18 August, 2012

Summary from the last years

Summary from old blog updates from the last years




17 May 2006

Last week I lightened my hair in an 'adventurous' mood and although I tried my best to not get any of the bleaching stuff on my scalp, I do notice a definite worsening of my rosacea ever since. Lots of p&p’s all of the sudden for a week and more redness, burning and flushing. It actually seems to increase after time, weird enough. I’m just not sure if it is directly related to each other, but the last months it all went so well again, I can now tear my (blonde) hairs out. I just came back from a week in New York with my family and I was doing not too bad there. Yes, there was redness but it wasn't too bad and manageable with a fan and cold packs. I even survived the long haul flight and felt in control of the normal uncontrolled flushing and burning and redness attacks. The worst of the IPL treatment I had a month (+) before had subsided and I felt the diclofenac was helping a bit. It was a brilliant week, we stayed around Broadway and I saw Manhattan, Central Parc, Soho, China town, Little Italy, the Empire State Building, Brooklyn, Harlem we saw a musical, did a boat-dinner trip over the Hudson River, lots of walking and sightseeing, the Twin Tower memorial spot. I missed all of the museums, as my sister had another type of check list, but it was a lot of fun and I was glad we were outside instead of inside buildings. Flight back went well too, and then I had the exulting idea to lighten my hair. Especially for my mums wedding. That didn't turn out well.. My boyfriend was far from impressed with the hair color and I just have the feeling things are getting worse the last couple of      days skin wise, much more now then the first days after dying the hair. Will have to give it a few more days and hope things will calm down again and otherwise try to see my dermatologist soon. Feeling sad, although the hair color is not too bad actually. Right now my whole face stings, burns and is red again, but I'm not even sure it has anything to do with the hair dye, or with something else.. I made a separate blog post about this New York trip which you can read here


Seen my dermatologist yesterday and he thinks my rosacea has just become very active. Not sure if it from the irritation from the hair dye or something else. "For all we know it might be related to the floods in Suriname", he joked. But fact is that I am not only bright red, but also covered in red papulas, which I never had, and that I am burning and flushed. Again! It might be the fumes from the hair dye, who knows? The doc. didn't know what else to do, except perhaps low dose accutane in the near future.. And my face is getting worse with the hour. I just hate this condition so much and don't know how to cope with this setback again :( You think you can do a thing that millions of women (well, a LOT at least) do on a regular basis, something I did many times before I got rosacea, and then BOOM, I am faced again with the limitless limitations this wretched condition brings. I look terrible again, all puffy and bright red and swollen, and worst of all: I did it for my mums wedding (hence the trip to New York, as a wedding thing for her and his children) and now I'll be a big red tomato all evening probably. I'm not positive at all! I'm like a big sore red tomato right now and the stress of things deteriorating daily and a dermatologist who doesn't know makes me feel a bit desperate. Wished I never took any chance at all and left my hair for what it was. Stupid vanity!! Sorry for venting. I'll add some pictures of the Big Night to show the state of my sorry skin :( 

                                                             


Late May 2006

The wedding was nice, but I was seriously flushed as predicted. I had been cooling most of the daytime and brought my little fan over, just in case. But the hustle and bustle and the fuss there did make me flare up again. I had to pose for pictures and was feeling very self conscious. I just let the flush run it's course at some point, as it was so bad and such a flood of heat and hotness that I didn't think a cold pack or fan would help anymore. Sometimes I find that a flush 'dies out' by itself after a few hours. I managed to dance with my sister and at the end of the evening, having already skipped on the yummie foods to save my face, I thought 'what the h***' and grabbed some strawberry pies and other nice foodies and just ignored the painful face as well as I could. Managed to keep my smile up and only break a bit down in the car. Later that month I had another session with Dr. Crouch. After 4 different test patches, done with the Lumenis One with him, things seemed safe. They all gave a certain degree of paleness (lightening I should say, sometimes only visible after long and painstaking glancing) and little side-effects, apart from some extra flushiness for the first 3 weeks. The last test patch was made over 2/3 of my left cheek and we felt confident enough to start with a full face treatment by now. It was a bit painful, but not too much and after the Dr Patterson ordeal I was very tensed. After the treatment I was very red for an hour and then my face seemed to settle and became more pale again. The first 5 days were not too bad. I had some extra flushing and redness, but within the expectation range. Started to get positive and I checked for improvement daily and tried to stay cool calm and collected and busy with other things the rest of the day. However, on day 6 something seemed to click and I experienced severe redness and flushing and burning for days and night on end. Dr. Crouch considered this reaction as severe and wasn’t used to such a strong reaction to the IPL, so late. After the symptoms worsened he advised me start a short course of oral prednison. To calm the inflammation down. The dermatologist I saw at home in hospital felt better about a milder NSAID to start with and prescribed me diclofenac 50 mg, three times a day for a week. I’m now almost 3 weeks post treatment and the redness and flushing finally seem to calm a bit down. Not sure yet what the advantages of the IPL have been. According to both Dr. Crouch and the local dermatologist my reaction might indicate photo sensitivity, meaning that IPL and other light devices are not a first choice in the future. Laser, and particularly the Nd:Yag might still be an option though. To be continued.. 


A week later

The course of diclofenac really seems to have calmed things down and I'm happy to say that after one week of diclofenac my skin has calmed down considerably. I am even thinking about asking for a longer course, to see what benefit it will have long term. Maybe this drug is helpful for others, especially to calm down post IPL flares etc. It definitely hasn't had any bad effect on my (extremely sensitive) skin and extreme flushings. It also worked as a Painkiller Charm.
Really red and sore by now




My graduation from university



The party I arranged above an Irish pub in town was a bit of a nightmare.. I was soooo flushed and sore.. There were about 50 or so people invited and present and luckily they all seemed to be entertaining themselves, but I was on fire and had a hard time pretending I was fine. 




August 2006

Update: lately things are not as good as they used to be. I'm not sure if it comes from the IPL I had and the bad reaction afterwards, but I tend to flush much more and easier again and have a harder time again with my rosacea. A lot of bad days in one week, or month. I try to watch my diet closely and eat healthy. Lately I notice that being outside when the sun shines makes me flush terribly. Even walking in the shade. I bought a heat from Coolibar, as well as a special scarf that protects my face from the sun. Unfortunately I look pretty ridiculous, all wrapped up and I get loads of strange remarks out on the street. I try to ignore them and listen to my digital music instead, but things are definitely on a downer again lately. I still take the same medication. That worked well initially so I stick to it and think this is all triggered by the hair dye debacle and the severe response to IPL. The small area's look still good, Dr. Crouch things I am a very rare case according to him, who responds bad to big area's that are treated at the same time. We are still positive about future treatments, but only smaller area's at one time now. Time and money consuming unfortunately, but health comes first. 
Later in august: I think the worst is behind me, things are calming down again.













October 2006
I’m having problems with my right cheek ever since I fell asleep on an ice pack :S So silly... I can hit myself for it over and over again, but there's no real point. I felt a flush when I woke up in the middle of the night and took a cold pack from the freezer and wrapped it up in a cloth and wanted to have it on my cheek for only a little while, 5 minutes max, but because of the remeron, I fell straight asleep again (it really knocks you out half an hour after you took it, a real sleeping med actually as well). That happened while staying with friends in Ireland. Next day I instantly felt it was bad news, that affected cheek was stiff and burning and glowing and had some weird nerve pain. It has been one month now and the burning is pulsing, throbbing and almost constant. Nicely accompanied by redness. I will ask my dermatologist next week for a painkiller, but when I read about Lyrica, one of the side-effects mentioned is facial flushing! I know it is only rare, but still…we are so much more prone to such side-effects, with our bad blood vessels..


Update: just saw my dermatologist and convinced him to let me try neurontin, but My God what a hard work it was to convince him. Got myself sort of into a difficult situation now. My GP is a very nice woman, and open for almost all my requests. I always bring some medical proof to support my requests. I've seen her a lot the last month, due to this nasty cheek, and she just prescribed me an antihistamine I wanted to try; hydroxyzine. Now the assistant would discuss with her today about neurontin. In the meanwhile my dermatologist called, he's just back from holiday. I explained my problems and asked for a 2 week trial of neurontin. He agreed, thought it was a good way of trying to figure out if it is a neuropathic problem or not. Then the GP's assistant called me back, saying the GP DOESN'T want to prescribe me the neurontin, because it is for epilepsy she thinks, and she totally disagrees. That is very unusual for her.. to explicitly say no. I feel that she must have grown tired of my constant demands for this and that, and I'm like a walking medicine cabinet, lol. SO, now I do have a prescription for the drug for two weeks and the green light from the dermatologist, which is most important of course, but I don't want to piss my GP off, since she is a very nice woman and has been invaluable for me over the past years. I don't want her to get really annoyed once she reads in her memo's (they all share it in one electronic database thing) that I DO take that neurontin now. What's best? I was thinking to just try it out, discuss it with the derm. in 2 weeks time, once (if) I can continue with it, let him write her a letter or give her a call and explain it to her. Unconventional medicine it seems, but it just might help me, you know? SIGH! Rolling Eyes Why is it all so difficult sometimes. The derm says it is quite hard to damage nerves, especially when the skin itself isn't really burned or damaged. Which isn't the case with me. But the cheek is still clearly red and marked where the cold pack was and I feel it constantly throbbing and it feels like I had acid smacked on it :( To be continued..
*Ok, I take 300 mg. at night now, second night last night, and when I woke up I was pale. I mean PALE, as a ghost. It has been a long time back since I looked like this. Now, after I ate something and started being busy I am back to my pink cheeks and the burning is still there, but not as sharp. Also I don't feel so spaced out as Wednesday. Have a bit more headaches, but that should pass I reckon. I will continue this drug for at least one or two weeks and then see and evaluate. I will also buy a blood pressure measurer today. Can buy one very cheap, and check it daily. 

Update. I have to say first that I don't take too much of this medicine: usually people take up to 1200 or 1600 mg a day as an average, and my doc prescribed me 900, of which I take 600 mg daily now. One tablet in the early evening and one before sleeping. The first side-effect (dizziness, bad coordination etc) have passed luckily, pretty quickly too. I do have to say that I have a bad cold, full nose etc. Together with a long list of side-effects, this is mentioned as happening 'often', in my meds enclosure leaflet. But nothing too bad. I have a blood pressure measuring thing, because another side-effect that happens often is supposed to be hypertension, and I take already another host of pills to lower that... So far my blood pressure if fairly low, the way I want it (I have check ups with my GP and dermatologist every now and then and they agree this is still ok for me): I'm around 98 over 60, still while on this medicine and the diclofenac, which raises blood pressure as well. And the bonus question: Does it still work for my burning and flushing? I think it does. I have had a bad day, but that was due to going to the football (soccer), getting all over excited when my team came back from a 3-1 score in the last 15 (I say 15!!) minutes to 3-4 in the last seconds, so that made me jump on my seat a lot. I also sinned on some chips (BAAAAD for me) and having hot weather here isn't helping either. But I still am more pale then usual I would say and the pain has definitely become less sharp. See how I'll be at the end of the week.(And my team won, yeaahhhh).




End of October 2006

My face was burning again and stupidly I took a coldpack from the freezer last night, wrapped it up well, but... fell asleep on it, again! Woke up with a pulsating flushed cheek, super red. I took extra diclofenac pills today, to bring the inflammation down hopefully. My right cheek has been very painful for 2 weeks now, even when it looks pale sometimes. The pain goes all over the cheek, from the ear to the nose, so over the cheekbone of the cheek. It is a burning, sharp pain, almost electrical. On the apple of that cheek, my skin has started to flake a bit. I am sure the incident with the cold pack in Ireland has really damaged both the skin and the nerves in that cheek. I have been eating the following lately:

-white beans; cooked and then baked crispy in a pan with oil. It doesn't seem to make me flushed. It has not too much histamine, tyramine or salicylates, or niacin content (B3 - can cause a flush). 

-organic turkey meat

-soy beans

-sweet potatoes

-salad, with carrot, coconut oil, green beans and broccoli.

On Sunday I took 75 mg of carbamazepine. My skin was pink by then. At night I had a bad flushing attack however. Maybe I ate too many white beans! When I woke up my right cheek was burning and pretty red. And mt left cheek was red and swollen too. I don't know now if the carbamazepine is helping, or making me more flushed than normal. I also have to consider the chance that diclofenac is making the redness worse... One derm I see says it is fine to take for rosacea, another says that I shouldn't, as NSAID medication can worsen rosacea flushing and he compares it to steroids even (in the way it can trigger rosacea). I don't know what to belief and primarily want the nerve pain gone. because nerve pain means pain signals, means triggering of the blood vessels, means more flushing, means more pressure on the nerves, means more pain. I am getting exhausted by the worries and the constant battling of the nerve pain and flushing. I am actually a bit anxious at this point, a nagging background noise, constantly putting me on edge. I know from experience that anxiety makes my rosacea and flushing worse. Darn..... Also, as soon as I eat something and use my face muscles, the nerve pain gets worse. That isn't helping my anxiety either. My skin is pretty pink during the days now.






Start of November 2006

The week before my menstruation, my skin was terrible. Red, flushed and pimples on top. I went to a concert of Keane, an English band, on the 7th of November, and my skin behaved reasonably until the evening itself, when I stayed too long in a warm restaurant (oh the embarrassment of looking like a flaming lighthouse and people staring at me), and then in Ahoy I kept flushing. It was hard to enjoy the music.. I have stopped taking fish oil supplements, as I am convinced now it triggers my flushing and redness. High in histamine... fish oil.. I was silly to even try it I think.. The day after I stared mexiletine (50 mg) for the nerve pain. The hours after taking it, I looked fairly pale. But in the evening I had a football (soccer) match to attend of the local team in town, and it was a skin nightmare; so flushed and red. I was burning up. I ate lamb meat instead of turkey meat that day, so perhaps that was the culprit. Or the mexiletine.. Once I started flushing, it continued for the entire evening. The next day I went back to my old regime and my skin cooled down a bit in the ays after. On Monday I added a claritine antihistamine to the mix, which made me more pale for some hours (I should say: less red). But after dinner I was red and flushed for hours again. I had eatenorganic beef, potaties and sald. Bleh, what misery this skin condition is at the moment :( The good news however is that the nerve pain in my right cheek seems to slowly but surely decrease. I stopped fish oil altogether. Might try alpha lipoic acid and/or vitamine C supplements soon. I am taking less diclofenac also, I feel I get more red when I take it. 



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..

Oh and I had a mega flush after eating a bad of peanuts. Yeh what was I thinking... chuck full of histamine. It went OK for about half an hour after munching the bag full of them, then a mega flush came up and kept me up all night, with fan and cold packs. When will I ever learn. I also find that vitamine C tablets make me much more flushed and red. So exit multi vitamins in general for me. I had also cut down on my propranolol, god knows why, probably just to do something different in hope of improvement, but since I am back at taking 40 mg every 6 hours (so 4 times a day), I feel in general that my flushing is a little bit better controlled again. Although it's still a daily, hourly struggle to control the flushing and burning and redness I should add. I also went out to dinner with a friend and was a donkey, because I succumbed to eating a slice of pizza from her plate then feeling fatalistic about it, I ordered a huge ice cream with whipped cream for desert and wolfed it all down, also tasting my friends tiramisu. The weekend after my skin was a nightmare: very red and sore. I'm back on the health train now, taking 30 mg mirtazapine at night, moxonidine 4 times a day, propranolol 4 times a day and 1 50 mg pill of diclofenac at night. I also started to take fish oil again at night... I am so indecisive there, but I keep reading how it is supposed to control inflammation.






Late(r) December 2006


The nerve pain seems back lately and my skin is a right mess. Red, angry, flushed, painful. I'm tied to the house and the fan, what an utter misery this all is. My skin feels very tight and painful. I stopped taking fish oil several days ago, but don't see any effect, so still undecided on that one. My fingers are also red and swollen again. For several years, the doctor (GP) gave me penicillin for it, as a skin scrape (ell they took a round piece of skin out of my finger actually to investigate) showed streptococcus bacteria, but by now it has become clear that they were utterly useless (aaargghh, 2 weeks of pills for years and years in winter): I am having a condition called Raynaud's Syndrome! In hospital they put electrodes on my finger, then placed the hand in a bowl of water and slowly added ice cubes to the water, measuring my fingers blood vessels response. Raynaud's without a doubt. They advised against my anti flushing medication, and in favour of blood vessel DILATORS (shudder), but I said straight up that there is no chance in hell that I will take anything that makes my blood vessels dilate even more. They understood, going by my fire red face at that point. But penicillin is not going to do anything for my red swollen 'winter hands', we finally figured out by now. I just accept them. They're peanuts compared to my throbbing face. 


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.



Even later 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....






January 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.




February 2007

I am taking clonidine 0,75 mcg three times a day now and fully stopped with the moxonidine. I still flush at night, but I am also still taking 50 mg of diclofenac at night. During the day my skin is more pale now than when I was still taking moxonidine. I don't have too much trouble now during the days, as I said; the night time is most problematic still. 



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..

I noticed that even laser test patches on my face, sparked off a few weeks of increased flushing. meaning a LOT of flushing and burning. So even the skin that was not treated, gets extra red and flushed for several weeks afterwards. I think the injured test spot area, is the reason why extra flood flow is sent to the face (to that specific area, but in my case firing up all the faulty/overabundant vascular system). The body has about 3 weeks post laser or IPL treatment, whre it tries to replace the blood vessels that are supposed to be zapped away by the laser or IPL device. Its called angiogenesis and it is basically extra power to make new blood vessels and to nurse the injured spot back to health. Everything that increases my blood circulation to the face is a flushing nightmare, so I have had a rough patch post (test spot) treatment. My skin is just red all day long now. Again. The derm here in the local hospital also saw zero point zero improvement of the zapped skin, and is not too enthusiastic about my chances for laser. Bummer... Especially when reading success stories of other rosaceans in the forums.  Of course I started to get irrational thoughts again, overthinking it all, and started doubting the clonidine suddenly. As if clonidine can do anything about the post laser repair phase. I also have to add that I sleep with the window open at night and it is cold. I do get more red in winters. Still taking diclofenac at night but am suspecting by now that it worsens my colitis (inflammatory bowel condition). I just need to stop with that stuff, it is mostly wishful thinking at this point, that it improves my rosacea. So far it didn't and it might even make it worse. 



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.


Read further about my quite disastrous holiday to Bodrum (2007) here

 



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