blueskies

Thankyou, thankful -- yeah I have been stressed and I can't remember if I said this allready but he is a 'horrible patient.' I haven't forgotten about writing a time line for you and will do it as soon as I possibly can. I did mention to my allergist/immunologist yesterday afternoon that I have FINALLY found a couple of people on a POTS forum that seem to have many of the same problems I have when it comes to skin. She was really happy for me as she said skin/alllergy/intolerance wise I was one of those rare people, unfortunately, that they have trouble helping. My allergist dismissed my gp's diagnosis of rosacea (the 'pustules' were actually just dying skins shedding or skin starting to die, they had a creamy colour in the middle of the redness but they weren't really pustules, after all that -- he should have seen that). She said I have some sort of rash, gave it a general name but could not pinpoint it exactly. She said it wasn't fungal though. She did say the cream my gp prescribed would only have dried it out more because it contains alcholol. She's given me a stronger cortisone cream to use (stronger than you can by over the counter in Australia) and told me to send her an email if it doesn't work. We are also trying singulair to help with allergies and all my food/chemical intolerances. I have had to follow a very bland diet for the past 8 years as I react to salicylates, amines, msg, additives etc in food (I've probably already mentioned all this) and any deviation will cause skin to redden and burn. It's called The RPA Elimination diet. Developed by one of our biggest hospitals for my sort of problem. Most people are able to eliminate certain foods and then after a while slowly add them back into their diet as they become less sensitised to stuff like salicylate containing foods etc, until they are back to an ordinary diet. Instead, I have become more sensitive over the years and the food I can eat is really limited. not quantities but variety. And because I can eat dairy I go for lots of butter and creamy stuff which has caused me to gain lots of weight too. Anyway, we spoke for an hour and we talked about me trying some of the meds that I'd tried some years ago with her but was unable to tolerate side effects. So, long story shorter, I am trying singulair again. I know you take it and when she mentioned it I said I'd try that one first. (If it doesn't work out we can go back to trying others). The hope is that the singulair will allow me to eat a more balanced diet without skin reactions. I woke this morning with a worse than usual painful migraine after taking one singulair tablelt last night. I thought, oh crap. But the past few days I've accidently been leaving too long between my doses of migraine meds because I've been sleeping through the times I should be taking them. So I'm hoping I've just created the situation that I'm not in a steady state with my migraine meds and it's not the singulair. She's not going away after all and wants me to keep in touch with her as she is hopeful that we can solve this stuff -- or at least part of it and after 8 years she can see I'm really pissed off about it all. When I said to her that I comfort myself about not being able to eat a normal diet or eat in a restaurant or anything by thinking of people who can't eat at all and are tube fed she said, no, not to think like that. That I've really had to put up with a lot with this particular problem and it would be crazy if I wasn't feeling frustrated etc. It's so nice to be understood and get a bit of sympathy. LOL. Okay, I've gone on long enough and it's hurting my head to stare at the computer screen. blue

It's better for me if I can stay upright and moving for migraine -- which can be hard to do with pots.. It used to be that staying in bed, darkened room etc, helped but I find lying down will often bring on a migraine. In fact, I wake up from a night's sleep with most of my worst migraines. I've got a really crappy migraine this morning even though I take (usually) pretty effective medication for it. I was started on Singulair last night for rash and allergies and food intolerances so I'm hoping that this is not the Singulair. It's hurting to look at the comp. screen but staying upright -- i have a desk-top so I have to be upright-- might counteract that and decrease pain. Sometimes though, my migraine can get so bad I have to retreat to my bed in a darkened room and I dread having to do this as mostly it can make the really bad pain level last a longer time than if I was moving around as much as possible. blue

After my grandchildren have visited I get to pick up all the toys I keep here for them to play with. I couldn't bend and stand or I'd feel pretty bad. I get down on the floor and either crawl or sit on my bum and scoot around to pick them up and put them back in their baskets and containers. Someone mentioned a choking feeling when they bend. I can get that at times too. Also I can grey out when I do it. I've been known to drop change on the ground when I'm out and left it there at times because it was one of those days that I knew if I bent over and then straightened I wouldn't feel too well afterwards. blue

[quote name='Mack's Mom' let us know what you find out from the allergist. I, too have had lots of anaphylactoid reactions to unknown triggers- scary. Sorry you are dealing with so much. Julie I had a bit of lucky yesterday afternoon. I rang my allergist/immunologist's secretary to ask her if there was another doc I could see why my doc was away. Turns out my doc hasn't started her holidays yet and I was offered an appointment for today at 5pm. Someone else had cancelled. So hopefully I'll know more by this evening. Whether it is rosacea or something else. I just am not sure why my gp dismissed a form of erythema out of hand. I've got erythema -- was diagnosed with it about 7 years ago. It's a lot of bog red blotches and large areas of my skin are involved and bright red. although not raised. redness but often with some accompanying edema. But it tends to burn and is very sensitive. Sometimes i have the burning without the redness too. But this facial stuff is different that that. It was burning but that stopped. Thank the gods. It's raised and has white flakey skin peeling away from it. When I lifted a tiny bit of the white flakey skin off -- I didn't need to peel it, I just put my finger on it and it came away on my finger it was red underneath like the skin that surrounds the flakey stuff. About 5 minutes afer I lifted that bit of flakiness off the underneath skin became quite sore for a while. It settled pretty quickly. I think the white flakey stuff is dead skin. Can't think what else it would be. A few months ago I had a recurring rash on my face (Not like this one but some similarities but it really was 'just a rash' looking thing and I didn't think 'yuk' when I looked at it) -- and was using hydrozole to clear it up. Hubby got sick with a bad back about 8 -9 weeks ago and I was nursing him for about 7 weeks. He had an op and came out the next day - he should have stayed in a few days as is the norm and I really needed the break but I didn't get it). I was potsy, sleeping on the lounge the whole time because he couldn't share our bed and I was in lots of muscle joint pain from doing so. He uses hydrozole for a skin thingy too (On his bum -- there, he deserves me to say where it is) and I realized when the skin rash came back during this time I was nursing him he was using my tube of hydrozole as well as his. I was not about to use a tube of something he'd been putting on his arse. That's for sure. And I was so dog tired, mentally and physically, and had all my pots crap going on I kept forgetting to pick up another tube of hydrozole from the pharmacist. Can't help wondering if I'd remembered to buy another tube and kept on using it if my skin would not have broken out like this? Whatever -- all I know is that I've been under excess stress lately with him being immobile and wonder if this has contributed to my facial rash thingy. What is also freaking me out is that I can't really remember time frames of what happened when. It's like my brain fog has got so bad I've got amnesia about lots of things. I just can't remember things happening that did happen or if I know something happened I find it hard to recall when it happened. This has been going on for a while but I've been ignoring it however the past couple of months nursing my husband has made that problem so much worse I've made reference a few times to my brain fog on this forum. Stressing out, dealing day by day with his illness while trying to deal with pots while he seemed to think I had some sort of magical button I could hit to turn the pots off or something. I was so stressed and still am. This sort of stuff doesn't go away. But I can deal with it physically better than I can deal with it mentally. I really hate not being able to remember stuff or when stuff happened. I won't even be able to tell my allergist/immunologist when all this crap started exactly. I just can't remember properly. And am not sure where to begin. I think my best approach is just show her my face and let her ask me questions and if I can answer them I will. If I can't I'll blame the exhaustion and brain fog. Also, as to MRSA, 3 weeks ago today I spent 7 hours sitting by husband's bedside in the hospital while he was waiting to go down to surgery. I have given some thought to my skin maybe becoming infected there -- if it is an infection. Especially as I could have had a slight amount of the rash at the time and not registered it.- the earlier one I spoke about above that wasn't obvious to me that day -- my mind was on ohter things. I was just not noticing things that were happening to me. I just felt very lucky while he was sick that I could manage to get out and buy his daily food, get his prescriptons from his doctor and have them filled and then get up the two flights to my apartment. Also I had to get him to doctors appointments. It took many weeks before his dopey gp decided she didn't know what was happening in his back and sent us on to a spine specialist. No wonder I'm brain foggy and run down. I wasn't looking after myself at all during this time. He's been back at work since mid last week but has been so rude to me all this time -- guess his back is still hurting a little bit. But going by his visits to the pub etc. I shouldn't think it's hurting too much. However, after he finally took the time to put his glasses on and have a proper look at my face yesterday afternoon he became quite alarmed. When I told him later that I'd struck it lucky and got today's appointment he said he was really relieved. My face looks bad and it's freaking him out now he's taken the time to look. Usually he just tries to ignore that I'm sick. POTS is so often invisable. So it's easy for others to ignore a lot of the time as most of you would know. I'm feeling a bit bitter at the moment. Oh, ****, I was trying so hard to keep all this inside but I've vented.

Hi Julie and thanks, I truly agree with most of your post actually. I'm going to have skin punch biopsy done when my allergist/immulogist gets back in August. Plus that blood test. And the Roxec IS metrogel. Doc did not suggest oral anti-biotics and I was relieved. Over the past 8 years in which this POTS stuff has really got out of hand I've tried oral anti-biotics 3 times and reacted to them with intense burning and flushing. Not sure what is going on there as antibiotics come in all forms. I reacted to amoxyllin, Keflex and one I can't remember the name of but it only took one pill to start the burning with that one. So, oral anti-b's would be out for me. I think. I'm too nervous to take any sort orally in case it sets off more burning feeling. I do know that if I took the prednisone I have for any allergic reactions I may have, that my face would very likely clear up in a couple of days but only for a few hours a day (the anti-inflammation properties don't seem to last terribly long) And that stuff just messes too much with the body and too much with my emotions. Makes me feel mostly down, moody, and I want to cry a lot while on it while feeling slightly 'out of control' of myself. H1 and H2 receptors do help I think, but they make an already bad constipation total. So I had to stop them. My allergist did try me on singulair a few years ago but I had a reaction to it. But I think it might have been a 'head' reaction. Meaning I'm very phobic about new meds as I've grown allergic to so many .I didn't have one single allergy 9 years ago but an anaphylactic reaction suddenly to aspirin scared the **** out of me and I've had anaphylactoid reactions to other things and less dramatic allergic reactions to still other things ) ....well, thinking that there was probably something else I could try I didn't persist with the singulair. i will revisit the idea of taking this drug when I talk to her at my appointment in August. If I can last that long. May go see a dermatologist meanwhile in case he has some imput. My mother just popped in and had a look at my skin and told me that my skin does not look like my sister's who has rosacea. I've never seen my sister's skin when it's inflammed. Written a couple of hours later: Okay, actually I just saw the sister with the rosa cea and she told me that hers looks nothing like mine - she hasn't got an 'outbreak' at the moment so I could not compare. She sald definately seek a specialist's opinion quickly. It does look gross. So far my mother and 2 sisters have seen it and they think it looks pretty bad. I've been out of the house a couple of times in the past 2 days and people I don't know have stared when they got up close enough.

Hi, I was walking my dog -- actually son's dog which I'd 'inherited' for 4 hours a day. Most days 2 hours in the morning and two in the afternoon and walked 'very fast.'. I was very fit. So was the dog. But one day while out walking I studdenly couldn't walk another step and felt like I wasn't going to fall over. This happened about 8 years ago now. Before I knew it, I was on my butt on the ground wanting to lie down -- brain fogged, sick etc.. (I had experienced this a couple of times before but after a week I was back on my feet each time). This time, though, I was unable to do any further exercise apart from keep house and sometimes cook (standing still preparing meals in the kitchen will do me in). This lasted for 4 years and I went from being extremely fit to very deconditioned. So it wasn't the deconditioning that 'started' the OI of POTS. It was the POTS (undiagnosed for another 4 years). I'd always had some problem with walking at times. And a LOT of problems when out when I'd been walking and had to stop moving and wait at crossings for the green light. That's when the OI would really set in. This past 2 years I've been doing mat pilates mostly. But I went through a period late last year where I didn't exercise for 7 weeks. And am now in a period of not exercising again. Only this time it has lasted 3 months. I'm 54 and 'no exercise' really shows on me. But I just don't feel well enough. I could start swimming again (I've found swimming to be the easiest exercise for me if I can get to beach) but winter has started in Australia and although the water temps are still fine for swimming at the moment the air temp is too cold. I can't warm up when I get out of the water and it's very painful for about 4 hours after. Shivering and shaking etc. trying to exercise wihth pots is a mind-field I find. I was thinking about trying to get a second hand rowing machine. Has anyone had any success with one? It's a 'sitting down' thing that maybe I could do. Like mat pilates is a sit down or lie down set of exercises.

Hi thankful, As you know I wrote you a long reply but 'lost' it despite somehow 'posting' it twice???? Anyway my post to you about all the burning skin stuff was really long and all over the place so tomorrow (if my brain is clear enough) I'm going to sit down and try to write a time-line for you about the skin flushing and burning -- much like you did in your post. It starts about 8 years ago. So I have to get my thoughts in order. I do want to exchange this info with you because we seem to have so many similarities -- even down to having problems with what clothes we wear. IE. that is if they are soft enough so as not to irritate the skin or lose enough. I'll get on it as soon as my brain starts to function again. I've been reading a novel a bit lately and although I seem to forget a lot of what I've read at least I am getting back the concentration to actually read more than a paragraph and understand it. I think things in the brain fog department are starting to improve again for a while. blue

Hi Julie, I saw my general practioner yesterday and he 'thinks' it's rosacea. And gave me something called Rozex gel. An anti-fungal and anti-biotic gel my pharmacist told me. I think. I've applied it twice and I know it's too early to see any positive results but this thing has spread since I saw the doc yesterday. It's now on my chin, all around my mouth, on one cheek and on my nose and a few bits on my forehead. I"ll give it until Friday to see if it's going to settle a bit before I start searching for answers from other docs. My allergist/immunologist is away until early August which is a bummer. Actually, there are a few gps who practice with 'my gp' and early yesterday when I rang to get an appointment I said that it did not have to be the doctor I usually see, but he had a cancellation wouldn't you know, which worked against me because I want to change to another doctor in the same practice -- I think my gp is 'lost' when it comes to POTS and I think he doesn't really believe it, to tell the truth. What with a 'mental illness' also on my record -- that doesn't help. Anyway, although my face looks like I've got leprosy or something at least the burning stuff has gone away -- this time since Saturday. Knock on wood the burming stuff stays away. My sister has rosacea and I've never seen her face look like as bad as mine does today. I need a veil if I want to go out and not feel like everyone is looking at my face and going 'yuck.' The pustules are pretty gross looking. blue

Hi Simmy, You were obviously having such a bad time of it. I have found that squatting will keep my heart rate down too, but when I stand it picks up speed and makes me week and dizzy etc. This has been squatting then standing phenomenon has been happening to me for at least 25 years. It took me a while to work out not to do it as no doc could explain it at the time. I try not to squat anymore - rather sit on my backside and then get up really slowly. Which is very annoying if in a library or bookstore or supermarket etc. I mean who wants to sit on the floor in a supermarket? I just never look at the items on the bottom shelves if I can help it. For me, standing from a squat will always make me feel dreadful. I hope you get the financial benefits you obviously need. I'm in Australia -- where as long as I'm living with my husband I'm entitled to no benefits. I have to ask him for any money I need. And the benefits available to me should I leave him are way below the poverty line. Way, way below. I understand it's different in the U.S. for some. blue.

I truly get this 'want to be in denial' thing. I'm going through a more symptomatic period at the moment. Last night my hubby came into our room to tell me that my son had rung to ask us to visit him and his wife and our grandkids on the central coast for the weekend. (Last night was Friday night in Australia). It's about a two hour drive to their place and I'm lying in bed and I said 'sounds great.' And I was sort of convinced I could go. I woke up this morning to the reality that there was no way I could go and stay overnight. I need to be at home today dealing with how I feel. So I sent hubby off for the weekend to visit them and I get a break from having to do anything for anyone other than myself until tomorrow afternoon. At the same time I would have loved to see my son and grandsons. Sometimes I do feel if I just ignored the whole bloody thing it would be better and I've tried. Like a 'theory' I'll try out. But I've felt sort of ridiculous when I've tried to. I can't usually walk more than a couple of blocks for heaven's sake. And I'm sharply reminded of my present limitations. I did it yesterday. I went to the city with my mother and we did some shopping. I stayed on my feet longer than I have for ages. (Which isn't very long for the 'average' person). But today I feel like **** so reality does bite. blue

Hi Thankful, I seem to have a lot in common with both your mum and yourself when it comes to the burning sensations. At the moment my feet are burning quite a bit -- up to my knees. My face is also burning as are my upper arms and a bit across the back of my shoulder area. This is actually a 'good day' when it comes to the burning sensations. I haven't got the feeling like I'm burning up on the inside all over for example. Also, skin sensitivity often acompanies this burning sensation. I find it very hard to find clothes to put on that are soft enough to not hurt my skin. Pain doc says it's because of having so much head pain I'm now overly sensitive to pain but POTS doc says it's something to do with autonomic dysfunction. Either way, I'm stuck with just having to deal with it and wait for it to go away. Cool showers (not cold ones) sometimes help. Moderate temps. can help too. And a few times in the last couple of days I've stripped down to my underwear and stood barefoot on the kitchen tiles in front of an open window == and we've had some quite cold days for this time of year. Although Sydney weather is hardly what you'd call 'extreme' at any time. No such thing as snow in Sydney for example. When it gets real bad I try my allergist/immunologists plan for it and for anaphylactoid or other allergic reactions I also have to deal with. I take prednisone, zantac and zyrtec. Sometimes this regime seems to work to an extent when it comes to the redness and burning. Sometimes it doesn't. Prednisone WILL always help with my chin rash and 'pimples.' A type of erythema. But I've got to thinking for the burning it may just calm down at times on prednisone coincidently -- because it doesn't work all the time. I'm wondering how you and your mum handle these sensations. What you and she take for it, if anything. Emotionally they take a lot out of me. I can feel like I'm really losing it when it's at it's worse. Tears and everything. And tears only seem to make it worse sometimes. Certainly makes the flushing worse. Weirdest thing to me is that I was never a person who flushed -- until about 8 years ago. My daughter is. She flushes when embarrased for example. I"ve just never done that when I've been embarrased. blue

Hi Erika, I wish you well for your proceedure and let us know how you go. I'm a chronic migraineur. The only consolation I can take from it is the word 'migraineur.' It sound so french. The rest of it *****. I really hope your proceedure is a great success. Fingers crossed. blue

Thankyou, Thankful, I feel for your mum. And you. The flushing is a right royal pain, that's for sure. Thanks for mentioning the Chromogranin A (CgA) test. I came across that info the other day on a site for carcinoid syndrome but that was the first time I'd ever heard about it. Your imput was the second. I intend to have the blood test done. My sister has rosacea. I haven't seen her face when it's active. Apparently going from heat to cold really messes with her face and causes her to go bright red and her nose becomes slightly swollen temporarily. She finds winters hard because we are forever walking out of heated areas (homes, shops etc, into the cold). I'm in Australia and our winter starts officially in a few days time. I welcome winter. She does not. She's off this winter to spend 3 months in Bali in the heat. I think one of her reasons for choosing Bali for her and her family to go to was she does better in warm climates with her rosacea whereas my flushing feels much worse in the heat. I used to love summer but now am just so glad when each summer ends. It's a shame. Wouldn't it be lovely to be able to appreciate every season? blue

Thanks Noreen, My POTS doc recommended him and he was the first doc other than my pots doc who could talk knowledgeably about POTS. It was like winning the lottery when I had my appointment with him . I will let you know how I make out. Not looking forward to the ultrasound endoscopy. Any form of anaesthesia really messes with me. But that's a common thing for a lot of people with dys. Yep, my brain has gone AWOL, for sure. I just try not to stress about it. And wait for it to come back. If I remember just to try to go forward one step at a time when I'm able I'm not the emotional mess I can become when I try to fight it. I remember reading a paper by Grubb and was very gratified to see how much he understood about the effect having POTS (and I'd include all forms of dys but he was writing specifically about POTS) has on all areas of our lives. Our sense of self, our emotions, our finances etc, etc, etc. blue.

Hi, I see a shrink because I have mental illness. HOWEVER, if you feel no need to see a shrink I agree with you. Why should you? I"m in Australia and once a mental diagnosis is written onto your record many doctors will find a way to put every symptom into the 'all in your head category.' It was hard for me to battle at first. I made no headway and my symptoms of dys were dismissed for way too many years before my symptoms increased in number and grew so severe that doctors could no longer deny I had a physical problem. Ironically, it was a psych I was seeing a few years ago that knew I 'had something else wrong with me. other than my mental illness.' However, I've come a long way and am no longer ashamed of my mental illness and, indeed am very lucid about it. Not to say that at times it can be very hard to manage but I get there. If a doc refers to it when I am there to see him/her about another problem with dys, I will nod and say yes, there is that component that may be partially relavent to the health situation we are talking about BUT it is not the whole story. Let's get on with it. That pretty much puts them in their place. Latest statistics in Australia has shocked Australian people (and politicians too) -- 15 percent of Australians have some sort of mental illness. My guess would be it would be the same in the U.S. and other western countries, if not world-wide. Those statistics also inform me that there is a good chance that there may be 15 percent of doctors with some sort of mental illness. Not long after I was diagnosed with POTS I began to question that specialist's diagnosis even though he is a very well respected diagnostician amongst his medical peers. I remember ringing my psych -- a new one as my old one had moved to another area and it was too far for me to travel to see him -- when I started to wonder if somehow I'd managed to dream up an illness in my head that I'd never even heard of - I didn't even know there was an 'autonomic nervous system' in our bodies let alone that it could become dysfunctional. (I knew about the CNS, of course. It comes into play with a lot of psychiatric stuff). Anway, when I rang my psych I asked him did he think that perhaps I really didn't have pots but instead had some sort of somatoform disorder (the most well-known and misunderstood is what lay-people call hypochondria). He asked me to give him a few days to think about it and he'd ring me back. Which he did. He said, "No you don't have a somatoform disorder, you have POTS." BTW, I feel great empathy for hypochondriacs because they suffer their own sort of ****, too. However, I've gotten off the point in my answer to you. Don't go seeing a shrink if you believe there is no need. I equate doing that with, say, going to a podiatrist when there is nothing wrong with your feet or a dermatologist when their is nothing wrong with your skin. If your head is fine why see a shrink? Having said that, I do think some emotional support from shrinks can be valuable for people who get little or no support from other people around them ie family and friends. I see my shrink for that reason and because I have a mental illness. I have a reputation for writing long winded emails. Sorry, it's brain fog. My 'edit button' doesn't function. Can't even find it at the moment. hugs to you and follow your instincts. blue.

Hi Angelika, I am 'allergic' to the sun now too. It won't cause me to have a visible allergic reaction but I just can't bear the heat of sun on my skin anymore. Which is weird because a few years ago I was swimming daily and actually got a light tan while doing so. (Although I'd get straight in the sea and straight out and under cover once I'd finished). Now I carry an umbrella with me all summer and use it and it really helps -- I can even keep the sun off my hands that way and don't have to use sunscreens which can be problematic for me. Unfortunately, my response to the sun has stopped me swimming. And I can't swim in a pool at all because I AM visibly allergic to chlorine now. Plus they are heated and after 3 laps I feel like I'm swimming in a too hot bath. (I need to have cool showers and am very temperature sensitive. perhaps that's my problem with the sun - that it just makes me hotter and anything that makes me hotter feels intolerable. blue.

Thanks Reen and Julie, After reading your posts I did a bit of research and found a picture on an erythema site of someone's big toe who suffered ereythema nodusum. The markings on the toe looked just like my chin when it breaks out. My allergist/immunologist is away at the moment so I'm taking the H1 and H2 receptors and a 15mg dose of prednisone she recommends when this whole erythema thing gets too uncomfortable. My whole body has been burning this past week (I feel like I'm burning up on the inside and like I'm burning in different places on my skin as well) but in the past few days, with the medication, things are calming down. It's interesting to note though, that when the medication (especially the prednisone) starts to run out of effect as the day wears on that the redness comes back --just not as bad and I think it has to do with the H1 (Zyrtec) and H2 (ranitidine) I take twice a day being helpful. Until she gets back from holidays (the earliest appointment I could get was August) I'm hoping to continue on the Zyrtec and ranitidine. (hoping to drop off the prednisone in a few days time). I've long felt that I possibly have carcinoid syndrome (I have a peanut sized growth in the submucosal walls of my stomach) and friday week my new gi will be doing an ultrasound endoscopy and taking a biopsy (he can't understand why when it was found it was not biopsied by my old gi). this new gi knows about pots too, which is ultra helpful. The only symptom I don't get of carcinoid syndrome is diarrhea. I have the opposite problem and it was taking magnesium sulfate to empty my bowels which bought on this latest outbreak of burning and redness (but I flush at a less painful level most of the time and they are mostly dry flushes which indicate carcinoid syndrome). I think it's a remote possiblility that I have it but my new gi is taking this very seriously. I think my old gi dismissed carcinoid syndrome because I didn't have the classic diarrhea but with pots why would I? Anything is possible. Otherwise I'm thinking, as the problem is getting worse and not better I might have an underlying mast cell disorder. I did the 24 hour urine test some years ago and was assured I did not but recently just found out on the mastocytosis society website that 73 percent of people with mast cell disorder are diagnosed this way. Other's who have it fly under that radar and diagnosis can be missed with this test. Apparently. I have never been told this but I figure the mastocytosis society would have this right. Hopefully I haven't messed up any of the information I've read up on. My brain fog is really bad these days -- I put it down to too much stress and distress -- and often don't trust myself to not misunderstand the stuff I may research. At any rate, I'm not sure what's worse. The burning, red skin on parts of my body esp. my chin or the feeling like I'm burning up from inside all over my body. It's part of the reason I feel such distress. I've raved on, sorry. I'd edit some of what i've written as I've put in too much info but I'm brain fogged at the moment and not sure if I could make sense if I tried to edit. Hope I've made sense this time. Many thanks, blue

Thanks Simmy, Yes, I wish they'd hurry up and find that planet too. blue.

Hi Ramakentish, Your explanation totally makes sense to me. I have daily migraine which is controlled -- for the most part of the day -- by low dose opiates. No doctor has ever told me my black spots have anything to do with my migraines. I get other types of auras so it makes sense to me that the black spots can be an aura too. Many thanks, blue

Hi Nina, I usually post over on another forum but I came here to ask a question and read your post. I'm so sorry to hear that your relationship has broken up. My heart goes out to you. And yes, emotional issues are hard on this dys stuff. Though I never could work out how anyone could not be emotional having to deal with this stuff. But a relationship breakup is a 'biggy' and I'm just sad for you. Your post touched my heart. many, many hugs, blue

Hi all, I get occurences of erythema. Sometimes I can trace it back to what has caused it and sometimes I think it's just something my body does for the heck of it every now and then. My skin will burn in places all over my body. But over the past 6 months or so it is worse on my chin. The red spots there become raised as well as burns like ****. I may or may not take a short course of prednisone and antihistamines for it depending on the severity of the burning. The thing that worries me is that I've now noticed that after the raised red blotches - and sometimes i have a 'pimple' - clear up I'm getting a purplish/blue chin. And I've got a feeling this may be becomming more permanent. I've got a much bigger mirror and better lighting in the bathroom of the new apartment I've just moved to a few months ago and have been noticed that my chin looks bruised and purple when I take the time and remember to look (I'm not a great one for looking in mirrors -- just don't do it very often). Actually I'm wondering if this has become permanent because before it went red this time every time I looked in the mirror it looked purplish. I know erythema is not really a 'pots thing' but it all my symptoms went really haywire around the same time about 7 years ago -- before that it was 'all in my head' until I manifested all sorts of symptoms that docs could not deny- my increase in types of symptoms and severity of the symptoms I'd previously displayed became undeniable. I'd appreciate any help or knowledge anyone has on this particular thing. Many thanks, blue

Hi, I used to have low blood pressure but now it swings all over the place. I was told by my POTS doc that is is often the case for people with pots.

Hi mvdula, You are the first person I've met who finds walking around helps migraine. I get chronic daily migraine and am on meds for it. But sometimes I get breakthrough pain and the best thing I can do is try to keep moving. I do find that I have to get up and move quite regularly as it helps relieve my migraine. Sleep can be torture for me. Most of my worst migraines start while I'm asleep. I have noted that when I stop walking (have to wait for a light to cross the road, say or standing in line) I come over all potsy and feel like I'm going to fall down. My pots doc told me the 'standing still after walking' thing is a fairly common symptom of POTS. I wouldn't mind it so much but it annoys me that because of POTS I can not walk very far anymore and somedays it's really hard to stay on my feet to stave off a more viscious migraine.

I get the black spots -- mostly I notice them when I'm swimming but I can see them now while I'm typing this. I think I'm just so used to them I don't 'register' them a lot of the time. I also am light sensitive (I have daily migraine) and wear sunglasses nearly all the time -- when outside and in brightly lit, especially flouro lit, rooms. Dakota, not sure if I have the same thing as your daughter but many patterned floor coverings can make me feel sick --- like travel sickness and I can't bear to look at them. It depends on how symptomatic I am that day. I have some trouble driving occasionally but this is due to brain fog ( I haven't driven in a while) although I can have problems being a passenger often. I cannot read when in a car or bus or train. I'm certain to get more 'potsy' then. blue

Hi Mkoven, My allergist/immunologist (I'm plagued with hives) is the doctor that recommended I go see the specialist who finally diagnosed me with POTS. I've also had anapylactic reactions, anaphylactoid reactions, and also have red burning skin skin sensations which make my skin very sensitive to clothing, touch etc. It can hurt, at times and I get miserable. I also have three very small hives on between my right eye and temple. At times they grow into definate hive appearance and most other times they are just three really small bumps -- I can hardly feel them. With the worst hive reactions I need to take a course of prednisone and zyrtec (H1) as well as ranitidine (H2). Periactin (an older generation antihistmine) was very helpful and I used to take it daily (it used to also help my migraines) but it stopped helping my migraines and wreaks havoc on my already chronically constipated state.