22 August, 2012

Summary from the last years II


November/December 2006

Just saw my derm and he was very pleased and even a bit intrigued it seemed with the latest improvements. He wants me to continue with the gabapentine (neurontin), together with my other meds (YESS!), I was armed with some very bad and red before pics and pale after pics and with medical references about gabapentin working for hot flushes. There were 5 docs there gathered and they were impressed luckily. They wanted to keep the pics for documentation and said I was an exceptional case for them, since I'm the only one in the hospital that has such a bad case of vascular rosacea and flushing. Hmm, what an honor... :/ So far it seems that my strategy to attack my flushing from different angles is paying off. Low dose accutane is still another option, but I can't use it on top of all the other meds I already take probably and besides that, the dermatologist still wants to experiment with small scale IPL and Yag lasers treatments in the upcoming 4 months time. Since my other test patches are still a bit paler (both the IPL one and the YAG). No more full face treatments EVER for me, according to him (he agrees with Dr Chrouch on this one), but IF it does help locally, we will be facing a very long treatment plan...Luckily I don't seem to have to pay for them, since this is a professional hospital and no private clinic :)  However, I am a bit skeptical and am only going to try another small area treatment with the machines here, to give it a chance. But my main trust and expectations are with Dr Chrouch, and not this old fashioned machine in this general hospital, where I have the dubious honor to be the exceptional case .. :S The gabapentin (neurontin) definitely makes my face less painful! Especially the right cheek burned non-stop before, no matter if it was red or pale and strong anti-inflammatories didn't help to calm any of that down. Now I only feel pain and burning when I have a real full face flush, which happens every day for maybe 30 minutes, usually around 18:00 when my body temp rises I think.. I found many links for gaba helping with menopausal hot flushes, which are in essence sort of similar to our rosacea flushings (linked to the sympathic nervous system being overactive or out of wack), according to my derm. So that might help, just as the fact that my face burns less and that by itself triggers less flushing. However there are also bad developments: the last 4 days I'm getting big red p&p's over my cheeks. Usually I never have them. And my nose cold just doesn't resolve: have had it now for almost the full time that I shave used this drug. The p&p's worry me the most. Not sure if the gabapentin is causing it. Did taper my dose down a bit today and maybe I will continue to do this and see if the skin get's better. But even on this lower dose the right cheek starts to burn and hurts and throbs again. :(  This is not the way I would have liked things to go.. To be continued



The rash continued for a week, before I became suspicious of the glycerin that the shell/capsule of the pills is made of.


This might sound crazo, but I do have a weird immune system, that seems to react with flushing and inflammation to other substances, like gelatin or latex. I checked with the manufacturer and it appeared to be made from gelatin, made from pork skin. Ahum... I react to that stuff. So before stopping neurontin I decided to take it without the shell and most of the bad acne is gone by now. BUT, after 3 weeks I felt my flushing became worse again and after each dose of neurontin the flushing actually increased for a while. I found out that vasodilatation and hypertension are mentioned as appearing “frequent”, although this varies with different sites on the net, and others say it is only happens in 1% in controlled trials. My blood pressure increased from 90 over 68 to 120 over 80 (I have a little measure device). That is not good. And I've become very suspicious about the vasodilatation. Since I tapered off the gabapentin this week the pain in my cheek is back but hopefully I can convince my derm. to try another medicine. He will call me tomorrow. I’ll ask him for another painkiller: I checked the internet again, and looked for neuropathic pain. There is a special condition, when one side of the face has neuropathic pain, atypical facial neuralgia or something. Anyway: I checked all the medication that is mentioned there. Amitryptiline is an antidepressant that helps often for burning pain, but I used it a little while 3 years back and it made me flush very badly, so no more. The pharmacist later explained to me that it opens up the little blood vessels in the face, so that it was on the cards. There are other drugs, like SSRI’s (Paroxetine, Citalopram Effexor). To me carbamazepine (Tegretol) seems my best next shot. I checked it’s side-effects and they are usually mild and have nothing to do with hypertension, vasodilatation, flushing etc. Rash is mentioned unfortunately, but that’s the case with ALL anticonvulsants, and those are the drugs that can help blocking the pain sensations coming from the brain. I guess eventually there needs to be focus on why exactly my right cheek hurts and burns, even when it looks not very red. I will ask my derm this on the phone as well tomorrow.



December 2006   


I've been taking neurontin for about 3 or 4 weeks now and at first it worked wonders, making me more pale and helping a lot with my neuropathic and burning pain. But after a couple of weeks I'm getting the feeling that it actually starts to make me a bit more red and even flushed sometimes. Very difficult to tell though and lately my right cheek is playing up again and has another sunburn-like reaction, so I take diclofenac (NSAID) with it to hopefully calm this redness and burning/ flushing on the right side down a bit... I noticed that "vasodilatation" and "hypertension" are mentioned as "frequent" side effects for neurontin. That is not flushing (which is noted for Lyrica), but still not good news. I wonder why I seemed to get more pale at it initially.. So to be really sure I have continue taking it for some time. When I didn't se improvement and only deterioration, I stopped taking it for some time and I had less frequent flushing. Then added the neurontin again, being a proper scientific researcher by now (or at least trying to be) and yep, within a day and for the few days I took it again, I had increased flushing, after an initial 'paling' effect (that's not a word, is it?) So I'll start trying another painkiller by Monday; Tegretol (carbamazepine). Carbamazepine doesn't have vasodilatation, flushing, hot flash or anything mentioned as side-effect. Flushing is mentioned with all the tricyclics, and my pharmacist explained that this drugs can widen the little blood vessels in the face), modern SSRI antidepressant (which give facial flushing as well often), anticonvulsants like Carbamazepine, phenytoin, gabapentin (or Lyrica) and lamotrigine and eventually certain antiarrhythmics, such as lidocaine and mexiletine. Also there are opiods, but they can cause facial flushing AS WELL (SIGHT................). So for anyone else I would bet on either gabapentine, which is registred as helpful for menopausal hot flashes as well (does something with the calcium channels and regulates body temperature, which is promising for us), or the carbamazepine, which I will try myself by next week, so I'll update on that one as well. They there is Trileptal (oxcarbazepine), which is a derative from carbamazepine (Tegretol), like Lyrica from neurontin, but Trileptal has a high incidence of facial acné and derpession, and I rather give the Tegretol a fair chance first. Besides: Tegretol has a proven track for the treatment of neuropathic pain and Trileptal has still studies running for this.

Also have to add (shamed deeply) that I used a cool pack again 4 days ago and seemed to be back at square one with the right cheek: have a sunburn like reaction going on again, with redness, fierce burning, flushing and even some dryness/ scaling of the skin, so not good. I don't want to learn obviously :( Taking oral diclofenac now to help calm down the burn reaction and am at a low dose of gabapentin. Not sure at all now what causes what and it's a pretty difficult time for experimenting... UPDATE: ok, finally stopped with the gabapentin. It seams to really make my flushing worse now... Don't have a clue why it did work for the first weeks, but I stopped with it a while and then took it again in a three double blind trial mode, and the flushing went up, so I guess it has to do with the vasodilating action it can have.... Sad, but when I flush less I also have less burning and pain, so for me the priority lies with keeping my skin unflushed. It seems a bit like dragging water to the see if I continue taking this med and thereby aggravate the flushing : ( Another small chapter in this rosacea diary....



Januari 2007


Things are progressively getting worse again. My skin is very red and reactive all day and I flush and burn a lot more again. I'm not sure why exactly. I do notice generally that I am doing better in the summer than in the winter. The fingers of my hands are very swollen and red as well and last month a temporary replacing dermatologist wasn't too sure about it and made me undergo some more blood tests to rule out increased ANA levels and some systemic conditions. Last week she called and there was only one blood test back, but it was not good: there are an alarming amount of "cryoglobulines" in my blood and new tests are needed to find out of there is an underlying condition, like lupus or others..I was tested on lupus before, and it came out negative, but she said that is no guarantee and it might have been masked or something. 13 February I have to see an immunologist and he or she we will look further into this. Somewhere I hope something will come out of this, so that there can be something done about my inflamed face and blood vessels altogether. But I have had so many tests in the past and so many disappointments, that I am preparing myself for the old answer that there is nothing to be found and I have to deal with it. To be continued.. I am currently not taking any medication for the neuropathic pain, but I did start with clonidine this week. Instead of the moxonidine I have been taking for almost 3 years. In Holland the brand I use is not available anymore this year and the generic gives me bad headaches. Apart from that I started to doubt recently if it still works for me, giving the bad state my skin is in. I also read about one of the side effects of it being facial flushing and vasodilatation and that raised some alarm bells. I contacted the manufacturers and they tried to find out if the drug causes only vasodilatation to the main big blood supplying arteries in the body or also to the peripheral blood vessels, in the face and hands for instance. They came back on it 2 weeks later and couldn't find anything about it. Clonidine on the other hand does have reports of vasoconstriction of the peripheral blood vessels and it supposedly helps for hot flushes, so I discussed it with Dr. Tony Chu, my doc in London, who has good experiences with it and gave me the green light for it. I have been using it now for a couple of days, together with 30 mg mirtazapine (Remeron) at night, which still works ok for me (for the flushing and as a mild antihistamine and antidepressant) and propranolol (40 mg, 3 times a day, also for the flushing) AND fish oil at night. Will post some bad flushing pics later.


March 2007

I've been using clonidine for a couple of months now and so far I think my flushing and redness has decreased, overall. I do have bad days and good days though and I still flush badly from warm temperatures and all the other triggers. And I still use a fan most of the time (from a good distance, to avoid rebound flushing). On top of the clonidine I still use mirtazapine (AD) and propranolol.The AD doesn't work like an antidepressant anymore since I started clonidine, because it is an antagonist of it, but it does work as an anti-inflammatory and for the flushing still. I still can't use anything on my skin unfortunately. No sunscreen, or moisturizer or anything. It burns too much. So for the last years I just wash it with bottled water and that's it. I’ve had a test patch with the Nd:Yag and IPL (both Vasculight machine) in the hospital here in January. The IPL patch is invisible, the Nd:Yag one is very slightly visible. Since the test patches I made with Dr. Crouch in Swindon are still much better (more pale), I am planning on going back to his clinic after the summer. I find it easier to be positive and to deal with everyday life etc now, because I was in such a terrible state a year before. Back then I flushed all the time and could only stay a bit pain free in close range to the fan, and with cool air (12 degree or so, not above 15!). And chewing ice cubes and using cool packs. Even a trip to the shop was like hell, and I was deep red and flushing as soon as I came out of my 'zone'. Needless to say that is draining and deeply depressing. Right now this has improved, although I do use a fan when I can, but not too close (rebound flushing etc) and on low speed, and I can avoid flushing better now during normal day activities. But still it is a massive limitation to most of my life.. It influences every aspect of it and also my self confidence and feeling of freedom.. I would have loved to travel a lot more, but am sort of limited now due to temperatures, vaccination (can't take them) etc. Also with relationships it is a difficult combination, in every respect. And with jobs, going out etc. I can't go dancing anymore, like I used to and loved. Well, let me correct that, physically I can, but when you are burning hot in your face and bright red within 10 minutes of entering the dance floor area, or anywhere inside basically, that's just not like I want it to be or how I am used to it, I did have a proper amount of years of dancing before rosacea hit fortunately. But that also makes me aware of what I am missing out on. I often feel pretty sorry for myself :) I can't go out for dinners often, cause my diet is so limited and it is usually too hot inside a restaurant. My bf is not too keen on my 'Spanish Inquisition' tactics when it comes to asking the waitress about the menu details and that ruins most of the fun pretty soon. Sorry me once more :( Although i do go out often, to the pub or out for meals if I really want to. But not like before. Friends have to make a real effort when I come or when they come to me, since it is always quite cool at my house and I ask them to keep the temperature sort of low/medium at their place either when I come. That is a pretty subjective and vague terminology and I usually end up in a warm room anyway. Most people just don't get it. Even when I explain all this. It was a bit of a state in 2005 but things did improve a lot and I've been feeling lots and lost better overall I want to stress. Been leading a more normal life again, feeling I have the skin under some control again. I feel positive now probably because my rosacea is a bit better then in 2005 and I appreciate all the things I can do now that I couldn't back then. I can't be bothered anymore with how my face looks. Strangely (to me) most people think I look terribly healthy and girly (some even think I am 18 still!). I just want to avoid full face flushing, where the vessels stay dilated for hours. That hurts and burns so badly. General redness is not too nice, but of less importance right now..



23 march 2007

I woke up today with a deep red “mask” on my face. It felt tight and burning, like I had sunburned it badly. I know this feeling too well unfortunately. The week before I had mainly bad flushing and redness on my left cheek. The right one is usually less red. But last night a friend came over and insisted very sweet to make dinner, totally using my limited list of approved foods. She made delicious asparagus soup, with potato flour and some carrot, then mash from sweet potatoes, broccoli and carrots, then chicken fillet and potatoes and then pears as dessert. All very delicious, and later that night I wasn’t flushing too bad or anything, but I just woke up dreadful.. Not sure if there is a link with the food intake from last night. I also have been experimenting with leaving out the diclofenac (NSAID) anti-inflammatory medication I usually take at night (50 mg). I had a very sore stomach for a while and suspected the diclofenac. This might perhaps have had some influence on this current redness and flushing L I also stopped taking my fish oil tablets a few weeks ago, to check if this had any influence on my symptoms. Perhaps I’ll try adding these again soon. I’ve been watching Oprah Winfrey lately and she had a topic on The Secret: it is all about energy: what you feel and radiate is what you get back. So if you are very negative and expect bad things to happen, they will happen and you will attract bad energy. Might make sense although it all sounds a bit gimmicky and pseudo psychological to me tbh. I have a hard time often dealing with the very bad days. I try to stay positive then, remember myself that this bad flair will pass again, think positive, see the 'benefit' from suffering (it supposes to give strength of mind and spirit, make you appreciate the good things in life even more, have more consideration for others who suffer etc), and seek distraction in work or social things. But I can’t help but feeling worn out often then, and down. My skin is flaking, like it has been sunburned, from the heath that seems to come from within and I can’t put anything on it to sooth. I feel the strong urge to do something about it, but I have little choice. I feel alarm bells going off, saying “there’s something not right here in the body, fix it!”, but that fix is not there yet.. I’ll go out now and go for a long walk with a girlfriend, take my mind off of things.



3 May 2007

My skin is not doing too bad lately anyway. I am still on the same medication and added also another one; an antihistamine (Xyzal), which definitely gives me a relief from environmental flushing (pollen/hay fever) and developed allergies. I have spent 3 weeks in the south of France last months and despite my worries at first it was great. My skin was very good. Perhaps due to the lack of stress or the fresh unpolluted mountain air. I don't know but it felt like a big victory. These days I try to not focus on my rosacea too much. I know my triggers and try to avoid the worst of them, like sunbathing, severe heat, alcohol, many foods (although my diet has broadened a lot now I have less problems with histamine containing or -releasing foods), perfumes and stress. I chose for now to not mess with my skin in any way and keep things as they are, instead of experimenting a lot with new things, because I know now how sensitive my skin is to anything new that enters my system. This gives a lot of time, energy en space for other things, which makes me overall a lot more happy. But I still cannot pretend the rosacea is gone. I sleep still with a fan on low and have to drink ice water or suck on ice cubes when I am outside or anywhere warm, in order to prevent a major flush. The last week in France I had a kidney infection and had to take a massive and long antibiotics course, which really stirred up my rosacea for a week or two. The drive back home in a 40 degrees , hot car also worsened matters, but after a few days of giving my skin rest things have gone back to normal. Which is me having a rosy skin, but my skin doesn't burn too bad anymore, only when I get more rosy, or flushed. Then the bad heat and burning crawls back again, but in that case I can get my fan or cool packs for a      little while till the flush has died out again. This is a massive improvement to a few years ago, when I needed them almost 24/7 at a certain point and life was purely suffering, to be dramatic..


Hi, Things are going less good lately.
I had quite calm skin in
march and the beginning of April (with a lot of bad days sprinkled in between as well of course ..), but the last couple of weeks I got more and more flushing, redness and burning. But also a chronic running nose and sore eyes. Because it hasn't rained for something like 40 days now here and has been very warm ever since, it might have something to do with seasonal allergies. I already have problems with dogs and cats and parfumes.. So last week I tried a drug called Telfast (fexofenadine, an antihistamine). The first days my skin really calmed down and I already started to get overjoyed. But after a week I start to have more and more rosacea problems again. The last 4 nights were bad, whereas I normally never have these really bad flares at night anymore. And when I wake up and during the day my skin starts to look more an more red and flushed. So after the weekend I'll try to stop with the Telfast again and see what happens.. Am a bit disappointed about this, cause I thought for a little while I found the.... "egg of Columbus" they      call it here. The missing link perhaps. Apart from that I'm doing so so. When my skin is less reactive and I don't need to cool it all the time my energy levels raise again, as well as my general mood and I get out more. Now I need half of my energy to stay a bit cooled, things are less joyful again. I have applied for a job a few days ago, and got an invitation yesterday for a meeting. There will be 15 or 20 applicants, we meet in some hotel, need to do tests in groups and have individual talks and then they choose 3 people for this job. It is at a big state institution that provides loans for students. Will see, but they are not yet informed about my rosacea and the special workplace I need. I have a special welfare thing here in Holland because I can't work at a normal (= warm) workplace, and need a special room (if possible of course) where I can have ventilation and cool air. I'm very happy with this status, but also a bit insecure about it towards potential employees. Let alone other applicants! It is warm here, so I will take my fan with me. It's not that big, but still big enough to make me feel awkward. Can you imagine sitting in a interview and dragging your fan with you and just placing it between yourself and the interviewers, on your table in front of your face lol??? Well, that's what I am planning to do. What you see is what you get. I am pi**ing myself haha. To be continued.. I also had a test laser patch at the hospital here last month, with Nd:Yag, but it didn't turn too pale so far. A little bit, but it stirred my flushing up as well for weeks



Juli 2007

So I got the job! And I took out my fan and informed them in advance and asked if it would be a problem and they said no, not if you need it. :) I still felt a leper patient among the others. But I was picked with 2 others and I guess I can be proud of myself now. Even though the job doesn't appeal to me too much, and neither does the employer. I studied art history and love to do research and write about art, well I do that part time and unpaid for the university here, but I need money as well. So I basically have 2 jobs, and a minimal income. I work in a big room with others, but they gave me a place at a window where I can ventilate and they removed the fluorescent light above my desk for me (you should have seen the looks from the others haha). I tried to be social and chat with everyone and mention the immune problem casually and quickly moved on to another topic. Hope it all works out. The office was fairly warm though and I came back home flushed.


 


  



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