Csmith3

My money would be on most of your symptoms being from POTS. At your age, I would have listed very similar problems (and they were gradual onset), but not to the same extent - my symptoms have never been as bad as yours. But that doesn't mean it can't be POTS - severity of symptoms differs. If you do the things on the "What helps" page, do you feel any better? And do the things on the "What to avoid" list make you feel worse? Of course they won't all apply to you, but they should give you an indication of how many of your symptoms could be due to POTS. In your shoes, I would want to see a POTS specialist and ajw's remarks look very sensible about finding someone appropriate and that if you self-fund, the main costs involved are for tests rather than the doctors consultation time. I don't live in the US so can't comment on the merits of the insurance battle. But I would want to see someone asap and whilst I don't doubt that it would be great to see Dr Grubb, I think I would start with someone who has a shorter waiting list. I wouldn't get too concerned about prognosis because no one is going to give you a firm prognosis you could rely on. Because it isn't just a case of how long the POTS lasts, but how bad the symptoms are at a particular time as it seems to have a habit of relapsing and remitting. Unfortunately, we have to accept that research into dysautonomia is at a relatively early stage and this is what makes diagnosis, treatment and prognosis so difficult. I am not aware of POTS developing into anything else. From what I have read, males are most likely to be affected in their teens, so you might find this is a short term problem (or will at least significantly improve). Hope you find some help soon.

I understand that ultimately you just want to get better and don't want a false TTT result to stop that. I would try not to worry. Given your recent posts, it would seem likely that your symptoms will be triggered, and long before the hour is up. I have had the test done when I felt fine beforehand, but it still produced results because the tilting is enough to make me ill. You don't have to faint for them to get information (just be symptomatic) and, in fact, some places prefer to stop before you faint. And if you felt ill but it wasn't down to BP or HR, then something else needs fixing. I was apprehensive before my first TTT, but was pleasantly surprised that it was OK. It's a bit of an odd feeling being suspended at that angle. I noticed my calves felt really weird, maybe because I'm used to being able to flex the muscles to keep the circulation going, but that just isn't possible during the test. But despite it sounding like an instrument of torture, I didn't feel too restricted. I was also concerned about feeling really awful for a long time on the TTT, but actually once I started to feel ill, it didn't take long for it to progress into a faint. This is quite unusual for me, but I suppose in the TTT you can't do the normal things that would make you feel better and stop a faint. The other piece of good news is that if you do faint, they can tip the table back very quickly so the recovery was quicker than I have ever experienced and an hour or so later, I was fine. Regarding the risk of coding, I think that can happen if someone faints and then is deliberately kept upright (not in TTT environment, rather when someone erroneously thinks this is a good idea). I am sure the staff at Cleveland will tip the table back down as soon as you get close to fainting, so this shouldn't be a problem. I know others haven't had such good experiences with TTT, but hopefully you will also be pleasantly surprised. Good luck for next Weds

I've taken calcium channel blockers in the past at low and relatively high doses. At that time I had POTS and low BP, but wasn't getting it monitored so I don't know exactly what effect it had on either. However, I can say that I didn't feel any better or worse on the calcium channel blockers. I wasn't getting chest pains at that time so can't comment on whether it would have improved them. I bought a GTN spray, but I've never dared use it. In a small percentage of people it can make matters worse and I would have thought that with POTS, EDS and low BP, I would be one of those people. I was interested to see in replies to your recent post that others successfully use GTN. To be fair, I haven't needed to use it recently either, but if I did I would want to be in easy reach of the hospital in case I made matters worse. Sorry to hear the chest pains are continuing. Hope you can get some relief and some answers soon.

Definitely self care. I think we've probably all tried the "ignoring POTS and hope it goes away" strategy, if only before we got a diagnosis and wondered if it was real. Well it didn't work for me, and I'm guessing others feel the same. If (only!) we could keep POTS from our minds, I think we would feel a bit better as there is a tendency to be on the watch for symptoms in case things suddenly get worse, and perhaps err on the side of caution. You could say this about any illness, but it's just a distraction technique and fundamentally, you are still being ill even if you try to pretend for a while that the tachycardia etc isn't happening. The main point is that without planning and pacing, there is a high risk of a crash and we all know that is to be avoided at all costs. I think that what non-POTS people don't understand is the difference between a POTS episode which may waste a few hours/the rest of the day and having a crash which can take weeks or months to recover from and requires a total change in lifestyle. Would they go for a day out without a care in the world if the price was spending the following 6 weeks in bed to recover? So I'm with you - planning and pacing is the way to go to maximise what is achievable over the long term. Perhaps you should take a copy of the list of responses you get to your message to the therapist!

Don't know if or why there is a connection, but just wanted to add that it is a problem for me and my male relatives (and POTS/dysautonomia seems to run in the family).

If it makes you feel any better, I go for the opposite strategy but it probably leaves me in a worse position. I occasionally get some really bad chest pains. I've never had it checked out (have hospital phobia - keep telling myself I'll get it checked out next time it happens!) and I'm left wondering if it's something really serious or not. It then takes some time for me to get my confidence back that it won't recur. I don't think anyone would criticise you for getting chest pains checked out. There seems to be quite a few of us here of a similar age (mid 30s to mid 40s) with long term POTS. Like you, I wonder what's in store next as I begin to realise that most of my health issues come down to POTS or EDS. Hope you recover soon, best wishes

What an awful situation. I am so sorry and feel annoyed on your behalf. I am also unfamiliar with per diem pay, but presumably it means less money and fewer employee rights. I don't understand how you can be transferred from one to the other without signing a new employment contract. Are you in a 6 month probationary period that limits your rights? Like you say, it looks like they are trying to use your faint as an excuse and no one wants to admit it. If you escalated this by handing in a written complaint, would that have any positive effect? I was thinking they would then have to do something and explain themselves in writing, which could be embarrassing. I think I would consider this before escalating further to legal representation. I do wonder if you have prejudiced your position by carrying out duties you had "excluded" up front, even if you meant well and were providing cover over the holiday period. Either way, I think I would be looking for another job. You have a valid non-medical reason; your pay has unexpectedly been cut.

I sympathise with your embarrassment and hope this doesn't stop you going back to the leisure centre. I can swim (badly - nothing to do with the POTS!) and that doesn't make me ill. But I once went to aqua aerobics years ago and it ranks as one of the things that has made me feel the worst. I have no idea why. People say it is gentle exercise, relaxing and that it should be easier because the water is supporting your weight. Well for me, it felt like really hard work and, like you said, you can't easily get out of the pool or do less. Our aerobics instructor was like an army officer shouting out the instructions and telling us to try harder and I was too scared to get out of the pool and walk past her to the changing rooms! Needless to say, I haven't been back (though coincidentally it had recently crossed my mind to try again with a different instructor - maybe not!) Best wishes

Normally mornings are my worst time of day, but I occasionally have patches where I'm also ill late afternoon. I end up hopping on and off my chair at work; I lie down for a bit, think I feel better so get up, but the feeling faint more or less immediately returns as I sit up so I repeat this cycle over again! The late afternoon problems seem to be due to low blood pressure and tend to happen in summer (my office is not air conditioned and tends to get very warm late afternoon). Increasing florinef/midodrine is the answer for me (and I think you already suspected this) or just the weather turning cold helps!

I'm sorry to hear you are having a difficult and stressful time. Are there some foods you particularly enjoy? Perhaps you can eat those more often in the short term to get your confidence back. If I'm struggling with POTS, I tend to eat food that is easily digested (high GI is good in this instance), as for me its length of digestion time rather than the particular food that matters. If you continue to feel unable to eat, I sense you may need professional advice sooner rather than later. POTS is a real pain, but it is not life threatening. I hope you can take some comfort from this. You have lots of other issues to deal with and don't be embarrassed to ask for help if you need it. Best wishes.

I'm no expert, but for what it's worth, I suspect that some of the time it's NCS but some of the time it's something else. And, like some of the others, my guess is a neurological cause like epilepsy. Or can the narcolepsy prolong a faint - I don't know? I have POTS, NCS and I have had seizures, but nothing like you have described. And the recovery time you mention is what really stands out to me; it is much longer than I would expect from a faint. Did you have one of these episodes whilst you were on the 7 day EEG monitor? If not, the monitoring isn't worth anything and if you are being ill more frequently now, if may be worth repeating if you can. Although flickering lights/lack of sleep etc are used to try to provoke an attack, they rarely do, so again, this doesn't really get you any nearer to a diagnosis. In the UK we have a centre where 20 or so patients stay until they get a diagnosis (or it can be used to reverse an epilepsy diagnosis which is queried) - individuals are ECG and EEG monitored and literally watched 24hrs a day until enough episodes happen that they can make a diagnosis. I wonder if you have anything similar you could access. I suppose the other route to go down is identifying and stopping the triggers. I feel your frustration from the length of time it is taking to get some answers. I'm sorry I can't be more helpful and wish you luck in bringing this to a swift conclusion.

I have non-allergic rhinitis. It has driven me mad over the years with the chronic sinusitis and nose bleeds, but I finally feel like I have got this more or less under control and I am a happier person for it! I did take the hayfever steroid sprays for a number of years and that helped reduce the nose bleeds (and shrunk the nasal polyps) but the sinusitis persisted. I then went to see an allergy consultant who confirmed it was actually non-allergic rhinitis and that typically the triggers are fumes from cars/buses/trains, cold air, bugs in old aircon systems and for some people, sulphites in foods (eg, in the dried apricots that retain their orange colour). He prescribed a nasal spray called rinatec and said that typically, after about 6 months use, your body learns not to overeact to the triggers and then the spray can be stopped. It took much longer than 6 months for this to happen to me, but the improvement has been great. I also try to avoid the triggers, eg, commute on trains that have windows that don't open and let the fumes back in, put a scarf over my nose and mouth when its very cold. I have tried nasal irrigation this year. I also wonder if there is some EDS connection in that work I have had done this year on my jaw and surrounding muscles (which is probably correcting imbalances from orthodontic work carried out in my teens) has coincided with a major improvement in my sinusitis. Finally, I just wanted to say that I have heard doctors being disparaging about using sinus remedies available in the pharmacy (I mean the tablets rather than sprays). I know they aren't a great solution (and most now include stimulants which is a recipe for tachycardia), but used occasionally, they can provide some temporary and welcome relief. In particular, I take them as soon as I have a cold to try to prevent sinusitis.

There are a few of us here (myself included) that have Ehlers Danlos type 3 (joint hypermobility). It isn't clear why the 2 conditions can go together, but there is a statistically significant trend for people with ED3 to have POTS as well. It's only a suggestion as there are lots of possible reasons for getting POTS, but is worth considering given how long you have been ill. Not that it changes the way POTS is treated, but it is nice to have some sort of explanation!

I'm taking 0.1mg a day. I take it at night which seems to work better for me, otherwise I think it irritates my stomach if I take it in morning and evening doses. I haven't had any problems with it, other than sometimes getting slightly puffy ankles. The florinef preparation available here changed last year and the new one has to be kept refrigerated. I don't know if it's coincidence, but I seem to get on better with this than the old version. With the old version, I had some minor issues with reduced immunity (picking up every cough and cold going round) and always feeling hungry (ie weight gain!). Either these issues have settled over time or the new preparation works better for me.

Sometimes I have had swelling around my ankles, but usually I am OK and I'm not sure what I'm doing differently when my ankles swell. Perhaps they tend to swell more if I'm less active? I didn't know that swollen fingers could be due to Florinef - I thought it was "one of those things" that we tend to get, but also in the general population when it's hot. I haven't been warned of any long term cardiac risk. Given we are taking Florinef for a non-licensed use, I'm not sure there would be any reliable studies on the effects of long term therapy. This is the story I've been sold! The way I look at it, taking Florinef long term isn't ideal but it gives me enough of an improvement in quality of life that it is worth the risk. I will probably see a cardiologist in the next few weeks - if they express any concerns over long term Florinef use or can see a change in my echocardiogram (since my last scan I've taken Florinef for about 4 years) I'll post again.

That's great news - well done for persisting. Perhaps you could write a letter to send to each member of your family. I know it sounds formal, but it would help people less familiar with the dyautonomia issues to understand the study's importance and to take in the information in their own time. You could always follow it up with a call when people are calmer and less emotional. Good luck!

Yes, I find exercising my arms is a trigger, particularly if they are raised at or above shoulder height. As usual, it helps if I am sat down, but sometimes this isn't enough to stop me being ill.

mkoven I see you have EDS (I have too) so perhaps POTS has been a long term problem, but for how long has exercise been difficult due to POTS? I was wondering whether your latest crash was typical (in terms of severity and how long it is taking to get back to your normal self) or if things have been getting worse over time. For me, post-exercise/overexertion crashes are probably my biggest POTS issue now (I'm 35) and it takes me about 4 - 6 weeks to recover whereas 10 years ago I would only have been ill for a couple of days. I wish I had some answers for you. I wonder if the cardiac rehab was just too much or on the wrong day. If I have a day when I feel instantly tired on exercising, I find the best thing to do is to quit immediately. It is so tempting to make some effort (particularly if you have travelled especially to the gym etc), but for me that is asking for trouble. Perhaps a little walking would start your recovery. I am not surprised you have lost some confidence; I would accept some help from your spouse and let them chaparone you until you feel a bit better and can predict if and when you are about to faint. I hope you see some improvement soon. Best wishes.

I was told it was due to dehydration, though I'm not sure if this is the only reason. I tend to get them when I have sinusitis. In my experience, they are difficult to shift and rather than Advil, I would try a painkiller with a combination of active ingredients. I don't know what is available at the pharmacy in the US, but I would buy a paracetamol/codeine mix (or paracetemol/aspirin/caffeine mix). Hope the headache goes soon!

I think I know what you mean. I find it a bit scary as I'm stuck lying in bed feeling awful, but unable to move or do anything about it. Even sitting up is out of the question. I'm not sure why it happens. I've had to wait until I've improved a bit before I could check BP and HR and when I did, they were low but not exceptionally so. That said, my guess is that it is low BP as low BP tends to keep me awake whereas low HR doesn't.

I have had occasional attacks of angina, but never had it properly investigated. Mine is typically triggered in cold weather if I'm doing mild exercise (eg, walking up a hill, dashing for the train), perhaps when I'm tired or had a busy day at work. The sort of scenario you would expect in an ageing businessman, but this started in my 20s! It has happened more recently after sustained tachycardia (only in low 100s but for more than a day). The chest pain comes in waves and is very intense, but 15 minutes later I'm absolutely fine. I'm quite relaxed about it now as I seem to recover OK, but there is a doubt in the back of my mind that one day this might turn out to be serious. I share your concerns about the possible solutions. It is one reason that I don't take beta blockers as they made these attacks occur more frequently. I hadn't heard of microvascular angina, and have just had a quick look on the internet. It would be reassuring if that diagnosis applied to me. I might ask my cardiologist about it - if I find out anything useful I'll let you know, but this won't be for some time.

I'm also one of the people that loses weight when my POTS is bad, despite an increase in appetite and craving calorie rich foods. Once I started on medications, my weight steadily increased and I've found it hard to eat a normal amount of food after many years of overeating whilst being very thin. Of course, age also starts to make it harder to lose or maintain weight and, like everyone else, I really need to exercise a bit to stop my weight just going up and up. I wonder if my rate of metabolism has decreased on all these medications whilst steroids/salt loading increase appetite.

Sorry to hear you are suffering. I could have written almost the same email several years ago. I then had Depo injections which stopped my periods (after about 6 - 12 months) and also reduced my headaches which was an unexpected bonus. Unfortunately, my doctor wasn't comfortable with me having injections for more than 5 years so I had to find an alternative. I now have an implant (Implanon) which still deals with the painful periods and headaches, but I have had a lot of irregular bleeding which has been a bit of a nuisance.

I just wanted to say that you sound like you are being very sensible and realistic about future consultations and outcomes. You know yourself better than Joe Public who tells you to go to the doctor every time you are ill with POTS. Make sure the decision is your own and don't feel guilty for reducing the consultations if that is the right thing to do (ie, you are not gaining any benefit from them). I would try every 3 months for now and see how it goes - you can always change your mind. Maybe you will find even that is too often if you aren't changing medication. I found benefits in consulting less often - at these times I think about the POTS and medication less and am probably better for it. I currently have consultations every 3 months, but for me this is frequent! Once I've stabilised my meds again, I will aim to reduce reviews to once a year, though bear in mind I have had POTS a long time. Best wishes.

Yes, I know what you mean. I thought it was blood pooling in the arms in the same way that it happens in our legs. My hands go purple and take on that mottled or blotchy appearance (I hope one of these words translates OK!) before my legs do the same. In fact, I use my hands as an indicator of how far progressed I am in a POTS episode!