blueskies

I can have swinging bp readings. Last Tuesday it was 99/71 with pulse rate of 121 at 7am in the morning. By midday it was 146/87 with pr of 83. So they do swing but not what I'd call wild swings. Today my bp reading in the morning was 150/86 with a pulse rate of 83 at 6am. It's midday now and it was 130/76 with pr of 72. It's been higher than that at times. Not lower, for some years now. I've had pulse rate readings that are higher. They can be high upon waking in the middle of the night. And I know that both bp and pr readings are higher at times when I have to walk for further than I feel well enough to, or get caught standing sometimes. Migraines really push up bp readings for me. These past few days have seen me with lots of episodes of breakthrough migraine pain that generally pushes up my bp readings. So does the pain and anxiety caused by erythromelalgia. Just wondering if anyone else experiences swings that are by no means extreme, but still distinct. I'm wondering if it's a natural thing for bp readings to swing like mine do. Or a pots thing. I'm hoping some of you with some medical knowledge can fill me in. thanks, blue

Thanks Arizona Girl, I liked this paper. It does, as Ramakentesh said, mirror a lot of what we talk about on the forum. Just one example: That some of us can exercise and some of us can't. And that they don't really know about prognosis. Plus hopefully this paper is a sign that the British medical system is catching up when it comes to POTS. I've read quite a few times posts from Brits who say that they don't get much respect or treatment for POTS. I'm in Australia and 8 years ago when I was diagnosed with POTS I remember typing POTS and it's name in it's longer form into the search engine and almost nothing coming up. Thankfully, this is no longer the case. blue

Last week I saw my pots doc -- a vascular consultant -- for the first time in a few years. I've been seeing my other specialists much more regularly -- my gastroentorolgist, allergist/immunologist, pain specialist, even my neurologist a couple of times (and he never helps me), and another specialist that I can't think of at the moment. (Brain fog is so bad today I couldn't follow plot line of Bold and Beautiful so I know it's baaaad!) . My apologies if I ramble a bit while trying to get to my point(s). Anyway, I knew I had to make the effort to get back to see him. I first saw him about 8 nearly 9 years ago when he diagnosed POTS and Erythromelalgia. I was seeing him quite a bit in the first 5+ years following diagnosis but my different symptoms that involved the most pain and distress were the ones I was focusing on:. Chronic constipation, allergies and intolerances and chronic daily migraine and I was using up my spoons visiting the specialists that treat those problems. It was only the increase in erythromelalgia flares and pain that finally motivated me to get back to see my pots doc. I had a long consultation with him. Very hands on. Which is something that most of my other specialists (and my gp) don't do much of. My pots doc does the full physical before ordering further tests. He's a true old fashioned genius diagnostician -- and other doctors have commented on his abilities. I'm lucky to have found him. I suspect I probably still wouldn't be diagnosed and have gone mad by now. So, last week, hoping for some answers (some newish treatment?) for my problems, I did get probable answers but not of the kind I was looking for. He found that I have an enlarged thyroid and he's also said, after listening to my chest for some time, that it sounds to him like I have MVP. I wasn't shocked at the MVP as I've been dragging myself around the house mostly, over the past three years, feeling like a rung out dishrag but getting episodes of tachy when resting, waking with them during sleep etc. Just rolling over in bed will bring it on. I had the ultrasound for thyroid yesterday but don't yet know the results -- but as well as explaining a number of symptoms it could explain my increasing depression too. Depression ain't all in the mind and a thyroid that doesn't function properly is a cause of it. My echocardiogram is on Friday. My pots doc seemed pretty sure it was MVP and that test should confirm it. I wasn't really surprised when he said MVP because I know -- thanks to the members on this forum who have it -- of the high number of POTS patients that have it. It might be dilated hypertropic cardiomyopathy -- hopefully of the mild type - which runs in the female line of my family. It might not be, I hope not. But Friday should tell. It's all a bit up in the air so far. But I could be getting more answers to why I feel so hellish and hopefully some effective treatment. It's also a warning to me to make it a priority to see my pots specialist more often so we can concentrate on the 'bigger picture' -- that something else may be going on -- rather than only seeing individual specialists for my distinct, more painful problems. Sorry I've rambled but I'm at a point where I really can't think straight. I've been trying too. But getting to the point has become a circuitous route now. Not only with dealing with pots -- those **** moving 'goalposts' -- but explanations of why I feel so crap have become more and more detailed. I can't stick to a point to save my life. And I've tried to discipline myself to do so. No luck. blue

Hi icelizard, Just the other night I woke feeling sick (not nauseous) but weak and trembly and a sort of wired feeling. I decided to get up and take my bp so I could get a pulse reading and my pulse was over 120. Can't remember the exact number. But it was confirmation that my pr sometimes increases during the night. blue

Hi Sarah, I'm just wondering how you are doing now. blue

I've had a laminectomy surgery done since being diagnosed with POTS. I made sure my neurologist and the anaethetist both consulted with my POTS specialist. The actual general was fine. It was my first experience of a general where I did not feel like **** afterwards. Pre diagnosis I'd had quite a few operations and always felt so ill from the general, afterwards. I used dread how I felt when I woke up. So I think that the consultation between my specialists was very beneficial. ( I did feel like **** though, because they were operating on my lower back I had to lie flat for days afterwards. Which is bad for my migraine). I do suspect that anaesthesiology has really improved markedly since I was young. In leaps and bounds. I also had those weird things around my lower legs, like big bp cuffs, that inflated and deflated -- keeping the blood pumping. blue

or not eliminate. sigh. blue

Hi Bellgirl, Botox is one med I will try again. I had no success with it on my first go -- I was sent to a neurologist who specializes in giving botox to migraineurs. But I am going to try it again at one point. I read somewhere that botox is now partially covered by our public health system for migraines and other things. It was a very expensive option when I tried it -- no govt. approval, then. I'm in Australia. But because it's not such an expensive option anymore, I thought I'd give it a second try to see what happens. My migraines have morphed in the past couple of years -- gone up in pain level at times and I often experience different type of migraine pain -- so it might be worth the second go. I'd love to stop the opiates. I tried to stop recently to see what would happen and ended up with the worst migraine pain I'd ever experienced. I'm getting the 'old' treatment at times too. I'm 58 and I'm not kidding myself - I'm older. But there seems to be an inherent bias sometimes against post-menopausal women in many areas of medicine that I had not experienced when I was younger. It is like I'm not supposed to expect to feel well anymore. I'm not being unreasonable. I don't expect to feel great or well or the time. I'd just like to feel it some of the time. And that's aiming low, I think. blue

Hi Sarah, Yep, I've tried it all. Sometimes I wonder if trying all those migraine preventative and abortive meds didn't set off my chemical sensitivity problem. It happened around the same time. At the moment my migraine specialist has nothing new to offer me either. blue

Have moons on my thumbs that I can see easily, and what looks like very small moons on some of my fingers. I need my glasses and strong light to see them they are so small. The very small moons on my fingers are new. I just noticed them. They weren't there a month or so ago. My thumb moons were absent until a year or so ago. I also have vertical nail ridges. One of them is white. I put this down to aging - sadly, nails age too and can end up looking not so good. I've no idea what any of this means. But the return of some of my nail moons does not coincide with me feeling better. I'm having a pretty crappy time now, pots wise. Just when I think I've hit my rock bottom it gets worse. I'm used to ups and downs with POTS but can't remember last time I had an up. I've seen doctors on tv comment on presence of moons but they never say what they indicate. Totally perplexing. blue

Great advice Arizona GirlRgny , I have constipation problems and ranitidine cases my constipation to become total - no movement. as does zyrtec. My allergist agrees with my observation. Both seem to cause dry skin, too and she agrees with that. I've got a lot of med sensitivities plus allergies. And I question myself all the time too. Sometimes I may be mistaken but usually my observations have merit. On occasion I've tried a medication and had too many side effects to continue with it but I've found that I can sometimes try it again at a later point and it is okay. My body symptoms change. And my reactions, or lack of them, to a med can change to. Of course, if I am allergic to something then that med is out. Blue

Thanks Katy bug, I hadn't thought of topical antihistamines. I'll look into your suggestion. Good one! The one thing that has changed in my life is my dad dying late December. He was old and very sick so it wasn't a shock but it's definitely had me churning a bit. I think we all hung in there when he was so ill for years and then his death ..... I suspect the stress might be hitting me now. I don't know. Otherwise, I've tested and rejected so many other possible causes.

Hi potluck, There are times in the day when I'm usually feeling a bit better than at other times. Afternoons and early evening is my best time. The worst time is definately the morning and I can have some pretty rocky nights. It doesn't really match hr rate as I can have high hr on exertion or just sitting or lying at any time. if I'm standing up or walking it's all going to be harder. I had a lot of racing heart last night every time I woke, just after posting last night that racing heart, when it comes to sleep time, only happens when I'm dropping off to sleep and wakes me up. The gods must have read that post and decided to change things around a bit - again. grrrrr! And my meds are spaced 6 hourly at the moment. So no changes there -- nothing wearing off or kicking in etc. blue

Nothing much to add except that just as I'm falling asleep I will usually get a bout of tachycardia. This has been happening for a couple of years now at least. It wakes me right up and I find it's best to get out of bed and go get a drink of water or something just to move around for a bit and then go back to bed and I sleep.Occasionally I have to start my whole 'wind down and relax' get ready for bed routine(that I do each night) over again. My very medically uneducated guess at why this happens is that my body just doesn't like to transition from wake to sleep. I also get nights where I have muscle jerking as I relax to go to sleep and this can last up to a couple of hours then I'm about to drift off and the tachycardia starts. I wake about 4 times a night but so far have not experienced either muscle jerking or tachycardia when I'm' going back to sleep. I only have it when I first try to go to sleep. Knock on wood and don't let the gods hear that! in my 'early pots' days I used to be exhausted and asleep as soon as my head hit the pillow and I'd sleep at least 10 hours without waking. I'm getting to a point where I get anxious when writing down anything positive regarding my health in case I jinx myself. It's nutty, I know it's nutty but it's true. blue

When I was healthy I used to be a summer person. Now, I've had pots for many years. I also have erythromelalgia (EM). Up until this winter (I'm in Australia) I've spent the summers hanging out waiting for winter because I tend to feel a bit better in the cold weather both pots- wise and EM-wise. Only, this winter, I've been absolutely miserable with symptoms of POTS and EM. The cold air coming off the snowy mountains and ocean is horrible and there's been a lot of wind. I've stayed inside as much as possible but the cold still seeps in. I don't want to turn on a heater because that will cause my EM (hot burning skin) to flare. The thing is, where I live, we don't get much of an autumn or spring. It's usually summer and winter with a few temperate days in between. I was thinking today that maybe summer is now better than winter for me because at least I can swim in the ocean in summer and that helps with POTS, EM and has been known to stop a migraine. The water now would be too cold for me. I get hives from cold water and also can't warm up for hours after swimming in it. I'm just being a complainer today. I've had one symptom after another today plus I've got really itchy skin on my back that is caused by the cold dry air and I can't scratch it because I get welts when I scratch and I can't take an antihistamine because they make constipation total. Stop my whole digestive system working completely. I'm hitting brick walls and going around in circles with all this stuff. I know many of us are. This has been the way of my life for the past 12 years. Yet, I know I'm lucky in that I'm not bedbound with POTS and hopefully I never will be. I'm mostly housebound and couch-bound and have been for a while, but so far I've been able to stop myself from spending days in bed -- I am able to make myself get up in the mornings. If only to move to the couch on many days. blue

Hi, I have chronic daily migraine. At age of around 50 I was put on periactin. It worked beautifully for quite a while. Then it stopped working. I took a 'holiday' from it on the neurologist's advice and then tried it again and it worked. This working/not working pattern repeated itself for some years then the periactin didn't seem to help enough at all with migraine. I was always bemused that a medication meant for teens with migraines helped me. But I also have a lot of allergy issues and periactin is an old generation anti-histamine so it sort of made sense. I would still use it as an adjunct but it really does a number on my constipation problems. It blocks me up completely. Like a lotof other meds. It may take a while to start. As I said, I was 50 not a young teen. I needed 12mgs a day to keep the migraines away. It worked within days for me when I first tried it. Oh, it helps with appetite. I was always very hungry when on it and ate far too much. It is also used for anorexia, i have read. It also caused me to be extremely tired. But that side effect did lessen over time. blue

Hanks for that,Kriss not sure if it is available in Australia yet. Fingers crossed we do get it. We never got access to amitiza. Can only hope I get the chance to try this new one. Blue

Hi Sarah, I'm sorry you are having such a tough time of it. Not commenting on your seizures because I don't have them I just wanted to say that when I had my last MRI on my head about 7 and half years ago - I was in hospital at the time because of POTS stuff, and I got to see a number of my specialists (i seem to collect 'specialists'). My neurologist (who is not my pots doc) ordered an mri because of the frequency of my migraines. He said my head was fine but that I had quite a bit of 'white matter' but not more than he would expect of someone who had migraines at the frequency I experienced. I was 51. Hence, I took it to mean that lots of migraine caused more white matter. As insane as it sounds I was glad to have the white matter because it seemed to leave no one in any doubt that I was experiencing as many migraines as I said I was. They stopped questioning my migraines after that.I'm not really sure if it was the MRI or the stay in hospital when they witnessed my migraine intensity and frequency but from that period on none of my docs have questioned my migraine frequency. They just finally treated it. As best they could. blue

Hi Sarah, i took magnesium sulfate on a once a week basis 4 years to empty my bowels. I would have flares of erythromelagia that lasted three days after each dose. The whole process struck me as pretty medieval. However, on the day each week that I did take the mag sulfate I never experienced migraine. I got migraines nearly every day (still would but low dose opiates help quite a bit - not total, but best result from a med to treat migraines yet, in my case). I was struck, at the time, how I did not get a migraine on the days I used mag sulfate although the dehydration caused by it (like doing a colon prep once a week) often caused me bad migraine on the next day or two. At any rate, I noticed the connection of mag sulfate and no migraine (on the day) before I began to read about intravenous mag sulfate as an effective abortive migraine treatment. So if I had not developed problems with mag sulfate I would definitely have tried it by now 4 migraine? I am pretty sure I have mas, given my ever growing allergies and in tolerances to things. I have experienced both immune and non immune anaphylaxis, milder allergic responses and have multiple chemical/food/med in tolerances that generally cause painful flares of erythromelagia. I,myself hoping to get my pots/erythromelagia doc to speak with my allergist ( they know each other well) to define exactly how many I have problems going on and hopefully end up with a treatment plan that is more effective than having no real plan, has been. typed from my new tablet so I'm sure there is a lot of grammatical errors. My apologies. blue

I have developed many allergies and chemical (including food and medicine) intolerances. My allergist told me not to take large doses of vitamin c as it was very possible I could react badly to it, at some point. (I had wanted to use big doses to make my bowels work -- ie to try and treat constipation with vitamin c as some pots patients were doing at the time -- this was some years ago). So, if have allergy/intolerance problems I would check first with an allergist to make sure that increasing vitamin c to large doses would be okay. blue

Thanks Sarah You explained the 'anxiety' very well. I have similar experiences. I'm exhausted. Also Sarah, nearly 4 years ago I experienced my face going red and the skin lifting in places and peeling. It was gross. Not sure is it was the same sort of burning you were talking about but I looked like I'd been badly sunburned on the face and then it peeled. We may have 'talked' about this before. My memory is reallly bad now. Neither my doctor or I could be sure what caused it but the large dose of magnesium sulfate I'd taken to get my bowels to work was probably the most likely candidate. I have not taken it since. I have experienced further skin peeling but not all over my face. The times it's happened since, has only been in one or two small areas. Knock on wood. But my skin was never the same in places. I have developed rosacea --that's what they are calling it -- from the repetitive skinflushing and drynessmade worse by having Erythromelalgia. However, I'm not convinced it is rosacea because my skin responds to cortisone cream used sparingly. It does not respond to the rosacea cream I was prescribed. Good discussion everyone, I've been reading this post with great interest. I see my pots doctor in August (I also have erythromelalgia (EM)which he also diagnosed) and I've had to acknowledge that the past 3 years have seen me slip backwards with POTS and the EM is getting worse and am going to ask him about clonidine. I was restarted on telmisartin last week because my bp was consistently reading high each time my gp took it. I get severe migraines and my bp will go up even higher with them. I became very concerned that as I was experiencing high bp readings (without migraine) that should I experience very painful level migraine my bp reading would reach dangerous levels. I did not want to have a stroke during a migraine. My gp agreed with me and I'm going to stay on termisartin at least until I see my pots doc in august. blue

Hi Katybug, I'm so glad to hear that the surgery is done. And you are eating, already! Good sign. Am wishing you a quick recovery. blue

A beautiful TED talk, I thought. No. 6 in the playlist -- by a doctor, Abraham Verghese. On the importance of touch in healing. The 'old fashioned medical exam.' He talks a bit about CFS at around 11 minutes but the whole talk is touching up until the end. http://www.ted.com/playlists/70/what_doctors_worry_about I've watched 3 of the talks so far and so far, all three were good. Just thought I'd pass it on. I think this doctor puts his finger finely on one of the problems with health care (just about anywhere in the world) today. I've also watched talk number 1 and 2. Both excellent in other ways. blue

Hi barb, I have learned from a forum that erythromelagia patients don't all have those extreme levels of pain. Levels vary between people. TCP, i had a very similar night last night. And it's winter in Australia It has become like no season Iis much of a friend anymore. Very frustrating. written from my new tablet so please excuse typos, blue

Hi Merlin, I see your point. blue