blueskies

I have read at least one (and I think more) research papers on the net that have said that exercise benefits most pots patients, but not all. Sorry I can't give you any links, but if you search for it you can find them. I didn't keep any of the links because it didn't concern me - I am a person who can exercise regularly, only to find myself back at the 'beginning' and unable to exercise for an extended period of time. But I can exercise quite a bit for months at a time before sliding back. Luckily I'm not one of those people who find exercise impossible. blue

Hi again Kharrina, At one point, about 7 years ago I was taking an ergotamine/diphenhydramine mix for migraine relief. Ergotamine is a strong vasoconstrictor. It helped me abort my migraines and also, looking back, I was not having as many heat problems, that I can remember, for the whole time I was on it. And when I did overheat I could trace the reason why. However, due to my age, I was 51, and the fact that ergotamine is a dangerous drug/a very 'dirty' one, as 'they' say, my pots specialist and my pain specialist took me off it and put me onto low dose opiates while I was in hospital with pots problems for a few weeks -- the combination of coming off a vasoconstrictor and taking opiates, that are mast cell degranulators (not sure if that's exactly right but forgotten their affect on histamine release)..... well, when I got out of hospital and away from the hospital's marvellous air conditioning the first thing I noticed was I was really, really warm (although not as 'warm' as now). I put it down to the low dose opiate regime and the beginnings of summer, but now think the ergotamine, being a vasoconstrictor, was definately keeping me cooler and stopping me from flushing as much. As an aside, the diphenhydramine ( I think this might be Benedryl, that U.S. members talk about) was helping with my hives etc, which also meant it was helping with heat problems to a lesser degree. Long story short, yep, I can see how a vasoconstrictor could help with this problem. It seemed to for me. blue

Thank you spinner and Kharrina, It's a relief to know that other's have this problem too. I was diagnosed with erythromelalgia at the same time as I was diagnosed with pots. So perhaps it's the erythromelalgia symptoms getting stronger and changing in form. At the time I was diagnosed I wasn't sweating, spinner. A hot flush, even during the earlier years of menopause when I should have been dripping would leave me dry. For 6 years I did not sweat at all that I could notice -- I figure I must have a bit but when I exerted myself to say, clean the bathroom, before that 6 year period I was one of those people that would sweat like crazy. Any exercise, especially stuff that would demand cardio levels would cause it. Then I stopped sweating. I always drank more fluids than the average person. Heaps. When I was sweating and when I wasn't. I've always urinated very frequently. I still drink enormous amounts of fluid -- about 5 litres a day of mostly water, or skim milk mixed with water. I can't drink sports drinks because I am highly intolerant to many additives -- both artificial and 'natural.' Plus I have problems with colourings too, big time. Because my bp is now high I don't salt load -- it was never great for me to begin with -- but I make sure I have some salt everyday. If I miss a day with salt I always feel worse. Whenever I have salt loaded in the past (before my bp started to read high a lot of the time)it would make my migraines worse. I walk a fine line with salt and migraines/pots generally, I find. Anyway, back to sweating: After 6 years of not sweating noticeably I started to sweat. I was cleaning the kitchen floor one day and I noticed beads of it on my upper lip. I got so excited, LOL. And then my ability to sweat came back over the next few months and I was back to being a profuse sweater. Now I switch between becoming overheated and sweating too much, to becoming overheated (even when it's cool to cold) and not sweating at all or only a little. 'Strange days, indeed.' I was diagnosed with erythromelalgia and POTS by a vascular diagnostician. A very, very bright doctor. Bless him. But treatment of the burning, hot skin stuff got caught up in my treatment of allergies and food/chemical intolerances. I'm now allergic to a lot of stuff. Experienced anaphylaxis to aspirin and to something else we aren't sure of. Have 'milder' allergies -- skin rashes and flushing with swelling -- to other things. This is, at the moment, the symptom that I tend to worry about. And I always have hives somewhere on my face or neck or arms. Somehow or other I think I've gotten onto the wrong track when it comes to these feeling of heat etc -- I was treating as though it was urticaria, something I also have, under the guidance of my allergist. I need to revisit the vascular diagnostician to seek treatment for erythromelalgia and see if this is causing the problem or if it's a pots thing. Erythromelalgia (which I do have) has much in common with my overheating but it's symptoms are a little different. However, with quite a bit of research I've done lately on it, although I don't fit the 'strict' feet and hands only description of erythromelalagia when I dug a little deeper I found it effects other parts of the body. There is a bit of info on the net -- here and there -- that connects erythromelalgia to mast cell problems and pots in some people. I've just started to come across it -- 8 years ago when I was diagnosed with both erythromelalgia and POTS and problems with histamine release, there was nothing on the net that I could find that connected them all. I couldn't find anyone that had all three problems. And I stopped searching for connections. In my head I needed there to be a connection. I could not accept that I could have all three problems at the same time that started around the same time. Anyway, I know enough to be confused. LOL So it's time I went back to see my POTS doc and talk more about erythromelalgia, pots, too much histamine release . Rather than just talking strictly 'pots' with him and thinking I needed to talk 'skin problems' with my allergist. I did bring it up with my neurologist but he just shrugged and told me it was probably a nerve problem and gave me a script for gabapentin. Which was actually one of the treatments for erythromelalgia (as well as other nerve pains) but makes my severe constipation -- a pots problem -- so much worse. GRRR. Thanks again, blue

Hi, First off it's nearly officially winter in Sydney, Australia although you wouldn't know it from the weather as it's been much warmer than it should be, but still cool with some cold early mornings. At these sorts of temps I usually do okay body-heat-wise. Not as badly as I do during a hot summer. But I am experiencing feeling overheated most of the time. Although a nuisance it's easier to cool myself down during the day. But at night it's a real problem. I go to sleep under a sheet and light throw -- something you'd normally use on a sofa. Its light and much cooler and smaller than a blanket. The window is open letting in the cool/sometimes cold night air. Only sometimes I can't tell it's cool. Because I'm feeling so hot. Usually I go to sleep feeling just a bit warm. I've been feeling just a 'bit too warm' for past 4 years. But now I wake repeatedly during the night feeling hot inside my body and head like I have a fever. I have to get up and get something to drink, sometimes have a cool shower, and then get back into bed lying on top of the bedclothes with the window still open and the fan on. (To complicate matters, although my face will feel too warm too I can't let the fan blow directly on my face because it will feel begin to feel painfully too cool and start to ache -- unlike my body which rarely feels too cooled by the fan). When I feel cooled I can go back to sleep and just pull the light covering over me. I go back to sleep feeling like I usually do when I go to sleep at the beginning of the night. Only to wake and hour or two later feeling very overheated. I go through the whole routine of cooling down again, to fall asleep and then wake feeling very overheated. I wake with tachy often, too. But not always. The only time I don't wake feeling hot is when I wake with migraine - I've got breakthrough migraine pain, pretty mild for me, at the moment and I don't feel hot. Sometimes I wake feeling hot, sometimes it takes a few moments for the overheated sensation to start. I do have erythromelalgia -- hot burning skin sore to touch -- but I'm not sure if it's that, or POTS tendency to over heat due to dysregulation. I haven't really found any articles on the net yet in regards to pots and this feeling, and I'm just wondering what is causing it. It's actually a problem I've had occasionally for the past 12 years but in the past 6 months has been a constant. I believe an adverse reaction to a medication about 6 months ago has made this symptom stronger. But it was the middle of summer then and I figured that it was just generally hot and my potsie body wasn't handling it. But now it's cool at night and getting colder and my feeling way too hot is persisting. sorry for long post, blue

I also used to wake up with a 'dead' arm and have to use the other arm to lift it, so I could move it around and get movement back into it. It felt just like my arm had 'gone to sleep' as though I'd been lying on it but I was not. It wasn't until I read your posts -- freaked and bsmith -- that I remembered this used to happen to me. I'd forgotten about it. Yet it wasn't that long ago when it was happening to me........... I've got other sleeping issues now that are bothering me... blue

Thanks Corrina, I noticed it yesterday afternoon. I think it's there more than I realize. Perhaps it's one of those bodily things that happen to everyone but I am just super-sensitive to any bodily sensations now. Hypervigilant is possibly the most suitable word. The swishing is not happening now. Anyway, I'm confident my gp and I will sort this out. Oh, oh, did I say 'confident.? LOL. I'm hardly confident of anything anymore -- a 'side effect' of pots for me has been loss of confidence. blue

I get severe abdominal pain and have bad constipation. My gastroentorolgist (who has made it his business to know a bit about POTS and it's effects on the enteric system) has told me on a few occasions that abdominal pain is common in people with POTS. No answers as to why, just the observation. I get the sweats when I get the abdominal pain too. Sometimes it comes with sitting awkwardly. Sitting in a car brings it on, a lot of the time. But it will usually ease with standing and moving around. I used to have to lie down in the fetal position and wait an hour until it passed but now, for some reason, moving around helps it. I notice I get really irritable and frustrated when I experience the pain. But who wouldn't after years of it? I've had nearly all the tests. Colonoscopy, endoscopy, how quickly my small colon empties (slowly) etc. I didn't have a test for gastroparesis although I could have if I wanted. When I asked the gastroenterologist I was seeingat the time, did he think I could have gastroparesis?, he said yes, but that I could be tested for it if I wanted. Because he was of the opinion that I did have it, and because I just couldn't face or afford another test at the time, I decided his opinion was good enough for me. Sorry I can't give you an answer. Just my gi's observation that abdominal pain is common in POTS. I hope you find and answer and it you do, could you share it. Please. blue

Hi, If you are on meds, one of them could be a possible cause. One med I was taking for another health problem did something very similar to me. It didn't went I first started it but after a while it caused the problem. I did not realize the connection until I had to come off the med -- due to other side effects -- when the frequency dropped back to normal. I'm predisposed to it happening, occasionally, without meds and figured it was either a sleep apnea problem (I have positional sleep apnea), or a pots/anxiety thing. The med just made it occur more often. Often more than once a night. I've trialled a lot of meds and many of them impact negatively on my sleep, I've found. Things like anti-histamines, anti-depressants etc. blue

Thank you people. My gp's office is right next door to where I live. He's just moved here from his old practice in the city. Yay for me. So he's monitoring my bp. I used to have a bp machine and was tracking it and it was mostly 'normal' which indicates I do have 'white coat syndrome' -- see a doc and bp goes up -- but it was also effective at measuring my pulse rate. I took my bp machine recently to check it against my doctor's one and it was working perfectly and then I dropped it on the tiles of my front door bringing it home. LOL. I really do blame POTS for being clumsy. I think the swishing, swooshing is probably blood pressure. It hasn't happened today. Knock on wood. blue

I have my basic symptoms that are always present. Sometimes strongly, sometimes not so much. At the moment I increased problems with it's tachycardia -- getting a lot of it on the slightest exertion, standing up of course, but when reclining on the sofa or in bed. Sometimes anxiety triggers tachy or maybe it's the tachy making me feel anxious. I have just experienced a week of no sweating but feeling overheated (and it's cool -- nearly winter -- in Australia). Before this I was sweating like a racehorse, exertion bought it on, just standing too, but often I'd find myself lying reclined on the sofa and I'd break out sweating. It happened in bed too, awake or asleep. As symptoms seem to chop and change, over the past couple of days I'm wondering if I've gone back to 'no sweating' instead of excessive sweating. I had 'no sweating' for about 6 years, followed by excessive sweating for 4 years. I haven't been drinking excessive amounts of fluid in the past week, haven't felt nearly as thirsty and I think a logical guess is because I've stopped sweating so much. I also have erythrmelalgia (EM) and it's been hammering me this past 5 and half months. Before this I went through a period where it wasn't so bad. I have other symptoms that wax and wane. My constipation is pretty bad but sometimes, quite regularly everything stops completely and I get into a really bad way. Then constipation will lessen a bit and I'll be a bit more comfortable. When constipation as a symptom first started about 9 years ago I did not have a bowel movement without taking heavy duty amounts of magnesium sulphate or the preps they give you for colonoscopies. I dread that state coming back and whenever my bowels stop I fear this time in my life will repeat itself. Some symptoms eg like chest pain have almost ceased, I rarely get chest pain (like heart pain) now. Knock on wood. I got used to it but it was disconcerting. Gut pain is absent at the moment but it always returns. It's hard to get a handle on this. There is no knowing what symptom is going to be in the 'ascendancy' from one day to the next. I hate the relentlessness of it.

Thanks Alicia, The dental appointment was fine. I didn't need a local anaesthetic so I was pretty calm in the end. I do have to have a local in about a month's time to fill a hole in my tooth -- dentist said it would hurt too much without it. I'm dreading it because I'm reacting to locals. I have erythromelalgia (EM)which is red hot burning skin and locals will cause a flare of it, now. This reaction to locals started just over a year ago. But I'm also allergic to zylocaine cream (anaphylactic reaction) that is from the same family as local anaesthetics so it freaks me out that I may be heading towards developing a serious allergic response. I'm what they'd call 'intolerant' to locals now, but not 'allergic' or something like that. Migraine is a bugger. I have genetic disposition to it and it's also POTS related. When POTS hit me hard my migraines increased in frequency and severity. I really do feel for you.

Thanks Lewis, I will blue

Hi Alicia, I took myself off to to consult with my gp this morning. I get high blood pressure at times and he's monitoring it. It was high today -- the highest he's seen it -- but I am stressing over a dental appointment I have this afternoon and I have been highly anxious. So he asked me to come in next week to check it again. It could be that my bp has moved into the high levels permanently or it might be the stress about dental work and other personal stuff or just having a whole lot of pots symptoms cascading at the moment. Or it might be 'white coat' syndrome -- I just see a doctor and my bp shoots up. It might still be migraine causing it. Not sure about the tinnitus. I do get ringing in my ears much more often now but I'm getting older, it runs in my family, some pots patients experience it I've found out etc. I"ve never worried about the tinnitus. It could be a form of tinnitus. At any rate, my GP is monitoring it now. thank you, blue

Over the past month or so I've experienced episodes of 'swishing' in my head. It feels exactly like it sounds - like a 'swhish, swhish.' Not pounding like a migraine. I think it's my heartbeat but I'm feeling and hearing it in my head. When I have a migraine I can often feel the pounding in my head in time to my heartbeat. But this is different. No head pain but this freaking swishing. It might be a form of migraine. It happens when I'm at rest, so far. When I'm lying down, semi reclined. Or sitting up a bit more. I've been thinking it's just another one of those 'things' that the body does but that I can be oversensitized to and become consciously aware of. blue

Anywhere from 3 to 5 minutes after I get into bed most nights I have an 'anxiety attack.' Heart rate increases, body feels like it's vibrating/inner restlessness (hard to explain the feeling but it's a symptom of an adrenalin rush) and I get anxious. Getting up and taking a few steps stops it immediately, I figure I'm using up the adrenalin by expending energy). If I stay lying there it will last a couple of minutes (not sure of time frame but it feels like a couple of minutes) and then die down. Then I go to sleep. It doesn't happen every night but it happens most nights. On the nights I remember, as I'm getting into bed, that it's probably going to happen it doesn't catch me unawares and I feel a bit less anxious, but still v. uncomfortable. On the nights I don't remember to expect it, I feel much more anxious when it happens. It's an unpleasant feeling. Way back when (pre pots diagnosis) docs told me it was panic attack. But it's obviously not, as far as I'm concerned. It's a weird thing my body does as it's relaxing. It can happen in the daytime too when I start to doze off on the couch. And it can happen when I wake during the night and need to get back to sleep. Between this feeling and the body jerking (increased myoclonus maybe) that I've experienced lately it makes getting to sleep a journey, that's for sure. Both 'anxiety attack' or body jerking can happen if I happen to doze off on the sofa during the day. If it's day time I'll usually think, stuff this, and get up/sit up and go on about what I was doing before getting sleepy rather than trying to relax enough to doze off again. It's double whammy when, as I'm going to sleep, I get the anxiety/adrenalin rush, get over that. Then find myself relaxed again, and increased myoclonus jerking kicks in. Then I'm fully awake -- again. And just exhausted. blue

Hi, I do have anxiety issues. What came first -- pots or anxiety -- no-one would be able to work out. I was labelled years ago as having panic disorder. So I did a cbt course run by a major hospital and the result was that for nearly 2 decades I learned to 'challenge' my symptoms of anxiety which were really symptoms of undiagnosed pots. I ended up tired and dispirited and also very ashamed that despite all my hard work each day I could not get rid of the 'panic disorder.' Then the symptoms the docs could see started to show up and finally I was diagnosed with pots. But the years of misdiagnosis of panic disorder had done some real damage. I no longer trust my instincts and question myself quite a lot. I no longer trust my own judgement when it comes to 'am I sick today?' 'how sick am I?Sometimes, 'am I sick enough to need to go to Emergency?' Last time I went to emergency was about 5 plus years ago (bit hazy about exact timing) I was sent there by my GP. Years earlier I would have known that I needed hospital care but that had changed. I turned up at emergency experiencing non-immune anaphylaxis. Now, I might have been okay, in the end, if I'd stayed home but this is anaphylaxis and I may very well not have been okay. But the rule of thumb is if you are experiencing a strong allergic response go to freaking hospital. I had lost confidence in my ability to know what was truly something that needed to be treated. I received treatment -- twice -- after the first round of treatment they had a good look at me and told me I'd probably be fine to go home in a couple of hours, I looked and felt okay. Towards the end of the next two hours the anaphylaxis repeated itself and I needed a second lot of treatment. I just thank heavens that I went to the doctor. And part of the reason I went to the doctor and didn't stay home worrying about it was that my husband came home and saw me and observed what was happening to me for all of 5 minutes and said he was taking me to the doctor. I was shocked. He's not easily ruffled by medical things. I guess what I'm trying to say is that the misdiagnoses of 'panic disorder' sent me down the wrong road of treatment and now it has really stuffed with my ability to know 'is this serious or not?' which can leave me in a very anxious place for a lot of the time. So yes, I do have a lot of anxiety but it comes WITH pots. flight or fight response -- sympathetic nervous system etc. etc. I do have a psychiatrist and about 6 years ago -- 2 years after my pots and erythromelalgia diagnosis -- I rang him and asked him if he thought I had a somatoform disorder. Was I a hypochondriac? Had I worked myself into such a state with anxiety that I'd manifested the symptoms of a physical illness? He asked for a few days to think about it. He rang me back a few days later and told me that it was his opinion that I did not have a somatoform disaster (btw, I think they've changed the name of 'somatoform 'to something else in the latest edition of the psychiatric manual) and that I had pots and other stuff but that I was understandably anxious and depressed about it. That being said, I've decided to seek out the help of a psychologist who works with people with chronic illnesses. I need to work on feelings of anxiety that surrounds being ill, I need to work on the sense of shame I feel, and I need to work on the feeling that often I feel like a helpless hostage to this illness. In other words I need to get my happy back and work out how I deal with the anxiety, and subsequent depression that has come from being unwell for so long. blue

I've forgotten how to do simple things I do nearly every day on the computer. I'm sure someone has changed my keyboard. LOL. Brain fog is bad today. blue

Best of luck, Anna Banana. Can you take a fan with you? To sit in front of if when you have breaks in your performance? Sitting when you can, keeping hydrated, and if heat's a problem a fan could help. How exciting! Blue

And once there was no POTS -- it was anxiety. And once there was no diabetes -- it was anxiety. And once there was no asthma -- it was anxiety. I'm sure a historian of medicine could add to the list of 'and one there was no....' To those doctors who told me it was anxiety at first I believed you. Now I'd like to say to them 'Fool. Who wouldn't be anxious having an illness that no one can fix but causes such physiological and psychological distress?' blue

I went gluten free for 3 months years ago (well before diagnosis) to see if it would help me in anyway. I saw no change. However, I ate oats (in form of porridge). Then it was fine to eat oats on gluten free but have read conflicting info about it. To gluten free people, are rolled oats in or out of a gluten diet? ta, blue

Well, I'm urinating a bit better now. So whatever it is/was, it seems to be correcting itself. If only my constipation (9 years and still a problem but I'm still here) would do the same. blue

Hi Tammy Kay, I've heard it said that the rescued animals are the best. They really appreciate their new life. Having experienced often terrible conditons before rescue. And Kitt, Thanks for posting the links to the dog. I came over a little weepy when I saw it. And I'm not a weeper believe me. A story with a really good ending. Makes me want a dog again right now. But I have to wait until I'm in a house again so I can cope with the responsibilities of being a dog owner. blue

Hi Gemma, Maybe you should start a new topic with your post. Anxiety about new meds is common to us all. I think this would generate some discussion of SSRIs but also about the anxiety about how we feel when starting new things. Will it make us better? Will it make us worse? How hard it is to start a new med when it serves us up a side effect we've had before on another med? I can relate to stopping meds because they caused something to happen to my body that I did not like, feared it would make me worse and deciding I would try it later, if necessary. In my case, this was not always a good idea. But we are all different. I do think your post deserves a topic of its own. I think this problem may be common to many of us. But I'm too brain foggy to write a coherent response to you today. I've attempted to do it three times now but have not been able to. And I don't want to see your post get lost with only a couple of responses because as I said, (repeating myself here with brain fog), I think many of us feel similarly when it comes to starting new meds. Especially those of us with chemical sensitivies. Posting this whether it makes sense or not. Not even going to reread it to find my mistakes. blue

I was looking through the forum for urinary retention. And found quite a few posts on it. Since Friday morning (Sydney, Australia time) I've been finding it hard to urinate. No stinging or pain. Just not going much and when I do it's a weak stream. It's now Sunday early Sunday morning and none of the usual getting up to pee like a race horse in the middle of the night, or first thing in the morning. I'm one of those people who usually can't hold onto fluids and pee them out frequently. I did take zyrtec and zantac on Friday morning. I was off to the dentist and was wary of allergic reaction if he did any work. So I did this as a precaution. I can remember one of these meds has caused me urinary retention before ( can't remember which one) but only for a half day or so. Nearly 48 hours of this is driving me crazy. As much as I hate the need to urinate frequently, not urinating enough is worse. Any one experience urinary retention because of zyrtec or zantac? The should have left my body by now, anyway. I'm also constipated. Always am to a lesser or greater degree. Am wondering if my bowel is full and pressing against my bladder somehow and causing my bladder to be partially blocked or something? Was going to try and treat the constipation with a fleet enema (not always successful) but was worried that the slight dehydration it causes would make the urinary problem worse. But am definitely going to try doing it in a couple of hours if my bladder flow has not returned to 'normal.' blue

Hi linnie and lejones, I think the last time I was in ER was when I had an non-immune anaphylasis episode. I was seen straight away and this was some 5 years ago. I haven't seen them commence treatment in ER. Maybe it's something relatively new. or maybe a hospital was running a trial on how best to treat patients. It's always been my experience that once you made it from the waiting room into the actual emergency rooms you get treated straight away. Treatment might come in dribs and drabs, see a doc, then see a nurse then wait then see a doc etc. That's been my experience anyway. You are so right lejones about docs in their rooms not taking vitals. I'm 58 and when I was younger that was the first thing that a doc did. Temp. blood pressure. heart rate. ears and reflexes and eyes. But something strange has happened with our gps over the years and sometimes you have to ask with some just to get a bp reading -- forget the rest. I now have a gp who takes my bp and pulse without me having to request it. But I wonder how they can really judge how you are doing if they don't do the whole routine they used to do . That's how a lot of stuff gets picked up. My now deceased dog had a vet that used to do all the vitals and observations on her. Every time I took her to the vet she was thoroughly checked. LOL. I have a number of specialists and only ONE does the vitals and reflex test every time. He's the doc who diagnosed me with pots and erythromelalgia. Emergency is 'free' -- covered by the medicare levy Australians pay each week from their wages in the form of a 'levy.' I think the health care system is a lot cheaper in countries like England and France and Italy. My sister lives in Italy and she not only does not pay for health care, her meds come free too. Lynnie , glad to hear you have an appt. with a doc about your vision. blue