissawohl View Post
    Kristen,

    I am so glad you are doing so much better and thanks so much for checking in to share your story!

    Best wishes for continued success!
    Melissa
    aw thanks Melissa...You're always posting to help people so thank you for that.

    Quote Originally Posted by Chelsey View Post
    Hi Kristen,

    It was because of your posts that I first tried the DPL unit about a year and a half ago, and like you have had a lot of success with it, so thank you for sharing your experience with infrared light and the DPL system. My previously mild ocular rosacea has become more severe in the last few months so I am going to try your suggestions of the Thera Tears and the OcuSoft lid scrub that you, Melissa and others have recommended.

    I do have two questions for you and I appreciate your contributions given that you're battling other conditions right now.

    If memory serves you live in Toronto (same here) and I'm very interested to know where you are getting the Lyra/Aura treatments. I've found a very good Vbeam doctor (Dr. Chan at the Baywood Clinic) but have always travelled far afield to get IPL and other treatments. I'd really appreciate if you'd share this information.

    Also, you mentioned suffering from depression and the fact that Paxil gave you a terrible flare. Have you ever tried Remeron which other members have found to be very helpful both for their rosacea and dor their depression? I would be interested in trying this and was wondering if you had any experience with it.

    Given the determination and strength you've shown in beating your rosacea, I'm confident you'll have similar success with your other trials. Best of luck!
    Hi Chelsey-

    I'm so glad that my posts could help you in some way. That's the best kind of news.

    OR can be more disconcerting for me than the facial rosacea just b/c there aren't many therapies to help it. I did visible red LED only on my lids and didn't find it to help much. So I started doing DPL w/eyes closed (you don't want to stare at infrared). It's a bit risky but the company said it was ok and I do think it has assisted w/swelling and lid flushing. I thought it was the lesser of the 2 evils compared to getting laser on eyelids.

    Take care not to use the lid scrubs too often. Daily imo will compound the dryness & lid flushing problems.

    I'm actually in Chicago so I'm afraid I don't know of any doctors in the Toronto area :\

    I attribute the Paxil with catapulting my case from mild to severe virtually overnight. It made me feel hot, agitated, & before then I had never seen anything like how my face/ears flushed. It was horrifying.

    I appreciate your suggestion for the Remeron. I know about it from Natalija's experiences & haven't tried it myself. Unfortunately Remeron has anti-histamine like properties so is drying to the eyes and mouth. I really wish I could take it.

    Exercise does help a bit for the depression but it's short lived. I also believe I'm low in B-12 which is essential for depression. Your body makes this from good bacteria and Rosaceans having to avoid all fermented foods (yogurt, coleslaw, cheese etc) probably are deficient. A probiotic may help.

    Quote Originally Posted by kristina b View Post
    Thanks for the detailed post, especially the points about ocular rosacea.

    Best wishes,
    Kristina
    You're welcome I'm pleased you could understand it through all the mistakes lol.

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    Senior Member banshee's Avatar
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    Oh-I had no idea there was a success story thread in the newbie section, so I'm afraid I didn't follow the recommended format. I thought I'd add a few things for folks reference:

    BASIC ROSACEA SUBTYPE(S) (if you know it/them) & SEVERITY
    (I Erythematotelangiectatic; II Papulopustular; III Phymatous; IV Ocular):
    I & IV


    SKIN TYPE
    (e.g. dry, normal, oily, hyper-sensitive, reacts badly to sunlight, thin, thick):
    Fitzpatrick type 2 (very fair but not redheaded fair), translucent but not thin, dehydrated (dry on cheeks normal T-zone), w/imbalanced sebum. EXTREMELY hypersensitive.

    CO-EXISTING CONDITIONS
    (e.g. seb derm, acne, allergies, candida):
    Extensive seb derm (full face/eyebrows)

    CURRENT MAIN SYMPTOMS & AREAS AFFECTED
    (e.g. permanent redness, burning sensations, stinging, nerve pain, spider veins, facial swelling, rhinophyma, lumpy skin, papules, pustules, ocular rosacea):
    Heat, occasional burning, sensitivity,


    ONSET AND PROGRESSION OF SYMPTOMS
    (i.e. when and how your rosacea started, and how it has changed):
    I began with pustules. But despite my full face flushing I do not get those often anymore since RLT. See main post for more detail.

    TRIGGERS
    (e.g. heat, exercise, food):
    Things which make what I call "flush/flare out"-when a flush sticks for hours or days before going down are; basically all the emotional flushes especially crying & anger...Heat, cold, exercise, strawberries (grr my favorite), sugar, dairy, reflux.

    Imo, the word trigger is a misnomer-blood vessels physiologically respond to everything. It's just a matter of degree. You can go nuts trying to find things that don't make you flush. Instead zero in on things that make you do it the least.

    MOST SUCCESSFUL TREATMENTS
    (and how each helped; please list only treatments pursued for at least 3 months):
    Lyra/Aura laser-kicked back intensity of full facial flushes, addressed diffuse redness

    DPL infrared-helps calm the sensitivity, inflammation, and flushes caused by accumulation of daily triggers. Also assists in reducing p&p's and eyelid symptoms.

    LEAST SUCCESSFUL TREATMENTS
    (and any problems caused):
    Metro cream & Gel (latter burned incredibly), Plexion, salicylic acid, IPL

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    Wow, I'm way off base on where you live. Too bad for me in terms of a recommendation for Lyra/Aura treatments, but I do love Chicago, what a great city!

    I'm finding Ocular Rosacea very hard to deal with as well. All of a sudden I have these dark purple, protruding veins on my eyelids that are really unsightly and the accompanying dry eye is quite painful. I used the DPL unit for almost a year without eye protection (the Marketing Manager I spoke to at the Distributors assured me that she hadn't had any problems doing so) but around the one year mark I started to get really bad dry eye (so bad it was hard to open my eyes in the morning and my eyes continued to burn throughout the day) so I attributed this to the DPL. Now I'm wondering if it's because of advancing ocular rosacea? Hard to be sure, but I'm now using goggles which is too bad because I think the infrared light does help subdue the veins on my eyelids, but my dry eye also seems worse when I don't use them, so I have to choose between the lesser of two evils.

    It's ironic that the rest of my face is looking and feeling pretty good right now, but my eyes are starting to really act up. I guess that's the nature of any disease or medical condition. If it can't be cured outright it will look for other ways to assert itself.

    Overall though, I feel like I'm in a much better place than I was ten years ago, so that is something to be very thankful for.

    Thanks again for your very informative post and for having recommended something that has really helped me!

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