blueskies

Yes, it's total bull that 'no patient has symptoms sitting.... it stops.' Like ****, it gets worse. Many people with pots sit in chairs with their legs crossed under their bums -- the semi lotus position. I have a desktop computer at the moment and eventually I go potsy if I stay on it too long. Keeping my feet up means I get a longer time on the computer but eventually I go foggy, flush, feel sick and get tachy, and it can often bring on my gut pain.

Me too, very bad for me. Ashelton, I don't suppose you kept the link the bit about absorbing 12 times their weight in fluid? And when you said 'major gastric issues' did you mean pain, diarrhea or constipation? You said you were losing 'tons of fluid.' Was that through urinating and/or diahhrea? One of my major symptoms are gastro problems -- of the constipation type - so hence the rather explicit questions.

Mostly I feel better for the day when I excercise. Sometimes not though. For example about 2 weeks ago I had an almost brisk evening walk. I felt wonderful when I was out walking. Next morning I woke up with migraine from **** that lasted 3 days. Sometimes I feel that the days that doing exercise is harder are the days that I feel good afterwards. Weird. I used to swim for exercise but now due to arm and back injury I can't do laps. Up until that time swimming was a perfect exercise for me. So, I have to walk. Walking has always had it's problems but I persisted until pots hit hard about 9 years ago. when I was diagnosed with POTS I had not walked for exercise for about 4 years because I could barely stand up let alone walk without someone to lean on. I can still have a orthostatic episode when out walking but it doesn't happen to often. That's why I walk in the evening. So I can ring hubby on the mobile -- he's on fast dial and if I've fallen or gotten sick and had to sit or lie down he can come and get me in the car. This rarely happens now though but it will set me back for a month or so when it does happen. I've realized that I can't exercise at anyone's rate but my own that's why I walk alone. I have to set my own pace. Even when out shopping or something. Whoever is with me will have to be prepared to walk at my pace. They work this out if they are faster walkers than me because I'll be 20 feet behind them..

I had bouts of this pain, lying in the fetal position on the floor, for about 4 years. And then the severity went away. I still get the same pain but it's much much milder, although it lasts longer. The old pain used to last about an hour. This pain can last about 4 hours and will wake me up when it happens at night I can't sleep until it settles but I can certainly bear it and no more lying in fetal position sweating like crazy and gritting my teeth. I had a colonoscopy, endoscopy, and a couple of other tests but nothing came up that would explain the pain. I did have my gall bladder out after I'd had the pain for a while. That specialist said definately caused by gall bladder. They took out my gall bladder, which apparently was full of stones, but 2 hours after going back to the hospital room from recovery I was in the fetal position with the same old pain. I felt like an idiot. And a poorer one at that. Anyway, with some luck that intensity of pain is gone for good. I can bear the lesser one.

I was hoping that our move to our new apartment two years ago would make life easier for me as it was much more central to eveything and life was difficult because I odn't have a car to get places. But it's incredibly noisy -- traffic, people etc and I'm really starting to feel strung out in the potsie-tired-but-wired way. I spend a lot of time feeling like the noise is actually painful. (It's definately painful when I have a migraine too, but I"m talking about that sensitivity to noise some potsies have which feels painful). After 2 years here I have decided we have to move. I'm just trying to get up the energy to rent out our apartment, look for a new one for us to rent and do the actual move.

Macks Mum and anaphylaxing, could you please tell me how your mcas/mcad manifests. And how do you deal with those symptoms. Thank you, blue

Katybug, you mentioned you had a lot of inflammation? So do I, of the skin. Can you please share with me what you meant by inflammaton? blue

Hannah, I'm sorry to hear you are getting repeated infections I'm one of those potsies that rarely picks up anything even though I'm around my little grandsons who are always catching stuff at kindergarden. Knock on wood. Maybe, it's an age thing. Perhaps I caught most of the viruses etc, when I was young. I hope they sort this out for your soon.

Hi all, I have a recurring urinary tract infection and I can't handle antibiotics. I've had such bad reactions to the ones I've taken over the past 9 years or so that I don't ever want to take them again if I can help it. But I don't know what to do about the uti. I can't drink cranberry juice as it's high in salicylates and my skin reacts to salicylates. I"ve been drinking a heap of water (but I do anyway, with pots) but there is not much else I know to do. Just keep on drinkng the water and hope it goes away????? If I see my general practioner I know she'll want to prescribe anti-biotics so there is no point even seeing her. She's not at my place when I react very badly. I'm sure she thinks I'm exaggerating. I see my allergist/immunologist in mid March and I'm hoping she can come up with something. I'm also hoping the uti doesn't get any worse until then Any ideas? blue

I was never able to drink. I used to get the 'hangover' before I got the 'drunk,' Last few times I tried to have just a little bit was like, 17 years ago, and I got almost instant migraine every time. I believe I still would get migraine. Just the thought of it makes me what to throw up....

Shoegal, It sounds like you need a new gastroentorologist. And as Chris said, an autonomic specialist. I have what sounds exactly like your bowel problem most of the time (say 98% of the time). Absolutely no bowel movements without very strong laxatives and those laxatives cause other problems. After years of dealing with this problem I have now found a gastroentorologist who understands quite a bit about POTS (he was recommended by my pots doc because of this) who is being very helpful and supportive in trying to help sort this problem out with me. I think you need to get better doctors.

Emma, I totally agree with Jangle. You might need to be tested. It seems to me that people with POTS (possibly most forms of dys, I don't know) have more chance of having sleep apnea. And if you do have it, proper treatment can mean some real improvement in how you feel. I can't use my cpap at the moment because of chronic urticaria -- pressure urticaria is especially a real problem for me currently - but once I and the docs have found a way to get this under control I'll be straight back on my cpap. That way I know I'm treating it as well as I can. I"m not sure how it works in the U.S. but here in Australia the big hospitals seem to have sleep clinics. And for any Aussies that may be reading this, the tests can be done publically and cost you nothing but there will be a longer waiting time - just get a referral from your gp. I had private health insurance at the time so I was able to be tested the following week with no out of pocket expenses (which is unusal in Australia, we nearly always have to pay extra with private insurance). It might interest some - at my initial appointment with the sleep specialist he was of the opinion that I most probably did not have sleep apnea. But he felt it best that I have a sleep study 'just in case' because I had POTS - plus I was insisting pretty fiercly that I be tested. I had the sleep study and at my next appointment with him, he was most surprised he said, that upon reading my results, to find that I reached severe levels of apnea during certain stages of sleep.

s-pot, I agree with the mother/fetus connection. I had two potsy but okay pregnancies which resulted in pretty stable (emotionally, I'm talking) children. My third one was was so different. Distressed all the time because of hubby's behaviour. Then going on to develop post-natal depression which actually BEGAN at the beginning of the third trimester and ended when bub was 9 months old. For the first 6 months of that pregnancy that baby was subjected to a lot of stress hormones. But the depression I suffered during the last six months of that pregnancy was huge and I know it effected him. Baby was born super alert (unlike the other two who were sleepy little things) I swear, this baby hardly ever slept and would only go to sleep lying on my chest listening to my heart beat. Nurses said that they'd never seen any baby so wide awake and restless. He grew up to be a lovely young man but has many anxieties which he has learned to alleviate by being always busy, very physical until he tires his body enough so he can sleep at night. I have no doubt, it was the stress I was subjected to during that pregnacy, and therefore the stress he was subjected to, that made him a more stressed out, hyper active human being. blue..... I will argue that one till I'm blue in the face, no matter what any doc says.

This is something I often do to get to sleep on an anxious night. First of all I climb into bed and notice deliberately how comfortable the bed is and how soft and smooth the sheets are, how fluffy the pillow is etc. as I lie there. I luxuriate in the bed. I will get a bit of tachy nearly each night somewhere in the first 5 minutes of lying down and what causes this I have no idea. But it passes so I no longer get anxious about it. I don't like it but I accept that it happens. Then I make sure I'm lying on side (helps my sleep apnea) but not everyone has to do this, anyway, I lay with eyes closed and count slowly back from a hundred on each 'in breath' and on each 'out breath' I say in my head "relax." Many nights I go to sleep before I finish the cycle of 100 breaths. Don't panic if you lose your place (what count you are down to). I often do that. I just either start again or make a guess at where I was up to and carrry on. This will work for anxiety or stress through the day (although I've been bad neglecting daytime relaxation/meditation for ages and intend to begin disciplining myself to do it again each day as well because I know it works to improve my general whole body mind health, and by neglecting and not making time to do it I'm just making life harder for myself -- I have a daughters wedding coming up soon and the demands on me are going to be huge so I have to face it as calmly as I can and this meditation/relaxation will help me). I can't meditate or relax in the morning (as many instructors tell you to) because I will fall back to sleep again.

Hi Jangle, Are you posting to me? If so thankyou for your response. I have tried to sleep every which way. Problem is that unless I have something that will physically stop me rolling onto my back, as soon as I go into deep sleep I slide down and onto my back. You'd think the body would register it was 'bad' for it to sleep that way and just naturally sleep another way. But it doesn't. Unless it's pain. I was naturally lying on my side before I had my back surgery last year because if I rolled over onto my back the pain prompted me to get back straight on my side straight away.

Dear puppylove, I really do feel for you. I was diagnosed 5 years ago with POTS (although I've had symptoms -- less severe -- for much longer). At first it was a relief for me to be able to tell my family that I had a 'real' illness. They were all convinced it was in my head until then. But, except for one, my family -- parents, 3 sisters, husband and 3 adult kids never did come to have any understanding of it at all. They see me on my good days and assume that if I just push myself on my bad days I should be okay. But one of my sisters has been a tremendous support for me. She will drive me places occasionally. But mainly her support has been talking to her about the difficulties of living with pots. She's been very good at listening. And I try very hard to return the favour and listen to her about her life problems. I also have a psychiatrist I see fairly regularly and he helps me 'see straight.' He's really good at making me realize when I'm beating myself up and engaging in what he (and my pain specialist) call 'magical thinking' -- I tend to start to think that my symptoms aren't that bad and then beat myself up because I feel like a failure because I feel like I'm over-reacting. My psychiatrist is very good at reminding me that he's seen me fall down, suddenly and without any warning (that was before I learned my warning signs). My pain specialist has been very good in insisting that my pain is very real and that I not try to ignore it but rather take the pain meds he prescribes, so that I don't end up in more severe pain. So, I have two people in my life who help me stay sane with this thing and stop me feeling like a failure and, especially through talking with my psychiatrist, learning how to say no to people asking me to do stuff when I just can't without me feeling guilty. Or even worse, pushing myself to do things with/for them because I didn't want to disappoint them and paying for it big time later.

Thanks Issie, I appreciate your imput. I should have been a bit clearer. When lying on my side I very have low levels of apnea -- we know that from the test. it's when I roll over that I go from low level to moderate and then to severe -- so I know I get 'good enough' sleep on my side. Not as good as I used to get with the full mask cpap. I've tried every mask available. It was part of the service through the clinic. You didn't have to buy one until you'd tried out each mask to find out what was the most comfortable. I chose the full facial mask because I'm a full on mouth breather and a nasal mask just did not work for me, as the technician noted the second night of the sleep test, where they find out what pressure you need and also try to work out which mask fits best. Plus I found the nasal mask to be really uncomfortable, anyway. As you'd know, what works for some does not work for others. It takes very little pressure for me to get the deep red lines of pressure urticaria. The tennis balls sticking in side of my back that do effectively work at keeping me on my side do cause those marks and soreness but as it's my back, and a bit less sensitive the soreness goes away not long afer I get up. The redness lasts a bit longer. As I said though, I do appreciate your imput. Especially as someone could have thought it their apnea would be okay if they just slept on their sides, which as you said, is not true for everyone with sleep apnea.

Brethor9, Can you detail one of those episodes, please. I thought I might have been in anaphylatic shock -- and kept my epi-pen right next to me. Although if it had gotten worse I don't think I would have been able to manage to jab myself with the pen. And in the back of my head I was thinking if this isn't analphylactic but pots related instead then the last thing I needed was more adrenalin in the form of epinephrine. But so far the three different docs haven't heard of an allergic response like that. So I have put it down to a 'pots thing.' As those docs were inclined to do.

Chronic Daily Migraine. I can get severe breakthrough migraine that lasts for days and it's definately the worst thing for me.

Sue, I can get a slow anxious feeling come on that then becomes a feeling of dread. In most cases the feeling just passes but sometimes it means I'm getting a severe migraine. Last November I had the feeling but it went onto develope into an hour and half of me vomiting until I was finally able to stop then I spent 2 hours freezing cold -- on a warm night ( it was late spring here in Australia). I was so cold I was shaking so hard I'd call it juddering. I had every blanket that we owned piled on top of me. It took me two hours for that to settle down and then I went back to my more usual feeling of feeling overheated. About 2 hours before the anxious feeling started I had taken one tablet of an antibiotic (one that I'd taken some months before that I'd been able to tolerate even though it caused me to feel a bit nauseated). I'm not sure if I had a bad reaction to that tablet or not (no doctor has yet been able to confirm or deny this other than to say that with dys. it could have been 'anything.'. I'm seeing my allergist in March and hopefully she will be able to shed some light on this weird reaction. If it was a reaction to the pill. If she thinks not, I guess I'll have to see my pots doc to ask him -- I'm more than due to see him again anyway. I've told a neurologist, a gi doc and my gp about this episode at appointments I"ve had with them to talk about other things and none of them could come up with more than a bemused shrug. I honestly thought that maybe I was being to casual about the reaction when it was happening (by not ringing an ambulance) but the reaction did stop. And as I said, I felt fine as soon as it did. It was so mysterious. Sometimes there are just no answers, I've found.

Naomi, this is a problem I have at the moment so I'll be interested in suggestions too. I used to be able to fly better than be a passenger on a long drive. Now it's the other way around. Last 2 flights were hard but I made it. When I got off the plane last time I had to sit on the ground in the airport for quite a while. I looked pretty strange but I've had to do stranger things. I have to attend my daughter's wedding in April -- and it's either a 1 and half hour flight or a 10 hour drive. Hubby will not do the drive no matter if I drive or he does. I'm going to have to grit my teeth and cross my fingers that I get through the flight okay. I swear I'd be a better flyer if I had room to put my legs up. Sitting in the normal way with legs down is very tachy, OI, brain fog inducing for me. That's why I eat semi-reclined on the lounge, mostly. My feet are always elevated when I'm sitting at home. Oh, and for some reason I hyperventilate on a plane. Not from anxiety. It just starts to happen. Not sure why? One thing about flying that makes it a little easier is for me to get a window seat. For some reason if I can see the ground I tend to keep my balance better. Only last night I found myself starting to dread the thought of going to my own daughters wedding.Then I just gave into it and accepted that I will be going, that I want to go, and however my body decides to respond I will deal with it at the time. Starting today I'm doing lots of meditating in the run up to going to this event. I figure if I am going to do it I am going to try and do it as calmly as possibly -- that has got to be a help!

I always used to read low in a doctor's surgery or in a hospital. Then suddenly it started to swing high each time I visited the doctor (a general practicioner) to the point that she put me on bp medication. After about a year, and blaming every other thing except that med I realized that it was probably causing me to sweat even more than I now do and feel a bit 'off.' I took myself off the bp med (I know I should have seen a doc first but if I saw a doc about everything I'd be seeing one every day) and started monitoring my bp at home. It was normal nearly every time, with only the occasional swing to high. I saw that gp and showed her my record of readings and she said I didn't need bp medication. It seems I had suddenly, a few years ago, during a very stressful time, developed 'white coat syndrome' but mine only applies to doctors. Whenever a nurse takes it it's fine. Crazy, i know. I was in hospital last year and every reading was lower than normal. Each morning I get up and take my bp and it's good. But my pulse rate is nearly always over that 30 beats extra. As the day wears on my pr comes down, usually. Unless I'm standing still or sitting with my feet down for too long.

I have moderate to severe sleep apnea. I was using a cpap machine successfully for a while and felt so much better. But unfortunately my pressure urticaria (have several types of urticaria) flared up and has not settled down and I find wearing the cpap machine really painful -- leaving deep red painful lines where the mask suctions onto my face. Now I sleep with a t-shirt with a sock tied to the back full of tennis balls. It stops me rolling onto my back (that's when my sleep apnea gets worse) and keeps me on my side (I'd be getting low levels of sleep apnea, then). I've only recently been able to resume wearing the t-shirt as I had a back operation last year and was advised by the neurosurgeon who did it to lay off wearing the tennis balls t-shirt until I was sure it would not hurt my back. While i wasn't using anything to keep me from rolling onto my back I was getting dreadful sleep. I wake every couple of hours anyway but without anything to stop the apneas I was hardly sleeping at all and had become very foggy and became accident prone. I've heard of one woman who also can't handle a cpap and she sleeps with a backpack on her back stuffed full of something -- I forget what. She needs that much bulk underneath her to stop her rolling onto her back during sleep. From everything I've read you need to have a thorough test done at a very good clinic. I was lucky as there was a sleep clinic in the hospital where most of my doctors practice and the 'sleep doc' is well regarded as is his sleep labs and technicians. The whole set up is very professional. I've heard of sleep clinics that are just not that good.

Hi Katybug, Glad to here that you have seen some improvement on prednisone. I use it for allergies and for my when my skin on my face goes red, burns and swells. It always works for the allergies, but only works sporadically for facial redness/swelling. My sister in law has been on prednisone for 17 years now. It saved her life (she has sarcoidosis, not dys) and she has a very active life -- travels, looks after grandkids etc. but does rest for weeks in between. She's learned how to pace herself. There was no going back to work for her. But she has suffered some of the harsh side effects -- lot of weight gain, crumbling teeth -- but it's either dead or take the prednisone in her case. It also got rid of her regular migraines from day one which was a bonus. Without prednisone she would have been dead at 50 very probably. She's lived 17 more years and has lived them pretty well and it looks like she will live to a ripe old age. Personally I can't handle the side effects enough to take it on a regular basis. I just use it as needed. Short, usually 5 day doses, decreasing down to none on the sixth day. It causes me to have more sleeplessness (already a problem for me) and I get very jittery and develop a headache that can't be treated. About the 4th day I have a voracious appetite. I've spoken to my sister in law about these things and she tells me that she had these problems but that she has adapted. She can sleep well and the anxiety/jitteriness is gone. Not the voracious appetite. She was started on a dose of 50mgs a day but over the years has been able to bring the dosage down to 2mgs a day.

Yes, for me the compression qualities of water make me seem almost like your average person. If I could swim everywhere I'd be fine. I've often thought that my 'ancestors' should have avoided evolution and stayed in the sea as a fish instead of crawling out onto land. Sounds silly I know.