22 August, 2012

Do I have rosacea? What to look for. + Summary from the last years I

Do I have rosacea? What to look for

Rosacea does come in different shapes and sizes and with different symptoms sometimes, but there are some basic characteristics that might help you to figure out if it could be rosacea you are having. The problem is that they are symptoms that a majority of people with rosacea have, but as I said, not everyone :) But as a rule of thumb, there is a subtype 1 where the skin of the face - especially the cheeks - can go red, get flushed, feel warm/hot, and subtype 2 where the skin can also go red but more with a constant background redness, and acne-like outbreaks on top. For many people with rosacea, being in the sun can be a trigger and make the redness and potential burning worse. A lot of people also notice that drinking (sufficient) alcohol can make their face more red. Spices and emotional stress can do the same. I think that what makes rosacea typical, is that it can make someones skin go red in a matter of seconds or minutes, when triggered. This mostly goes for subtype 1, and is almost like a heavy blushing attack. But the difference between rosacea and blushing is that over time the 'blush' from rosacea takes quite a long time to subside. And these flushes become more frequent. And with time, many people also find that the redness of the skin starts to hurt, or feel hot. Sometimes the face even becomes a bit puffy. As I said, these are no strict criteria and rules, but maybe they can help you in the right direction. A dermatologist should be able to properly diagnose you ideally, because there are more skin conditions that can look like rosacea, including dermatitis, seborrheic dermatitis, acne or the skin redness might be linked to an allergy, or a systematic illness like lupus even. It's up to a dermatologist to make the right diagnosis.

Some more general info on rosacea:

Persistent flushing from any cause can eventually lead to rosacea (but not necessarily). Rosacea can manifest itself with pimples and red skin in the center of the face. Some people get visible blood vessels (telangiectasia), swelling of the skin (edema), and eventually rosacea skin can even thicken, if nothing is done to treat it. I have written a lot about rosacea on this blog and I will just give some common symptoms and characteristics of rosacea here, together with pictures of rosacea skin. It might serve to see differences with other medical conditions mentioned and envisioned here.

Rosacea is usually characterized by redness of the facial skin. Rosacea usually causes persistent redness in the central portion of your face, possibly including the cheeks, chin, nose and even ears and forehead. Some people find that the redness can spread to the neck and chest as well, but this is more rare. Apart from facial redness, small blood vessels might also become visible over time on your skin, as well as swollen red bumps that look a bit like acne, but often without the big pus heads. Many people who have rosacea also develop these types of bumps on their face, which can resemble acne, the so called subtype 2.  
But not everybody does, and people who primarily have a red and flushed face, might never develop these papulas/skin outbreaks. They are said to have subtype 1 rosacea. 

Subtype 1 patients are dealing more with general redness, skin burning and facial flushing (although those in subtype 2 can also encounter all these symptoms). Your skin may feel hot and tender. About half of the people who have rosacea also experience eye dryness, irritation and swollen, reddened eyelids, also called occular rosacea. In some people, rosacea's eye symptoms precede the skin symptoms. In rare cases, rosacea can thicken the skin on the nose, causing the nose to appear bulbous (rhinophyma) and red. This occurs more often in men than in women. It is typically hard to treat, but your dermatologist might be willing t try several medications, including creams (metrogel or Soolantra for instance), or a low dose antibiotic like Oracea (low dose doxycycline). Low dose roaccutane is also helpful sometimes, but you have to be very very careful with the dose; too high a dose and you might develop facial flushing from it. The dose needs to be very low, ideally as low as possible with any effect (think 5 mg every other day for instance). 
Rosacea is often characterized by flare-ups and remissions, especially in the early stages. Initially the redness on the cheeks, nose, chin or forehead may come and go. Over time, the redness tends to become ruddier and more persistent, and visible blood vessels may appear. Left untreated, bumps and pimples can often develop. Although rosacea can affect all segments of the population, individuals with fair skin who tend to flush or blush easily are believed to be at greatest risk. The disease is more frequently diagnosed in women, but more severe symptoms tend to be seen in men -- perhaps because they often delay seeking medical help until the disorder reaches advanced stages (source and source).

Luckily, a lot of people with rosacea can eventually find a treatment that works for their skin, calming things thoroughly down or even going into remission. Granted, the flushing subtype 1 tends to be a bit more difficult to treat, but there are options, including anti flushing medicationanti inflammatory medicationdiet changes, natural supplements or laser/IPL treatmentsI know so many people who used to have subtype 1 rosacea so very bad and who got it almost completely under control eventually. I happen to be unfortunate in that IPL didn't work for me and even made me a lot worse during my first ever treatment. And I'm unfortunate in that my flushing is quite severe and hasn't gone into remission (yet). But I keep on track with the things that do help me and my rosacea is a lot more bearable now than before I saw Professor Chu and started anti flushing medication. 
And for everyone still out in the woods, I would advice to take things one step at a time, and to
make a list of all the treatment options and all the medication and supplements you think you will want to try. And to start testing and find out for yourself what works and what doesn't.

All rosacea cases might look alike, but I think they are often very different. Just the difference between subtype 1 and 2 is already profound. Rosacea seems an umbrella term for skin conditions that all deal with redness and inflammation, but which are otherwise quite diverse. Flushing and burning requires different treatment usually than permanent 'solid' skin redness and bumps and outbreaks. Antibiotic creams and pills often work for subtype 2, and if not there are also Soolantra cream, low dose doxycycline (oracea), topicals like tea tree oil and low dose roaccutane even to help out, but none of these are typically a solution for subtype 1 rosacea, with red hot skin and flushing that comes and goes. Subtype 1 is often much more about blood vessel disorder, or underlying firing up conditions like allergies or auto immune diseases or hormonal or central nervous system things, that make the blood vessels widen even more. Often people with subtype 1 also have thin and sensitive skin that doesn't protect anymore. There is a lot less known about this one, and demodex mites and bacteria are less often playing a role in subtype 1 than in subtype 2. And when people have underlying auto immune diseases, then these can be like a fire under the rosacea. Many people with rosacea seem to actually have a digestive disorder of some sorts, or auto immune diseases, may it be thyroid disease, IBD, asthma, arthritis, erythromelalgia, lupus, allergies or another one. There have been people with full out rosacea skin, who turned out to have a mast cell disorder and a histamine intolerance, or a food allergy all along. Then fixing that problem or cutting out allergens can be enough for the skin to recover. So it is complex.. That's why you need a good doctor or dermatologist to help put the puzzle pieces together and do additional testing. Typically dermatologists want to rule out lupus and carcinoma cancers, which can give a rosacea like skin appearance. But then there are other skin conditions that might look like rosacea, including regular acne, eczema, dermatitis and seborrheic dermatitis. 

Anyway, when you struggle with a red and flushed face, I would personally approach this problem very strategic, which helps you eliminating possible causes and treatment options, and also might help you to feel at least a little bit of control, in a situation where your skin will feel definitely out of control. Control taken away by rosacea and its many flare triggers. When your skin normally was a protective shield and something that was just there, just functioning as normal, it can be devastating when it suddenly stops protecting. Stops functioning as usual. On top, rosacea flares might not always look look you are on fire to the outside world (and sometimes they do), but even pink cheeks can feel to you as if they are on fire. And that is a frightening sensation.  

Some people asked me if I think that subtype 1 rosacea automatically turns into subtype 2, if you let it roam free long enough. I don't think so. Or it didn't happen to me at least. It does seem to happen to some others, if I am to believe the literature on rosacea. But for me, I have had type 1 for 18 years now and I have never developed into stage 2. Sometimes a long period of facial flushing makes my skin break out a bit in small red bumps, but they are the result for me of face swelling and inflammation, not of a bacterial issue with the skin. They go away soon enough again for me , and when I can control my flushing for longer periods at a time, I don't seem to get the break outs either. 
However, I can trigger them by using skin care products that my skin reacts to..
With subtype 1 rosacea, with coming and going redness and flushing and burning, you need to focus I think on getting the flushing under control I think. The longer you can stop the flushing and the longer you can bring the redness back to a more normal skin colour, the more chance the skin and blood vessels have to calm down. I flushed for a year straight in 2005, no exaggeration, and I was convinced that it was the death stabbing for my skin. that I would never be pale again, that my blood vessels would have spread and spread into this vast red network, never to be normalized again. But only a week into my new anti flushing regime, and my skin could look pale and normal again for periods on end.. I don't have big visible veins I must stress, no telangiectasia. 

When you go to your doctor or dermatologist and you want to try a certain medication for your rosacea, then I would advice you to print out medical papers, ideally from Pubmed or so, that states that research found this or that medication to be beneficial for rosacea or for the treatment of hot flashes. On my blogpost on my medication I have already provided links with every medication I take. Doctors might feel unwilling to prescribe these medications for good reasons, but sometimes they also just don't know that there are ways to treat the flushing and burning. This is one of the most debilitating aspects of rosacea, yet there is very little information out there or research done on how to treat this aspect of rosacea. The medications that my London professor uses to treat his rosacea patients are not specifically designed for rosacea. Yet they have a long standing record to treat other conditions, of which we can benefit. Luckily there is research done for each and every one of them for the treatment of hot flashes and sometimes even for the treatment of rosacea. Use that information to show it to your doctor. they don't always know every little corner of the specializations of less well understood conditions like rosacea.
It might also help to print out some patient reviews, especially The Rosacea Forum is a massive database of decades of rosacea patient information and experience. And in case you flare, but not on the day of your appointment, you might want to consider printing out a full flare picture of yourself. So that the doctor sees what your skin can look like on any given moment. It is also important that if you feel pain and burning, that you emphasize this to your doctor. Rosacea is all too often seen as a primarily cosmetic condition. And though it sometimes is just that, often it also gives a lot of neuropathic pain and skin tightness and downright acid like burning. The amount of skin redness can be indicative for the level of nerve pain, but doesn't have to be. I used to just get pink in my early days, yet I would feel like my skin was on fire all the same. It was very difficult back then to explain this to my family and friends. And even to my GP.

What can distinguish rosacea from many other flushing disorders, which are mostly discussed here is:

*Rosacea usually develops in your 20's or 30's, or even during menopause for women (although teenagers and even kids can have rosacea! Mine started at age 19).
*The rosacea redness usually worsens with time 
*The redness can be seen on the cheeks but also the chin and nose (and even forehead and ears for some)
*People with rosacea often have a pale complexion and a tendency to blush 
*In the earlier stages the skin can become red, yet it also can look pale again once a flare is over. Flushing flares can last short or longer. Only with time the redness usually can become more permanent.
*Generally there is a worsening of symptoms after sun exposure, drinking alcohol or eating certain foods. 
*Skin becomes often dry and flaky
*Skin often starts to feel hot or painful (burning) over time
*The flushing isn't accompanied by sweating
*Papulas may appear on the face
*The face can become a bit swollen from the redness, called edema
*When a flush is triggered, it can take a long time to disappear again, typically longer than a few minutes.   

* In a very recent survey, conducted by the NRS nearly 93 percent of 1,709 rosacea patients said they had experienced physical discomfort as a result of the disorder, with burning and stinging the most commonly cited pain sensations. Among the other physical discomforts experienced by the survey participants were tightness, cited by 45 percent; swelling, named by 44 percent; tenderness, mentioned by 41 percent; tingling, 32 percent; prickling, 25 percent; and headache, 19 percent.

Pictures of rosacea patients

David Pascoe wrote a post about potential causes for facial flushing.  

In this post he included a table with potential flushing causes:

Differential diagnosis of flushing
Common Causes

    Benign cutaneous flushing
    Food or beverage
    Climacteric flushing

Uncommon, serious causes

Other causes
    Medullary thyroid carcinoma
    Pancreati cell tumor (VIP tumor)
    Renal cell carcinoma
    Fish ingestion

    Psychiatric or anxiety disorders
    Idiopathic flushing
        Multiple sclerosis
        Trigeminal nerve damage
        Horner syndrome
        Frey syndrome
        Autonomic epilepsy
        Autonomic hyperreflexia
        Orthostatic hypotension
        Streeten syndrome

    Very rare causes
    Sarcoid, mitral stenosis, dumping syndrome, male androgen deficiency, arsenic intoxication,
    POEMS syndrome, basophilic granulocytic leukemia, bronchogenic carcinoma, malignant histiocytoma, malignant neuroblastoma, malignant, ganglioneuroma, peri-aortic surgery,
    Leigh syndrome, Rovsing syndrome

Steps to take for Evaluation Of The Patient With A Flushing Disorder

These are some tips for doctors about diagnosing patients with flushing symptoms.
 He or she needs to first look at clinical characteristics. Are there certain agents that trigger the flushing? This would suggest an underlying systemic disease as the cause for the flushing, such as mastocytosis and carcinoid syndrome.
  • Is there a basic feature that comes and goes?
  • Is the redness patchy or confluent?
  • What is the color of the flush?
  • Is there cyanosis?
  • Is the flushing preceded or followed by paleness?
The morphology of the flushing may suggest not only the cause of the flushing but also, in the case of carcinoids, the anatomic origin of the disorder.
Associated Features. These may include respiratory symptoms, gastrointestinal symptoms, headache, urticaria, facial edema, hypertension, hypotension, palpitations, or sweating.
Temporal Characteristics. Temporal characteristics are the frequency of the flushing and the timing of the specific features during each flushing reaction. Important information can be obtained from a 2-week diary in which the patient records how long and how severe the flushing events were, and lists exposure to all outside agents. When the diagnosis remains obscure after evaluation of the 2-week diary, the patient can be given an exclusion diet, listing foods high in histamine, foods and drugs that affect urinary 5-HIAA tests, and foods and beverages that cause flushing. If the flushing reactions completely disappear, the doctor can start to reintroduce the excluded items individually, one by one, to identify the food item that causes the flushing. If the flushing reactions continue unchanged, then further metabolic workup may be undertaken.

Always make sure when you have rosacea that you maintain a gentle skin care regimen. 
Try to identify your triggers and avoid them. Look together with your dermaologist for treatment options. For instance medicationnatural anti inflammatory treatment optionsdiet or laser/IPL. Treating your rosacea successfully will help you achieve and hopefully maintain remission.

Erythematotelangiectatic rosacea

while considered by many to represent a separate entity, may in fact be difficult to distinguish from normal facial flushing and sun-damaged skin. In attempting this distinction, it may be useful to assess the extent of baseline facial telangiectasia, hypopigmentation and hyperpigmentation. However, since these 3 conditions are all common, they may coexist in many patients.

So, in summary:

Rosacea is said to typically start in people's late twenties, thirties, forties or even onwards. Some doctors insist they don't see it in teenagers or youngsters, but the forums are proof that this is not correct. I developed rosacea virtually out of the blue at age 19. However, the sudden onset can be a clue for rosaceaOther patients had a long standing tendency to blush or get red as a youngster and found that this developed into rosacea with age. A good portion of rosacea patients also seem able to trace the rosacea back in their family history, and know parents or grand parents who had rosacea symptoms. However, this definitely isn't the case for everyone. (Nobody in both my families have rosacea, only eczema issues). The use of Accutane/Roaccutane or (Hydro)cortisone cream can also have been the trigger for rosacea to erupt. When people develop red, burning and flushed skin or bad skin rashes after use of any of these creams, steroid induced rosacea should be the first suspect.
Rosacea tends to wax and wane, and can flare badly, only to calm down again some time later. Flushing also tends to be temporary initially. Some people with rosacea have a lot of baseline redness, but those mainly affected by the flushing can have relatively pale and normal looking skin when not flushing. This is another characteristic of rosacea.

The redness of rosacea is usually not sharply marked from unaffected skin. So the redness usually blends in somewhat, and the flushing can affect only part of the cheeks, usually the inner cheeks closest to the nose. With exception of those with permanent redness (which normally takes time to gradually build up with rosacea), this redness can also subside rather quickly when you cool the face. People with rosacea have typically different parts of the face affected. Redness and
flushing tend to to start on the cheeks for many, although especially males also find their nose and ears affected quickly. The chin can also get red with time, and even the forehead. This is another characteristic of rosacea, although not an entirely exclusive one. (Flushing, burning, swelling and redness of the hands and feet is usually Raynaud's Syndrome, and has to do with unwanted widening of the blood vessels there. It usually occurs in winter and many rosacea patients have Raynaud's on top. I got tested for it in my university linked hospital and tested positive). Rosacea tends to give both facial flushing and redness ├índ small red paps and pimple like eruptions, generally without white heads. Some people mainly get the one, others the other (subtype 1 and 2) but most people with rosacea experience both symptoms at some point, more or less severe. For instance, I have subtype 1, with erythema, burning, redness and flushing and very little outbreaks, but when I flush badly or eat something wrong, I also get red dots that look like little red pimples without a real white head (but often with some fluid or very fluid thin puss inside).

Most flushing reactions result from benign causes. However, since flushing may be the presenting sign or symptom of several life-threatening conditions, it it important to discuss your symptoms with your doctor. If needed, he or she will do more tests to rule out some other diseases. For instance systemic mastocytosis, carcinoid syndrome and other tumors. Read also this link from the Rosacea Org.

Coexisting health problems which people with rosacea often mention

Many people with rosacea face coexisting health problems at some point. Bowel conditions are most mentioned, as well as allergies, thyroid problems and hormone disturbances. One of the problems most rosacea patients will encounter, is that most dermatologists are not very receptive to these coexisting conditions. Many patients have complained about dermatologists who are unwilling to listen to their worries about this, are unwilling to send them to collegues, like an immunologist or neurologist, for further diagnostics and even if patients have a diagnosis of conditions like Raynaud's syndrome or colitis or Crohn's Disease, many doctors will fail to see them as potentially related to the rosacea symptoms. This is very frustrating.

My personal experience with coexisting health conditions

I have seen 3 immunologists and the last one was a professor who did extensive bloodwork to see what auto immune and inflammation makers would come up, and they were very few actually, despite us expecting a lot more. I have been tested on ANA levels and they have been creeping up over the years, from 0:20 to 0:40 to 0:80 now (equals a positive for auto immune activity, but it didn't worry the immunologist one bit). I was sent to all of them by my prof dermatologist, a good one who kept an open view and ackowledged he didn't know enough about it all and tried to cooperate with some other specialists (immunologist, internal health doc and a neurologist) but nobody really worked together in the end and it resulted in some independant tests from all involved, diagnosis Raynaud's, colitis, arthritis onset, slightly raised ANA markers, some pro-inflammatory T-cells etc, - all half vague, slightly out of whack stuff but nothing alarming enough - and that was it; no plan of action, no further cooperation and no treatment, apart from the anti flushing medication I already took.

I think this is too vague for most scientific based specialists and demands too much speculation from them to even want to dive into the cosharing of diagnostics with other specialists. I doubt many will come up with alarming coexisting health issues, apart from some people with clear cut thyroid problems amongst other things. I think often people with rosacea here complaint about other halth problems, like bowel  issues and allergies and inflammation issues, but not many doctors are paying much attention to that. That makes me pretty disappointed and demoralized. I wished just more doctors were willing to step up and really aspire to get a better overall picture of all the other little things going wrong inside us, which seems to eventually result in the rosacea, among other symptoms.

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..

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

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.

Really red and sore by now

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).

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