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Thread: IOWADAVID and others PLEASE HELP ME!!!!

  1. #1
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    Default IOWADAVID and others PLEASE HELP ME!!!!

    Hi,

    I'm a 39 old woman from The Netherlands. Always been interested in science based skincare and made my own products. People complimented me for having such a beautifull PALE complexion. The Diane BCP kept acne at bay. Picture perfect skin!


    Since 2009 I got the subtype 2 P&P Rosacea. It came back every year in september and got minocyclin for 1 month. My skin was than perfectly clear for 1 year. I got minocycline in 2009, 2010, 2011 and got allergic to it last september 2012.

    I got Efracea got it for 70% under control and with eryacne 95%.

    A few months ago I got a tingling hot sensation from my neck (!) and ears (!) to my face. I looked in the mirror an thought I would see a red face but there wasn't anything to see. A week later the same happened and my face looked more tanned, a little red. With my knowledge from the types of rosacea I came to the conclusion that I also developed the (neuro)vascular Type 1 rosacea. I searched on the internet and read lots of postings here. I went to a dermatogist with some scientific studies and information from this website. She didn't want to read the information. Yes, she confirmed the vascular type and precribed Rosex...
    Dermatologists here are totally clueless and their knowledge is so dated.

    The last few months my face looks not as pale anymore but "healthy" tanned and/or more red. The last weeks I have had the stinging and burning almost every day. Horrible; like having acid on my skin. I literally could not functioning from the burning pain. My face feels hot at this moment....

    I contacted another member, Nat007. She telephoned me and send me some e-mails and advised to use Mirtazipine 15 mg, Propanolol and Clonidine. She is so helpfull. My GP finally believed and trusted me and prescribed me the medicines.
    This week I first started with the Mirtazipine (Remeron). It gave me a very uncomportable side effect; tingling, itchy,stinging and prickling sensations allover my body. I stopped after 2 tablets , read the leaflet and contacted my GP. These side effects would be still there for 7 or 8 days according to my GP. The leaflet also confirmed it and it would not be temporary. I had to stop the Mirtazipine (Remeron)
    Then I tried the Propanolol, 1 tablet 10 mg. I got almost the same side effects as with the Mirtazipine. Again the leaflet and GP confirmed it. I am so depressed that both medications are no options for me.

    I already read the leaflet from the Clonidine and the abnormal skin sensations are exactly listed there as a side effect.

    At this moment I'm a nervous wreck, I lossed 12 pounds and got really skinny. I already don't want to leave my house. I have panick attacks night and day when I realize that I am stuck with the hot flushes and/or flushing/burning and that my face and ears will become redder and redder...

    I have a wonderfull husband an 2 sons (age 7 and 9) but the last weeks I could literally not be there for them and had to stay with my parents to calm down. I also have ME.

    This weekend I am at home. I spend my time on this site and hope to find something here that could be of help...

    DavidPescoe, did you have the same burning, stinging and could you PM me about the red light?

    Every help from all members are welcome.

    PLEASE HELP ME!

  2. #2
    Senior Member IowaDavid's Avatar
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    Hi!

    I'll share what I can as far as help.

    So, remeron, propanolol, and clonidine are out because of side effects? You may try a script for nadlol, though this may have the same side effects as propanolol.

    I would ask for a script of clonazepam. Maybe not to take long term, but to help near term. It should do some to calm you down and also should lower your heat sensitivity a bit. Probably will make you a bit sleepy, though.

    There are powerful anti-inflammatory nutritional supplements you can take: curcumin, N-Acetyl Cysteine, Taurine, Creatine, L-Carnitine, Alpha Lipoic Acid, Coenzyme Q10, grapeseed extract, drinking green tea.

    I will PM you, though.

    Hang in there!

    David
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  3. #3
    Senior Member IowaDavid's Avatar
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    Oops. I can't PM you. You're too new. You'll have to get a few posts in, first.

    What can I do to help explain red light therapy as a treatment modality?
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  4. #4
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    Quote Originally Posted by Annelou View Post
    Hi,

    I'm a 39 old woman from The Netherlands. Always been interested in science based skincare and made my own products. People complimented me for having such a beautifull PALE complexion. The Diane BCP kept acne at bay. Picture perfect skin!


    Since 2009 I got the subtype 2 P&P Rosacea. It came back every year in september and got minocyclin for 1 month. My skin was than perfectly clear for 1 year. I got minocycline in 2009, 2010, 2011 and got allergic to it last september 2012.

    I got Efracea got it for 70% under control and with eryacne 95%.

    A few months ago I got a tingling hot sensation from my neck (!) and ears (!) to my face. I looked in the mirror an thought I would see a red face but there wasn't anything to see. A week later the same happened and my face looked more tanned, a little red. With my knowledge from the types of rosacea I came to the conclusion that I also developed the (neuro)vascular Type 1 rosacea. I searched on the internet and read lots of postings here. I went to a dermatogist with some scientific studies and information from this website. She didn't want to read the information. Yes, she confirmed the vascular type and precribed Rosex...
    Dermatologists here are totally clueless and their knowledge is so dated.

    The last few months my face looks not as pale anymore but "healthy" tanned and/or more red. The last weeks I have had the stinging and burning almost every day. Horrible; like having acid on my skin. I literally could not functioning from the burning pain. My face feels hot at this moment....

    I contacted another member, Nat007. She telephoned me and send me some e-mails and advised to use Mirtazipine 15 mg, Propanolol and Clonidine. She is so helpfull. My GP finally believed and trusted me and prescribed me the medicines.
    This week I first started with the Mirtazipine (Remeron). It gave me a very uncomportable side effect; tingling, itchy,stinging and prickling sensations allover my body. I stopped after 2 tablets , read the leaflet and contacted my GP. These side effects would be still there for 7 or 8 days according to my GP. The leaflet also confirmed it and it would not be temporary. I had to stop the Mirtazipine (Remeron)
    Then I tried the Propanolol, 1 tablet 10 mg. I got almost the same side effects as with the Mirtazipine. Again the leaflet and GP confirmed it. I am so depressed that both medications are no options for me.

    I already read the leaflet from the Clonidine and the abnormal skin sensations are exactly listed there as a side effect.

    At this moment I'm a nervous wreck, I lossed 12 pounds and got really skinny. I already don't want to leave my house. I have panick attacks night and day when I realize that I am stuck with the hot flushes and/or flushing/burning and that my face and ears will become redder and redder...

    I have a wonderfull husband an 2 sons (age 7 and 9) but the last weeks I could literally not be there for them and had to stay with my parents to calm down. I also have ME.

    This weekend I am at home. I spend my time on this site and hope to find something here that could be of help...

    DavidPescoe, did you have the same burning, stinging and could you PM me about the red light?

    Every help from all members are welcome.

    PLEASE HELP ME!
    Oops, did you mean David Pascoe? That's okay.. I would suggest having your hormones checked, honey..

  5. #5
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    @ Dave

    Thanks so much IowaDavid, a couple hours ago while I was sleeping I felt this tingling hot/burning feeling from the shoulders/neck/ears to my face. I think that my scalp is also a bit tingling and warm. I'm a couple of hours further and still got this hot tingling feelings without the burning. My face is reddish. Is it possible for rosacea to spread the heat to the upperback because I feel some heat spreading. Is this possible for rosacea? Are there more people with this condition?
    I'm so desperate...
    Last edited by Annelou; 27th April 2013 at 10:39 AM.

  6. #6
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    Quote Originally Posted by IowaDavid View Post
    Oops. I can't PM you. You're too new. You'll have to get a few posts in, first.

    What can I do to help explain red light therapy as a treatment modality?
    Thanks so much IowaDavid, a couple hours ago while I was sleeping I felt this tingling hot/burning feeling from the shoulders/neck/ears to my face. I think that my scalp is also a bit tingling and warm. I'm a couple of hours further and still got this hot tingling feelings without the burning. My face is reddish. Is it possible for rosacea to spread the heat to the upperback because I feel some heat spreading. Is this possible for rosacea? Are there more people with this condition?
    I'm so desperate.

    How can red light help when it spreads from the back/neck to the ears and my whole face?
    How much posts must I leave so that you can PM me?

    Is very low dose roaccutane an option?
    Last edited by Annelou; 27th April 2013 at 10:44 AM.

  7. #7
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    [QUOTE=Annelou;282451][QUOTE=IowaDavid;282417]

    Iowadavid (and others who are willing to help me),

    I can't post my whole reponse. I got a "forbidden" reaction. So I have to cut my response in several posts.
    Very strange!
    Because I have several locations where the rosacea flares up I wonder if in theory IPL or other external treatments could give good results. Although I will not do IPL because of the negative experiences I've read.

    My face and the rest (ears/scalp) are still hot and don't calm down.

    What would be my best bet after the failure of Mirtazipine, Propanolol. Nadenol ends also on"ol" and I am a little scared that side effects will occur again.

    Yes, offcourse supplements could help but I have tried some without results.

    For some proponol gives almost immediate relief. It is just 1 tool from the toolbox, I know that most of us probably need more tools. How to get a remission or a noticable relief from pain and redness? I read that very low dose accutane could be an option.
    I have some 10 mg pills here but how to get the 2 gram or 2.5 mg dose?

    Any thoughts/experiences about going the very low dose Roaccutane way?

    My english is far from perfect, sorry for that!

    I'll keep checking all responses every few hours. Just some relief from pain and redness, just some hope that it can get better?

  8. #8
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    Quote Originally Posted by dosia View Post
    Oops, did you mean David Pascoe? That's okay.. I would suggest having your hormones checked, honey..
    Thanks for responding. I already checked the symptoms but I don't have the normal menopausal flares.
    Why do you think it could be hormonal?

    The burning painfull feeling is not like the hot flashes you see in menopause.

    Your input is welcome!

  9. #9
    Senior Member IowaDavid's Avatar
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    Quote Originally Posted by Annelou View Post
    Thanks for responding. I already checked the symptoms but I don't have the normal menopausal flares.
    Why do you think it could be hormonal?

    The burning painfull feeling is not like the hot flashes you see in menopause.

    Your input is welcome!
    Yeah, this doesn't sound like rosacea to me. Almost sounds like an allergic reaction. Or something hormonal. The reason it sound systemic is that rosacea (as you know) typically stays on the face--it doesn't go to the scalp and back.

    I would make an appointment with an internist or allergist or naturopath--someone with experience diagnosing systemic allergic reactions, hormones, or organ systems (like thyroid) that can be put out of balance for whatever reason. From what you're describing, I don't know if red light would be a good choice for a treatment option.

    Possibly this is related to your sympathetic nervous system being overworked. Maybe adrenals? Dunno.

    I'm not a doctor, obviously. I'm sorry i can't help much more. If you do get a clonazepam script, it would be interesting to see if this has any effect on your symptoms.

    This kind of reminds me of stories I've read on the flushing/blushing forum. They can have neck and head involvement in their blushing/flushing symptoms.

    But I'd definitely try to see someone about a diagnosis or getting some tests for internal concerns.

    Best,

    David
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  10. #10
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    Default its good stuff

    Quote Originally Posted by IowaDavid View Post
    Yeah, this doesn't sound like rosacea to me. Almost sounds like an allergic reaction. Or something hormonal. The reason it sound systemic is that rosacea (as you know) typically stays on the face--it doesn't go to the scalp and back.

    I would make an appointment with an internist or allergist or naturopath--someone with experience diagnosing systemic allergic reactions, hormones, or organ systems (like thyroid) that can be put out of balance for whatever reason. From what you're describing, I don't know if red light would be a good choice for a treatment option.

    Possibly this is related to your sympathetic nervous system being overworked. Maybe adrenals? Dunno.

    I'm not a doctor, obviously. I'm sorry i can't help much more. If you do get a clonazepam script, it would be interesting to see if this has any effect on your symptoms.

    This kind of reminds me of stories I've read on the flushing/blushing forum. They can have neck and head involvement in their blushing/flushing symptoms.

    Rosacea is a condition caused by a malfunction in the nervous system producing varying types of skin lesions.

    But I'd definitely try to see someone about a diagnosis or getting some tests for internal concerns.

    Best,

    David
    .
    My opinion is basically that this person has stopped sweating in the affected areas and is actually due to a disturbance in the sympathetic nervous system. It is no coincidence that when there is a disturbance in the sympathetic nervous system that equal sides of the body are both affected. Both arms, both eyebrows, both legs or arms, face, or whichever limb.

    The biggest problem in all cases and why a solution cannot be found is; it absolutely nothing to do with the skin!!!! The skin is simply the end result of the invisible cause from inside. Basically there is no cure for the end effect because the cause is actually hidden. The only reason why there has been no cure is because rosacea is a misnomer and for this reason rosacea has fooled people for centuries.

    It really comes down to the fact that there is a disturbance in the normal nerve signalling to the sebaceous glands and is and only and ever can be "self- treatable".

    What I am saying you can try everything under the sun but in the final analysis only you have the ability inside yourself to reactivate your sympathetic nerves.

    When the diagnosis is wrong it must follow therefore the treatment must be wrong!!!
    Last edited by drummond; 27th April 2013 at 07:49 PM.
    cure

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