blueskies

Hi Batik and Julie, Hope and all, Julie, I'm going to try covering one ear to see what happens. I can't often can't 'hear' what is being said to me by one person when there are others talking in the room. It drives my family nuts that they have to repeat themselves. Yet, acute sensitivity to noise -- just someone talking or tv on low -- when I have a severe migraine is torture. A lot of noise, or just a few noisy people in a room will sometimes trigger a severe migraine as does a lot of movement around me, especially that I see in my periphery vision. If I'm in a busy café I can't hear anyone talking at my table and so end up not participating in the conversation. Yet there is nothing wrong with my hearing. My oldest son, having damaged his ears playing loud guitar in his younger years, is now very hard of hearing and when he talks to me he talks very loudly as hearing impaired people often, do and I find that I'm wincing a lot of the time. I've told him he needs to go to a speech therapist to learn to lower his voice but seems he'd rather subject us all to his shouting. My hubby is hard of hearing and 'mishears' me all the time and accuses me of 'mumbling and whispering.' Needless to say I talk to him as little as I can now because my pots does not allow me to shout to be heard -- I can't shout or sing anymore. Shouting will bring on pots symptoms and I just don't seem to have enough breath to sing. I get balance disorders -- sense of vertigo -- with some of my migraines. This is becoming more common. Like Hope, I have to wind down my window to drive no matter what the weather in order to be able to concentrate on the road. I felt it was 'just me' until Hope mentioned her need to drive with window down. blue

like Song Canary's husband I find showering before bed helpful when I have the itchy skin, eyes, general hay-fever like allergy symptoms. I am aware that I have a problem with chlorine (can't swim in chlorinated pools because it will cause hives/rash) but seem to be able to handle showering in our chlorinated water -- I do use sorbolene cream instead of soap, especially in winter (Australia is in winter now), as soap dries out my skin making it itchy. I only use soap on my bum, and underarms for hygienic reasons but not sure if that is really necessary. Often, washing my hair will help more, but in winter it means I'll have to blow dry it before getting into bed and I find it difficult at night to hold my arms up to do so. I use the shower thing for migraines too and it often helps. Allergies and migraines are connected apparently but then migraines seem to be connected to just about everything. blue.

Everything I've read regarding migraines is that if migraine symptoms change the person should seek medical help. A 6 day headache when one has never experienced such a thing before would seem to me to be a good reason to visit your doctor -- I think you are wise to ring your cardio. blue.

I can't eat without drinking. I feel like the food is sticking in my throat -- it's sort of like I'm washing the food down. I chew my food, swallow and then sip water immediately after each mouthful. Not sure why I do this. I started doing it years ago -- at least 15 or so. I can eat foods like yoghurt without drinking because it just slides down. Sometimes I will experience moments when I can't even swallow my spit. I'll have to have a few tries before I manage it. It's a shame your neurologist did not remember to return to this concern of yours at the appointment. Perhaps talking to him about it again might be worthwhile. blue

I damaged my neck when I was 20. Over the years the pain has resolved and then asserted itself again. It's cyclical and I'm now 57 I have to be careful how I lie in bed -- that my neck is fully supported while piling my head high on pillows (sleeping semi-sitting helps with my migraine pain but I have to make sure that there is not the slightest strain on my neck or it will trigger migraine, too). I've tried acupuncture when my kneck has been very sore and found, after about 6 visits that the pain was gone. So it gets a tick for that. I've tried acupuncture for my migraine but ended up with a severe migraine. The practictioner (also a gp but one who is trained to do acupuncture) stuck one needle in the top of my head (pretty much the crown) and it hurt quite a lot. After I left the pain got worse and by that night I had a severe level migraine. So, no tick for migraines. I do intend to try acupuncture for my gi problems -- severe constipation and bad bloating. I think it's worth giving it a try but I need to find a gp who does acupuncture. I would not go to any old accupunturist -- for me I want them to have a medical degree. blue

The problem with cigarettes is that it might not be just a few years of your life you give up if you smoke. It can mean a horrible lingering death. I'd think it would be rare for a smoker to feel really healthy and then just drop down dead a few years short of what would have been their proper lifespan. I used to smoke 13 years ago. I gave up. I then started to get more frequent migraines and had a neurologist who specialized in migraines trying to treat me. I saw him for a year and he had me on a number of horrible drugs - one after the other -- designed to prevent migraines. I've taken every preventative available apparently with only one good result which lasted for 3 months. At one appointment I mentioned to him that I had expected that when I gave up smoking that my migraines would get better but they got more frequent. He told me he had heard this from other patients too.I A couple of years ago, thinking of this neurologist's observation (and feeling very depressed and in the ***!!! state of mind) I started smoking again - a few cigarettes here and there - and for a while I felt a bit more active and it did help my migraines a bit. But eventually it all turned really nasty and I found that smoking was beginning to trigger migraines , raising anxiety levels, and that after an original increase in energy (but nothing really very significant) that I could exercise even less than I could before I started again. Then the coughing started, bringing up phlegm, realising (even though my sense of smell is often absent -- I suspect that symptom is a pots thing) that I stunk, that my house stunk and my grandkids - who accept that their grandfather smokes (although NEVER around them) and doesn't mind him smelling of stale cigarettes -- really hated that I smelled like that. So I stopped again. Although I sympathise with those who smoke because it's 13 years now since I really stopped -- if I don't count my pretty short lapse -- and I still get a craving now and then even though I know how it's gonna make me feel terrible if I have a cigarette. But I know cravings only last 3 minutes and then they pass. I live in Australia and our present govt passed legislation that all cigarettes come in an olive green pack with scarey warnings and the grossest pictures of sick people dying of cancer on them, pictures of premmie babies, feet that have been amputated etc., because of poisonous effects of nicotine and other chemicals contained in cigarettes. It's a testament to the powerful addictive properties of cigarettes that anyone would willingly buy a packet that looked like they do and smoke the contents. blue

I didn't drink coffee for 20 years because I was told it would be making my anxiety attacks worse and it would be wise to stop. A few years ago a gp suggested I drink 2-3 cups of good quality ground organic coffee a day. I do. And that has no effect on my tachy. I guess for me that's an acceptable range. It does help a bit with migraine sometimes -- the vasoconstrictive effect I guess. blue

Great to see an article about POTS in a widely read magazine. I hope Australia's 'Cosmo' mag picks it up and runs with it. In the comments section someone brings up the point that 'POTS is not the end stage of dysautonomia.' The reply is that the writer did not mean it to sound like that, but could understand how it could be read that way, and realized it was not an 'end stage.' blue

I've been seeing the same dentist for over 10 years and had lots of pretty major dental surgery. Together we have learned how to manage my visits. But I will copy and send him these papers as he's the sort of guy who is very kind and wants to understand his patients problems. I haven't had a local injection containing adrenalin for 2 decades now. I worked out back then it was a big factor in my anxiety and dentists and recovery from dental work. I remember getting a shot with adrenalin from an earlier dentist who 'forgot' I didn't want it and feeling my heart feeling like it was going to beat out of my chest - fast. I had to get up and move around to deal with the tachy. Nevertheless I'm still nervous at the dentist even given how good my dentist says I am as a patient. Now I have another problem. I am becoming more and more sensitive to the numbing injection. After each visit over the past year or two it has resulted in my skin getting redder and redder and now burning. It usually comes on a few hours after the injection. So -- a developing intolerance that could turn into an allergic type response. I'm getting used to these types of responses eventually occurring with a number of drugs/chemicals. Perhaps it eventually manifest as an allergy. I saw my allergist only last week and she's given me a regime to follow that involves anti-histamines and pretty large doses of cortisone. 25mgs prednisolone on the day prior to dental visit. 25mgs X 2 a day on the day of the injection. 25mgs (if it's enough)the following day. I am hoping this stops my body reacting to the injection. blue

Thanks, Margie bee. wise advice from you and I appreciate it. Actually, 'focussing on just getting healthy' and not 'separating the two' sounds pretty good. I see my psychiatrist Friday next week and being able to think through this stuff and get such good, 'been there', responses is, I think, hopefully, helping me find some equilibrium. What I do find reassuring about myself is that I'm a mother with three grown children (and three young grandbabies) and when it comes to helping them emotionally when they have their life's troubles I'm really very good at it - that's the feedback anyway. If only I could apply to myself that which I do and say to help my kids. blue

Thanks Katybug. I am second guessing myself. So exhausting and confusing. And disempowering, also. All my sympathies re your migraine. I feel for you. Your gesture to me of responding even when in pain of migraine shows an empathetic nature. blue

Hi again, ramakentesh, I'm sure symptoms of anxiety, panic are related to pots. Not sure about depression. I have been diagnosed with dysthymia -- low grade chronic depression punctuated by severe depressions. I also have experienced episodes of depersonalisation and although terrifying when they happen they are extremely rare so it's likely it's a consequence of very high anxiety. I have no idea why the second generation antipsychotics help me mentally -- they do affect dopamine as well as serotonin. Anti-depressents are designed to keep serotonin levels from being taken back up but if I take them they make my pots much worse without helping my anxiety/depression. It seems I can't have my serotonin levels messed with without having my dopamine ones messed with as well? No medical background here but perhaps there's more at work in these anti-psychotics than effects serotonin and dopamine levels ???? At any rate zyprexa will effect me negatively with at least one symptom for sure -- constipation. But from past experience it calms my mind quite effectively. Thank you, blue

I'm told I have both mental illness and pots. No, I don't have psychotic symptoms. I do have episodes of depersonalisation and they are very scarey when they happen but they happen rarely. They can be bought on by high anxiety. Thanks for your response, ramakentesh. I realize my post was confusing. My ability to structure anything clearly and to the point is declining badly.

I just looked up sjorgrens on wiki. I noticed there is no cure but there are treatments. Like dkd, I hope you find good treatment options. blue

Hi, I now often question my subjectivity re medications and also I tend to question that I might have thought some of my symptoms - although tachycardia on standing, migraines, severe problems with constipation etc (all measurable) surely can't be in my mind and my psychiatrist doesn't believe they are either. Some of the other symptoms might be, though. That's the problem -- with a misdiagnosis of panic disorder that stood for nearly 2 decades before being diagnosed with pots -- well all that CBT of doing the things I feared -- like standing in line and feeling shakey and ill -- but doing it anyway, really took a toll on my body and messed with my mind and left me always questioning if things happening to me were 'real' or if I'd made them happen. I was a poster child for CBT for panic disorder. I didn't back down from doing anything despite how sick I got until the day I was out walking for exercise and I fell down and could not get up for over an hour and it took me, stopping and resting because I had to - nearly an hour to get home -- a walk that previously would have taken me 5 minutes. Not denying I am an anxious depressed person but the panic disorder diagnosis was a 'neat fit' (all in my head) and the 'balance problems' I continued to complain about were investigated (sent to a neuorologist) only to be told I had a 'garden variety balance disorder' and to get on with things. It was a decade ago when symptoms really increased and eventually led to a diagnosis a couple of years later of POTS. Often, Panic disorder is a known common misdiagnosis for what is really pots. The other day when at the allergist I mentioned that I don't often trust my judgement in reaction to medications. She was surprised but fortunately we experienced a demonstration that my judgement is questionable. While both of the following medications make me jerk a bit a few times after I've taken a wafer (something I don't worry about because of the good outcome I get from the med), I told her that I have a red, skin burning reaction to Zofran Zydis but did not have it too Ondaz Zydis (I take this occasionally when I get very nauseous with migraine - reducing nauseous feelings makes me a bit more comfortable and often reduces level of migraine). She looked up in her book of meds and what each med contains and it turned out that both the Zoftan and Ondaz wafers contained EXACTLY the same ingredients -- down to the saccharine. So much for my burning skin after Zofran and not after Ondaz. It was 'in my head.' My next guess will be that now that I know there is no difference then I'm going to have skin burning after Ondaz also. (Oh, I do experience skin redness after taking both, only burning occurred with the Zoftan). I suspect the anxiety - which reduced a lot when I was first diagnosed correctly with Pots but which has returned as physical things continued to be so difficult to deal with - does make pots symptoms worse and I can't see how it wouldn't but have to say that any anxiety meds have little impact now and meditation will make me feel better while meditating but does not carry over to the rest of the day when I'm faced with having to do challenging things that well people think nothing of doing. I'm feeling very lost. I do suspect that if I went back on Zyprexa -- an antipsychotic used for bipolar - but also used off label for anxiety and depression I would feel a lot better mentally -- FOR A WHILE. But the side effects of Zyprexa are pretty bad and the two years I was on it after the pots escalated and before I was diagnosed caused great weight gain (now a problem for me - I'm way too fat) and also has a high profile for leading to diabetes type 2 -- with my weight gain I now have I'm borderline in that area now. Plus it's a CNS depressant and I already take meds for pain that have that impact as well. Plus I have sleep apnea (untreated at the moment because of pressure urticaria and the pain the mask causes) and a similar med to Zyprexa with less serious profile -- Seroquel -- causes me to wake up gasping for breathe -- cns depression of breathing. I have the script for zyprexa but it's expensive (even here in Australia) and I really don't want to fill it to find myself waking gasping for breathe and trying to battle further weight gain etc.But I do yearn for the calm it helps provide -- it's not perfect but it's better. If you are still reading, I have had allergic responses to meds that were undoubtedly real. Anaphylactic reaction to aspirin -- treated quickly thank god. Anaphylactoid reaction to one of two meds -- we still don't know which one it was so I have to avoid both. And a reaction to a opiate patch -- itching, redness, and a six inch swelling around the patch that was witnessed by a doctor. I do wonder now if I'm allergic to codeine like I thought. I took it one day after taking it on various occasions and by the end of the day I had an allergic type rash reaction on my tummy area. I didn't take it again until some months later and when I did I took it one day(to test for allergy) and again the rash appeared. But can someone make a rash appear through anxiety?. In the same spot -- and because I was looking for it and expecting it? Sometimes I think 'take the zyprexa', and hope it doesn't cause depressed breathing (it didn't for the two years I was on it those years ago) and just battle with or accept the weight gain and the consequent prossible diabetes and have a bit of peace of mind. I'm truly tired of being wired and afraid. I'm 57, I'm not frightened of my own death but I am completely over enduring the constant anxiety and the low grade depression that flares into much stronger depression at times. I've allowed myself to become very isolated and I'm worn out. Plus in the back of my head I'm thinking that if the zyprexa doesn't work I will have nowhere else to turn and my feelings of aloneness and confusion will then be insurmountable. Oh, and the zyprexa does, I know for sure, slow my bowels down. Something that is already a problem. I just can't work out how to get a handle on this anymore. I never could. I thought I would but I just haven't managed it. I've had pots symptoms crises a number of times and a pretty lousy quality of life physical -- not unendurable but hard to endure -- I handle it but what eludes me is peace of mind and enjoyment of life. Not looking for constant happiness, just the ability to enjoy some things without what feels like the black cloud of pots sitting on my shoulder pouncing or ready to pounce. I'm only half living. My sense of humour in the real world is completely gone. I occasionally still have a laugh at something funny in a movie or book but real life feels too grim to laugh about (although I can have laughs with my psychiatrist too, he's not emotionally invested in my problems. Everyone else around me is - and like most people they really want to get away from me. I don't blame them. I actually understand it. It's a very human response. Life is hard for everyone much of the time. It's hard to be around someone that finds life constantly difficult. blue

Sheila, Like Hope I wear a lot of cotton clothes. Anything else with make my sore skin worse, and hotter and when I sweat I need the cotton to soak it up. Plus for me the cotton has to be very soft and good quality. I'm the crazy lady in the store who holds a t-shirt up to her neck (skin on my neck is the most sensitive) to see if it's soft enough. I get so hot that now the weather has turned cold here in Australia --we are a week or two away from official start of winter - that I walk around the house with no heating and love that my feet and arms etc are cold. I love feeling cool when I sleep. UNLESS, I'm having one of those rare episodes when I can't get warm. It's like I have hypothermia or something. Freezing cold and can't warm up no matter how many bedclothes I put on myself etc. In my case it's as though my body decides after a few hours of freezing and shivering, shaking etc that it's done it long enough and then I go back to being too hot. My crazy, crazy body. I've experienced the same sort of thing post general anaesthesia. Same thing happened also after taking one tablet of an antibiotic 2 years ago, also. Other times I can find no direct cause and effect. But I always get overwarm again afterwards. I can never tell anymore what the weather is really like. I'll be out in jeans and t-shirt while others will be in fleecy tops and coats etc. blue

H Sheilai, I get the adrenalin rush about 5 minutes after I settle down to sleep. For example I'll read until I'm just about dropping off to sleep, put my book down beside me without raising my head or anything and just touch my lamp (it turns on and off with a touch) and that way I'm about as relaxed and as sleepy as I can be. Lying there drifting off to sleep and then wham, tachy and feeling adrenalin rush. I used to lie there and wait it out but now I get up and walk around for a bit to use up the adrenalin and then go back and start off the procedure of going to sleep all over again. It can also happen when I'm falling asleep in my wing chair. I sit in it to watch tv or read or use computer during the day or evening and have my feet and legs up on an ottoman. I will feel myself drifting off while watching tv and when almost asleep I get the rush of adrenalin and tachy. Although I don't have to get up from my chair -- it passes more quickly -- and I think this is because I'm sitting upright already. I use this chair and ottoman to sleep on when I have migraine too. Often is the most comfortable place I can sleep then. Especially if I'm finding it hard to find a spot on my head where it doesn't hurt to rest it. (A relatively new phenomenon in my assorted types of migraine. I think it's probably neuralgia and migraine combined when this happens. I don't have this problem all the time but it comes in bouts. I'll have it for weeks on end then go through shorter periods where I don't experience it. I also have colonic inertia. Have not been tested for gastroparesis. After an endoscopy (showing a submucosal growth in my stomach), colonoscopy, small bowel motility test which showed slow motility and other tests gi doc and I decided I probably did have gastroparesis but when he offered the test for it I declined as I was told not much gi doc could offer me to help it. blue

I'm glad to hear you are getting such a good response to the vegan diet, Issie. I can't follow one because I'm intolerant to anything but low salicylates (and that means intolerant to nearly all fruit and veges), amines and glutamate. I have problems with some grains too, like rye. Although the diet I follow does help with red, burning skin reaction, hives etc., it's just not a very healthy one. It could be healthy (albeit boring as all get out which my diet is) but I just can't manage the shopping and cooking -- time spent in the kitchen etc. - that it takes to maintain a healthy fresh version of the diet. So I eat a boring, same old food every day, diet and now take a vitamin supplement (one that I can tolerate -- it was hard to find) that i'm relying on to keep my vitamin levels okay. What the well respected hospital clinic that deals with food allergies and intolerances did not know to tell me 8 years ago is that a small number of people become more sensitive to the chemicals in foods as a result of this diet, not less sensitive as usually happens. I'm now more reactive than I was before I was advised to start the diet. A story that is becoming familiar to me -- I seem to be regularly jumping from frying pan into fire whenever I try something new now. Not always but usually, anyway. Well, that turned into a vent. LOL. Sorry but I need to leave it here because I need to feel I got that out of my system for now. BTW, Issie I have had anaphylaxis and have some understanding of the way it works -- I am anaphylactic to aspirin. But I've also had an anaphylactoid reaction -- which is, I read on wiki, a mast cell degranulation caused by some offending substance. I was told that anaphylactoid reaction could turn to anaphylaxis -- it's just much slower -- by someone sometime but wiki made no mention of this. Do you know what's true? It was certainly scarey and very uncomfortable but not as terrifying as anaphylaxis. For the life of me I can not work out how 14 years ago I had no known allergies to anything and in that time have developed numerous allergies to meds, and to I don't know what, as well as food intolerances and 'adverse reactions' to some other meds, that aren't allergic ones but felt like I was gonna die. I'm now 57 and at ripe old age of 43 my body starts going nuts to meds and foods one by one and then in a rush. blue

I have had constipation problems for 8 years now and have no problem anymore telling a gi doc exactly what is going on.Truly, they have heard it all before and I've seen 3 over the past years and not shocked one of them yet. However, they might not have heard of POTS. My first 2 gi docs had never heard of it. Finally, about 2 years ago, I asked my pots doc for the name of a gi doc that would know something about POTS. This was a good move. Although he hasn't been able to help me much more than the others he's very aware that POTS makes treating chronic constipation much more difficult for me than some other people he sees due to my varied and 'impossible' reactions to most types of laxatives. blue

I have problems with twilight and general anaesthesia and have found IV saline to help. Not the full answer but every bit of help counts. I'm now having trouble with dental anaesthesia (with no adrenalin added). Am having skin/allergic type reactions to it that are getting stronger each time now. I need dental work done now but am waiting to see my allergist in May before having more dental work. Last few times I've taken anti-histamines before, on the day and days after dental surgery but last time the adverse reaction was enough to scare me off from more dental work until I speak to my allergist. SCARE is exactly the right word here. I can't always be brave. I also want to ask the allergist if we add the adrenalin back in (haven't had that for years before I was diagnosed with pots because of the increased heart rate thing) perhaps by isolating the anaesthesia and numbness it might also isolate and stop the whole adverse skin reaction -- that involves increased agitation too --. I.E. Suffer in the chair instead of maybe suffering after for much longer. ****, having adrenalin in my anaesthesia is a scary thought too. Not sure I'm game. blue

So many times, during the night and in the mornings I wake up feeling like I'm coming down with a flu or some other virus only to find, overwhelmingly, that the feeling passes after an hour or so. It's weird. Or probably POTS. Blue

yes, yes and yes. ive started using a meditation tape so I can get back into meditation daily. this helps. if I could live on a beach and swim in the ocean most of the time I think that would be perfect 4 me. blue

Hi I'm in Australia and we call mirilax, movicol here. I get mine from a compound chemist so it has no flavourings etc. Essentially it's polyethelene (sp?) glycol or macrogol 3350. I"ve never tolerated it all that well but have had to return to it over and over as other forms of laxatives have done a number on me causing cause 'intolerance' reaction adverse reactin. One cause an 'anaphylactoid' reaction. Each time I took movicol I'd have some redness and then sunburned burned feeling. So I'd use it to get my bowels going for a week or two then swich to glycerine suppositories and occasional fleet enema. I had an abdominal xray about 6 weeks ago and it showed that constipation was at a moderate to marked level. I now have an appointment with my gi in early June. Last time I took the movicol it made me feel very ill. So I'd been avoiding it for some months and just using the suppositories etc. Last Wednesday, though, I knew I had to take it, I was afraid I might have left it too late actually, I took it over 3 days. Skin getting progressively redder and hotter. On the night of the third day (I'd taken it in the evening -- usually I take it in the )) about 3 hours after taking it I went to bed and found it really difficult to get to sleep as my guts were more uncomfortable than they'd ever been taking this stuff. I got to sleep but woke Friday night/Saturday morning abou 1am feeling really sick. Each of the three nights i'd woken up feeling unwell but the third night was markedly worse. I remember waking up and saying 'oh, i'm really sick,' thinking I had some sort of virus (as I do -- never blame pots or meds first?). I got up to go to get some water and go to the bathroom (I do this a few times during the night as I will dehydrate if I don't drink regularly even during the night and then I have to pee regularly too). I had that sever sunburned feeling and it took me quite a few minutes to get up out of bed -- just raising my head was tough and this sort or reaction is not something I get with pots anymore.. When I stood up walking was more difficult than it has been for a long time. I was staggering. My breathing felt strangely affected -- I feel it might have been an allergy reaction, maybe, not sure. My head felt like it was twice it's normal size and had a familiar feeling that I had cement in my head. I made it to the bathroom and looked in the mirror and face, chest arms etc were red as were the whites of my eyes. Breathing felt a bit laboured but not asthmatic and I had no puffer to use as my son had borrowed mine (it was a brand new one) that day and taken it with him. Anyway, it wasn't until this morning that I have started to feel a bit better. I did do a bit of research on the movicol/mirilax and read a lot of responses written by people who had used it. Overwhelmingly they were positive reports on the laxative. Only a couple were negative. One of them expressed his reaction exactly like I felt. He said he'd felt 'deathly ill' from it. And that's how I felt. I'm wondering if anyone else has a problem with this medication. macrogol 3350 is in a lot of medications as a filler or tablet liner I think -- not sure in what form, really. I know it's in one of my medications I take but obviously in not large enough doses that effect me -- not yet anyway. I can't risk taking it again so I'm just going to have to muddle on until early June until I see my gi. Or end up in hospital first with a burst colon, one of my greatest fears. blue

Hi Auntwinnie, Glad you found this forum. There's a wealth of info here. I'm in Australia and although we do have a few pots specialists now (in areas I can't manage to travel to) I was not diagnosed by one. My allergist, a renowned doc at one of our best hospitals, who had been treating me for two years thought there was 'something else wrong' with me and sent me off to see this highly thought of vascular diagnostician. (BTW, I was also seeing a neurologist at the time who was unsuccessfully treating my almost daily migraine). The vascular doc recognized I had a form of dys at my first appointment but did not tell me as he wanted to run tests etc. I found out later he suspected this -- he wrote it to the doc that reffered me to him and I got a copy of that first letter from him. At my second appointment a month later, after all tests had been done, he told me I had Postural Tachycardia Syndrome. At the time I was sitting in a chair opposite his desk with my head resting on his desk- not something I'd usually do but I was physically just about finished. The effort of getting to the appointment had been huge. I remember raising my head and saying 'Can you write that down for me, I'll never remember it.' He did so -- wrote it in full and also the acronym POTS. I was incredibly relieved to get the diagnosis. I'd never heard of such a condition and not being a medical person in anyway I didn't even know we had an ANS. I was so relieved because for years I had been treated like a hypochondriac by so many doctors and friends and family and had come to believe I might be one. That's a nasty label and I feel for anyone that has a hypochondriasis or any other form of somatoform disorder.I feel for us dys/potsies too. blue

Great stuff, all. Reflects my problems in a way I can actually concentrate on. Have a big smile on my face now. I listened to a TEDx lecture and this guy said life is really about doing stuff to make others happy. You guys have done that for me today. Ta blue