blueskies

I really think in hours. If I get a few good hours when I'm able to get out of the house and go to the park, or bookstore/library, or visit my sister then I consider that a good day. If I am able to get out of the house for a walk -- try to do this every day but of course that's only the aim, not the reality -- I consider a day when I've been able to take a walk a good day. Also, days when I've been able to do some housework (yesterday it was vacuuming and moving some furniture...yep, actually moving some furniture. Some days I can't lift a washing basket but occasionally for some unknown reason I can have a day when I can move furniture to vacuum behind it?)...well I consider that a very good day. All the things I mentioned along with stuff like minding my grandkids for a while are always followed by exhaustion. Doesn't help that I have very broken sleep. Often I don't even bother going to bed at the moment because I wake up every two hours and this wakes hubby and it's not fair because he has to go to work. Those nights I sleep on the lounge and wake up and go to the loo and then back to sleep and repeat. I pee a lot during the night also, not strange given the amount of fluid I drink. I think I would feel a lot better if I didn't wake so often during the night. If I manage to get enough sleep -- even though it's broken sleep -- I don't feel too bad. But if I only get two or four hours then the following day is going to be dreadful and will probably trigger a severe migraine or my erythromelalgia will be made worse. Stress and sleeplessness are two things I have to improve on somehow. Not letting myself get so stressed and somehow or other adopting a good sleep regime. No one has yet told me how to do that.

Like Kalamazoo I also have erythromelalgia along with POTS. Or at least I think I do. I was diagnosed with it. Then that diagnosis was dismissed. And then last December I was rediagnosed with erythromelalgia. I'm takig neurontin for it now but have had a hard time staying on it. I saw my doc the other day and he told me to persist as higher doses (when I get to them) will probably help me. Do you take anything for erythromelalgia, Kalamazoo? blue

Elegiamore, I'm thinking of you. You've had a very tough time. I do feel for you.

hi Tzipora, When I was in my mid 30s a doc decided to treat me for 'anxiety and panic disorder' (misdiagnosis, it turned out to be pots) with a betablocker and I think it was propananol but can't be 100% sure. I spent a month taking it and when I went back to see him I told him that for the past month I"d often felt like I had a brick sitting on my chest. He told me to stop taking it straight away. In my mid 40s I was diagnosed with asthma -- knock on wood, not a big problem for me but family members have it worse. When my doc told me I my bp was 'high' on a regular basis she suggested putting me on a beta blocker but I reminded her I was asthmatic (I had heard betablockers and asthma did not go well together) and it was obvious she needed reminding. She said that betablockers were then out of the question for me. (BTW, when I bought a bp machine and measured my bp at home I discovered my bp was only high when I was distressed about my health or something else and when I was at doctors having bp taken -- the rest of the time it's mostly average or a bit low). So: from what I've been told beta blockers and asthma do not go together. Did you remind your neurologist that you were asthmatic? Sometimes they 'forget' stuff. And it's our responsibility to remind them. If I was in your position I'd be ringing my neurologist today to check this out more thoroughly. If you can't speak to your neurologist leave a detailed messasge about your concerns of propananol and your asthma and your reliever (you never know when you will need the reliever). If they don't get back to you go see your general practioner (I think you call them pcp in U.S -- not sure) or ring him/her and tell her about your concerns. If I was you I'd be looking into this straight away. blue

Hi, I have low body temperature always but I feel overheated most of the time? I have never gotten a doc to take my body temperature seriously. Not sure why they won't address it with me. The one doc I haven't asked is my pots doc. He's the person to ask and yet I forget. blue

Hi people, I'm not unused to brain fog. It's been pretty consistent for the past 8 years or so. But this is the worst it has ever been. Just then my son rang me and for the first time I asked him if he could get something for his dad's dinner because I'm unable to cook tonight. He suggested where he'd go to get something, telling me the name, a deli that I've shopped at since I was in my early 20s and I'm now 55, and I couldn't work out where he was talking about -- it was like I'd never heard the name before. I was standing up at the time of talking to him and hope that was making the brain fog worse. But I'm freaking out that I couldn't think where the heck he was talking about. I know it freaked him out. Finally I remembered where he was talking about. That's just one little example amongst many. I'm more used to the 'can't concentrate to read' type brain fog. Or trying to find the right words, or forgetting the times things occured (say, trying to remember when I last did something) I'm wondering how bad brain fog can get for others? thanks, blue

So many great points made in this topic. Thank you for starting it kitskatsa. blue

I put mostly housebound. It's hard to answer because I am mostly housebound at the moment. There are other periods when I can get out more. Although when I do have an active day I'm usually pretty housebound for a few days afterwards. I take a step forward. I take a step back. That does get to me. It also doesn't help that we live in an apartment 2 flights up. Plus one of the reasons I am mostly housebound at the moment is due to our hot summers here in Australia. I'm always hot and hypersenitvie to the sun. I dread going out into the sun in summer. Thankful makes a really good point.

Hi rubytuesday, I was watching Dr Oz the other day and he said it's best not to tuck our top sheet in. I can't remember his reason. Because of memory problems caused by brain fog (I hope that's what is causing the memory problems). It makes part of making the bed easier, at any rate. I now have to sleep with only light blankets over me as I run hot. My skin is nearly always hot. Unless it has an occasional freezing spell. So I gave up using heavy comforters in winter years ago. They were a huge struggle for me especially lifting my arms up to lay it over the bed. It's summer now here in Austalia and I'm down to a sheet covering me although because I have the fan on every night hubby has blankets on his side of the bed. Like someone else said, I strip the bed on laundry day in one go but I usually make it up slowly -- in stages. Unless I'm having a good day and then I'm good for doing the whole thing. On a bad day I'm not doing laundry. I must admit Ilve learned to live in 'grubbier' sheets. They often only get changed every fortnight instead of weekly. I was just thinking, due to nearly always feeling too hot - my signature line shoud be 'what I wouldn't give for airconditioning.' blue.

hi jnew, My heart goes out to you because it is tough to live with this thing. Some days I find very tough going. Others not so tough. Sometimes I even find myself enjoying myself. And I take note of it when I do. Sort of store it up so that when I'm feeling bad again I can think back and realize that although, maybe right in this particular moment I think everything is black, there are many times when I don't think that. I find seeing a psychiatrist to be tremendous help although we haven't found an anti-depressant yet that I can take successfully because of side effects or allergies to them. But being able to see my psychiatrist really helps me keep stuff in perspective. We talk about the problems of having an illness that has symptoms that can be so hard to manage and it just helps to talk it out with someone that I'm not related to. I've talked enough about it to my friends (don't have many friends) and family. They don't want to hear any more about this illness -- they tend to feel frustrated because they can't fix it -- and I understand that. They feel for me but they don't grasp what it's like to have it. My psychiatrist does understand so much about dealing with this stuff and when he doesn't and says something that doesn't apply I am able to point out to him that 'no, it's different than that.' and he listens and 'gets it.' The only problem I have with seeing my psychiatrist is the difficulty actually getting there. But I nearly always seem to make it, only cancelling the day before if I'm going through a really rough patch. I don't attempt to catch buses to see him anymore. I grab a cab. I've got a pots doc, an allergist, a pain specialist, a neurologist, a general practioner, a gastroentorologist and they all help me. But it's my psych that helps me the most. My psychiatrist, along with this forum and imazebra forum has been, over the years, of enourmous support to me and although at times I feel very dispirited it really helps to know that there are other people out there who know exactly what I'm feeling. So make sure you hang around and keep posting and reading. The people on these forums really do help and they know a ton of info between them and many ways of coping with this illness. Plus, when feeling lousy it really helps when I respond to someones post, too. Writing my response helps me get stuff into some sort of perspective. And when I start a start a new topic I know I'm going to get great answers from people that offer up some great advice or just plain, but invaluable, empathetic support. welcome, blue.

I've wanted a service dog for so long. But POTS is not considered a serious enough illness here in Australia, it seems, to qualify. It's so sad when you think of all the dogs that are put down each year. And then when you think that some of them would probably be suited to being service dogs it just seems like a tragic waste. Alyssa, how do you manage to exercise her on your bad days?. Just wondering. I used to own dogs some years ago and I realize the care and exercise they need. I had a dog that died not long before I was finally diagnosed with pots. On one hand she did present a difficulty for me in looking after her but I managed. Her comforting when I was overcome by what turned out to be pots symptoms was immeasurable. I really miss her. She made long days and nights much easier to bear. mdcountrygirl, I've only recently experienced a couple of episodes of extreme shaking and difficulty in getting warm which lasted for about 2 hours each time. Both times they were proceeded by violent vomiting. A new symptom. Much more than those feelings of weakness that would see me have to go straight to bed with the help of my husband to get there. I'd be semi asleep before I even got into bed. Actually the sleepy feeling often proceeded the weakness. I haven't had that symptom for some time, now. knock on wood. But the vomiting, extreme shaking and freezing cold feeling was a nasty surprise. Fingers crossed I won't experience them again.. blue

How sad for your grandmother, Issie. I was 50 when POTS was diagnosed and I'd had signs of it ever since puberty at least. I experienced better and worse times but never great health despite being very fit for most of my life -- I exercised a great deal but with these 'strange' periods of now I what realize were othostatic tachycardia problems which would knock me sideways and lay me flat for at least a week sometimes, sometimes up to a month. That was until pots hit hard. I was diagnosed with pots about 4 years after it all became too obvious for doctors to ignore and tell me it was in my head. The symptoms were 'real' and measurable by then. The doctor who diagnosed me is brilliant. He's considered 'the man.' according to an anaethetist I was talking to only 2 days ago. Being in Australia we've lagged behind the U.S. a bit in regards to dysautonomia. I think i would be crazy by now if I hadn't gotten a correct diagnosis finally. I had begun to believe i was crazy. It had been implied by doctors enough and indeed I was treated for Panic Disorder. That treatment, needless to say, did not work. blue

Hi Alyssa, Like Ernie, when I'm able to use my cpap machine I don't get the sleep paralysis stuff, not that I can remember anyway. Without the cpap I will have times when I get it every night for an extended period of time -- a month or two perhaps. As well as not being able to move, I can't speak or make any noise and I can't take a breath. Whatever the cause -- and I think it's stress for me -- when I wake up like this as scary as it is I know my body is going to catch up with my awake brain really quickly even though it seems to take forever. I'm not dreaming while awake like lette. I'm awake and still in the state of dream paralyisis -- that paralysis that stops us getting up while dreaming. That's how it's been explained to me, anyway. As to sleep jerking which can wake me up, for me it's a combination of meds or stress. Either can cause it. I notice it more when I take certain meds. eg. an antihistamine called periactin aka cyproheptadine, or as I learned in hospital 6 months ago, morphine sulfate will do it -- big time. I also get 'awake' jerking from some meds eg zofran for nausea. But those sorts of jerks only happen when I'm relaxed and trying to get to sleep. If I get up and move around they stop happening while I'm up. It might be a good idea for you to have a test for sleep apnea. I had it and the tests show it's pretty much positional sleep apnea. When I'm on my side it's mild, but when I lie on my back it s goes from moderate to severe levels. When I'm unable to use my cpap machine because of pressure urticaria - which makes my face so sore, red and hot I can't keep the mask on - and because of excessive sweating I wear a t-shirt to bed into which I've sew a couple of socks, each filled with tennis balls. It keeps me on my side and stops me rolling over -- hence I'm not getting over the top sleep apnea nor do I seem to wake with sleep paralysis. Oh, lying on my back will often cause me to wake with level 9 migraine. Maybe you should try the tshirt, socks, tennis balls idea and see if it stops the sleep paralysis. I can't see how it would hurt you to try this and it might just help. However, I don't like giving advice because I'm not a doctor so as the saying goes, "Please check with your doctor first." As to the numb feeling in your stomach don't ever let a doctor make you feel it's all in your head. Get it investigated. It's probably nothing serious at all but if you are experiencing it, it's happening. Although, sometimes when we are anxious about our health we can body scan and get to feel all these weird little things that are occuring but do mean nothing. It's just that because we are anxious about our health we notice them. I have done this in the past. It does not, however, mean it was all in my head. Just that I was feeling each odd little sensation and sometimes worrying about them. But imo if it's worrying you and you don't feel the doctor's answer was enough explanation than I think you should continue to investigate it until you get a satisfactory answer.

Hi issie, Tramadol is supposed to be an amazing drug for those for whom it works. Some people get great pain relief(eg. my brother in law raves about it). Others like my sister and myself -- well it has no stronger pain killing properties for us than water. Glad it's working for you. I hope you are getting the sort of pain relief my brother in law talks about. blue

Hi IDream, Yes, I take low dose opiates daily (for chronic daily migraine associated with pots or with a kneck injury depending on which of my specialists you speak to) and I know that very often they lower my bp and I suspect that they lower my pulse rate too. I don't get the 30 plus increase in pulse rate when I stand up unless it's first thing in the morning. I do get a heightened pulse rate still, but it seems that the numbers aren't as high as they used to be, much more often than not. But then again I've been experiencing a lot of rapid pulse rate with excessive sweating this past year, too, when lying down as well. I think it was a bp medication causing it. I stopped the medication and those symptoms seemed to have resolved. Knock on wood, I seem to be back in the mostly slower pulse rate now. I had a surgical proceedure done two days ago which involved twilight sedation (can't remember a thing). When I woke up they were taking my bp and pulse. I asked 'low?' and they said 'yes, both low.' I would have been given some sort of opiates, I'm sure. I believe this response is normal for a non dys person so I think we do get some of that effect. blue

Not sure if this is relevant but years ago when pregnant each time I experienced stronger pots symptoms (this was a long time ago when they knew nothing about pots). I was told it was 'all in my head.' Or that the symptoms were 'probably' due to pregnancy. I believe anything gyno or ob. related can contribute to pots symptoms. If I was you I'd make a list (so as not to forget anything while at your appointment) and tell the doc everything. Some of it may be relevant, some not. But I believe in full disclosure with whatever symptoms that are bothering us. I also believe in 'gut instinct' and that often we really do know what causes some problems. blue

Swimming is usually highly recommended for POTS. I swim each summer in the sea (can't swim in a pool in winter because chlorine causes skin problems and makes my lungs feel like they are burning?). I stopped swimming at the end of last February (forgot to mention I'm in Australia so summer is end/beginning of year here not the middle) because we moved house then hubby got sick and when all that was over we were into winter and water was too cold for me to swim. I've been feeling sicker and sicker but I started swimming again a week ago as it feels so good when I'm fit enough to swim a kilometre. Not at all like exercise on land. My body feels better in the water than it does on land. I often joke that if I could live in water and swim everywhere that I'd be fine. I read somewhere that water exercise benefits is due to compression qualities of the water. It keeps the blood pumping around our bodies. After a swim I am clear headed for a while and a migraine will disappear while I'm swimming and will stay away for 2-3 hours afterwards usually. Oh, and if I'm having a bout of the hot burning skin sensation (erythema) it will stop that pain for a while, too. It might take some weeks of swimming to get over that heavy feeling that often occurs when you (I) come out of the water and feel gravity full force again. I feel like my whole body weighs more and legs feel heavier -- much like I feel when I'm having trouble walking. I think the combination of it being a horizontal exercise AND the compression quality of water makes swimming so easy for me. Must put a warning in though: if you are given to fainting -- and a lot of us are, it is advised that we swim with someone watching us. It IS possible for us to faint in the water which could mean drowning. This year I've added in walking a bit in chest high water after my swim. I have no difficulty doing it. Yet, on dry land walking can be a real problem for me. I was told by a doctor that walking in water will also help with retaining bone density, something that swimming does not do. So if you can swim, give it a go! My pots doc is a big fan of swimming for exercise if you have pots. I used to complain that the fitness from swimming exercise didn't seem to translate to real life but I've now realized because of 8 months of not swimming that I've gone down hill pots-wise and that it is very likely because I have not been swimming in this time. In my experience it will take me about 4 weeks of swimming 5 days a week to start to feel the strengthening benefits. But meanwhile just having my body feel light with no exertion while in the water is a good feeling. One last note: make sure you drink plenty of water - before and after swimmng and during swimming if necessary. Apparently we do sweat when swimming only we don't know it and as we know it's very important to drink water to keep hydrated as much as possible. Hydration when exercising is even more necessary. blue.

Hi Justin, Just a heads up on taking a xanax and drinking coffee together. I read somewhere-- ages ago - that caffeinated coffee can decrease the effectiveness of xanax. I take xanax and I also drink one coffee a day. But I always leave about 2 hours between drinking the coffee and taking the xanax. Otherwise the Xanax doesn't work as well for me. BTW, from reading I've done, anyone taking cortisone and xanax could have the same response. blue

Hi TLCsmom, I sound a lot like your daughter. Chronic urticria. Erythema. Anaphylactic response to aspirin (nearly died). Anaphylactoid reactions to god knows what, a few times. Angieodema at times. Dermagraphism seems to be always present when I bother to test for it. For the past two years I always have hives somewhere on my face - chin and temples being a 'favourite' site. Plus I am now getting them on my upper back. I try not to take anything. I have an epi-pen, now - but so far have not had to use it, thank god. I do take anti-histamines when things get more unsettled. I have cortisone tablets to take if things get worse. But when I get urticaria all over half my body it's off to emergency. I react to so many things, including water (I started doing this last year - when I swim in the sea I can get more hives). But water reaction is not serious for me. So many of us have this problem. It was my allergist who suggested 4 years ago I see another doc in another field, too. That's how I ended up being diagnosed with POTS. I wasn't looking for a diagnosis but when he started asking me all these questions at my first consultation I thought for the first time in my life,'hey, that's me.' Up until 10 years ago I didn't have one single freaking allergy. Although looking back I certainly had other symptoms of POTS -- since puberty. Up until 8 years ago I'd been told it was 'all in my head.' (I wish). It wasn't until 'concrete/visbible/measurable/persistant' symptoms showed up that doctors started to believe that I wasn't nuts. Lovely of them -- not. Sorry, can't help myself. I'm still a bit angry about it all. It's not nice to be thought to be crazy for 2 decades. blue

Hi -- trick I use to keep me off my back when sleeping. I need to sleep on my side otherwise symptoms are worse and I've tried everything to achieve this but would always end up on my back. Now I use the trick of tennis balls in a sock sewed onto the back of an old t-shirt. I just put the t-shirt on before bed and it keeps me on my side. It took me a couple of weeks to get used to it but now it's good. I have severe sleep apnea and should be using a cpap machine every night but sometimes I just can't - due to other physical problems. So I knew about the 'tennis ball trick' for people with mild sleep apnea. And applied it to this problem. And it works. blue

Hi Sparks and Lieze, I get those feelings. Always when I'm standing. My first one happened when I was 16. I'm 54 and I still get them. They seem to come in 'episodes' - I'll go ages without experiences them and then have a number of these 'episodes' in the space of a month or so. Very disconcerting (and frightening when I first started to experience them) -- but I've lived with them nearly 40 years and have learned that although they are uncomfortable, nothing worse is going to follow in my case. I gave up years ago asking doctors what it could be. Since being finally diagnosed with POTS 4 years ago I've just assumed they were related to the orthostatic stuff but haven't actually asked my pots doc about it. I guess I should. I keep forgetting. So many questions and so little time, etc. blue

Hi to the rest of you! I'd forgotten I that I'd written the original post asking how many Aussies on the site. I brain it on the brain fog. I have a lot of it at the moment and have for some time. Sorry I took so long to respond. blue

Over time, I've blamed a lot of things for the problems in my marriage. POTS was only one thing, I've realized. Now, my opinion is that it is always more than 'one' thing. All relationships take hard work as far as I can tell. POTS makes life difficult but the way I see it everyone seems to have something that makes life difficult in one way or another. It's all relative. blue

Hi Jodie (and all other Aussies - I'm so happy to say hello), Nope, you aren't alone in Australia. Although very little is known about POTS here since I was diagnosed 4 years ago there has definately been some improvement in that area. I don't get the look like I've got two heads when I tell a doctor I have POTS, now. When I was first diagnosed I'd have to explain it was a dysfunction of the ANS before they'd even begin to glean what I was talking about. Family, friends and others have no idea and no one (outside the medical field) that I've told I have it has ever heard of it. I'm in Sydney and it was a vascular diagnostician who diagnosed me with POTS -- I call him my pots doc. I believe there is a POTS specialist at Westmead Hospital in Sydney, Jodie, as well. I did write to Dr Murray Esler some time back. He turned out to be a very nice bloke who took the time out to write me a very detailed letter back to me but he didn't offer anything I didn't already know or hadn't found out from my pots doc. At the time he was taking new patients and offered to see me but I was not up to flying to Melbourne (plus, let's face it, this illness gets expensive enough as it is and I just don't have the financial resources to follow every lead -- and certainly, not being able to work means plane fares and hotel stays are out of my price range). Plus, I must admit I get sick of seeing doctors. I have enough of them already. Lucky you for living in Byron Bay. I first saw Bryon when I was 19 and a hippie. LOL. I'm now 54 and have been lucky enough to return a number of times over the years. It certainly has changed from a sleepy little fishing village but it's still incredibly beautiful. My sister lives in Mullumbimby. blue