Griffin

... but there are times when I am tired for no reason, and feel tired even laying down...

I get that a lot. Sometimes it is physical exhaustion but it just continues even when resting, other times it is also mental exhaustion, desperately need to sleep and cannot.

The main thing that lying down does help though, is the gut involvement in my POTS/Dysautonomia. I seem to get intestinal blockages when I'm standing or sitting up, but when I lie down, they completely clear with lots of gurgling and releasing gas.

I get something similar - the more exhausted I am, the more I am standing or sitting upright, the more gas builds up right through my gut with constant releases at both ends! Lying down is the only way to stop the build up.

I spend my life reclining as much as I can. This means I am using the least energy I can manage, without staring at the ceiling all day. Have to have my head supported too as supporting it myself can wear me out. It doesn't in itself help all the symptoms go away; for that I have to spend several days hardly getting out of bed.

My POTS is just one aspect of my Chronic Fatigue Syndrome.

I dong have sleep aponea but do have leg jerks which continually bring me out of slow sleep, so insomnia plus poor sleep quality.

I had major surgery and a surgeon who did not believe in chronic fatigue syndrome / pots etc etc. I did warn them all, before hand but got ignored. Two days after surgery my haemoglobin dropped to 3 and I had an emergency transfusion and got an apology from the surgeon. So, my advice, is to make sure they really are fully aware of your condition.

Tilly, I'd endorse that advice aboout Ivabradine. I am about to go on it soon and am hoping it will help.

I have mito damage and very low energy ratings with poor energy distribution too. I took all the recommended stuff for a couple of years but it made no difference. Well, I mean it made no difference to my energy levels. It may have been good for my cells, but as I couldn't discern any difference, and it cost a lot, and I was sick of swallowing hundreds of supplements every night, I just gave it up. I don't know if mito damage is a symtpom or a cause.

I have this too. It's 5 am right now. I've had it for the last 6 years and it drives me to despair. My life is a complete mess and nothing I try has ever worked. Sleep drugs, and even melatonin, have no effect on me either. I, like you, have circadean rythm disorder, been to sleep clinics, the lot.

I end up lonely, wretched, more exhausted than ever, tachycardia, dizzy, etc.

At other times, daytime, I feel so ill from it and so tired, I can't stay awake, and then it makes the night time waking even worse. If I manage, which occasionally I do, to get my clock sorted, it just reverts back to hopeless the next time I have to go out like to a hospital appt. which wears me out.

I just wish there was a drug that worked.

It would be bearable if one had any energy to do stuff in the middle of the night, but of course one doesn't.

Thanks Jana.

Hi Jana

Lowest BP is when lying down.

106/52 lying down, pulse 94, going to 108/69 standing, pulse 124

Highest Pulse when standing up is 150 (BP 119/76), and pulse quite frequently between 130 and 145 when standing still.

It's hard to make sense of it all.

Hi

I'm in the UK too. See a heart consultant in London. Not officially diagnosed as POTS (I don't think he has heard of it) but with hypotension and tachycardia and had + tilt table test.

I think it is hard to get diagnosed in the UK as it seems relatively unkown condition. My low blood pressure was considered wonderful by all doctors, and no one was prepared to see how awful it was to live with. My fast heart rate was treated as anxiety until a 24 hour monitor showed it wasn't (and it is fast even when asleep). I had to push and push and see different consultants until they took any of it seriously.

Best of luck.

Thanks for helpful replies. Feel better informed now. Yes, I am planning to ask him the why's and wherefores. He's been dithering around for so long now I had sort of lost confidence.

My heart specialist has finally written to my GP that he is going to treat my hypotension and tachycardia.

He has always said to me that tachycardia is compensatory to the hypotension, ie the heart beats faster to try to raise the BP, and that therefore the low BP is what needs treating first. The BP is the primary problem, the heart secondary and caused by the BP problem.

However, in the letter he says he is going to treat the tachycardia, and only treat the BP if necessary after that.

I am wondering why he might have swapped the two medication trials round.

If he treats the tachycardia, but not the hypotension, will lowering the heart rate also raise the BP? I would have thought it wouldn't and that in fact it might make the heart strain even more to try to raise the BP with the heart medication working against it.

Am I missing a trick here?

Maybe entirely irrlevant but diabetes can cause excessive thirst.

I was first diagnosed with CFS, then much later diagnosed with Innapropriate Sinus Tachycardia and Hypotension.

The exhaustion is awful and so is the fatigue (I experience them as slightly different feelings). My sleep is severely disrupted. Often need 14-18 hours sleep and often awake all night. I also have Delayed Sleep Phase Syndrome and Periodic Limb Movement in Sleep (PLMS_ and Restless Leg Syndrome (RLS), so the quality of my sleep is awful. Basically I'm a mess !!

I don't think any of this is unusual though for people with POTS or CFS. Although not being unusual isn't enough to make it cheerful news

I read testing was available in Europe on one of the CFS forums.

Basically you apply at http://www.xmrvtesting.co.uk/ who send the blood to the http://www.vipdx.com/ lab in the US mentioned above.

Looks like you have to pay both so makes it very expensive and I don't know if anyone has used it or would vouch for the website.

Also, the test isn't standardised yet so personally I would wait anyway.

I'm finding all the media and internet hype a little offputing on XMRV as it is far too early to tell what the implications will actually be.

Went through a phase of vibration on waking, but my hands would be visibly shaking too. It was atrributed to medication. But I have the sensation of internal vibration pretty often at all times. Other people can feel it if they hold me which always freaks me a bit.

Sick and Tired of being Sick and Tired

Sums me up at present. Went through a long patch 3-4 years when I accepted it all. Not any more. I was offered some hope with treatment and and I felt over the moon, then the consultant changed his mind and then I was dashed back down on the rocks again.

Find keeping my expectations low allows me to feel less disappointed.

I've a stiff neck that won't go away. If I turn my head there are noises (my grungy than cracking). I've been told it is "just" muscle spasm.

Shopping is exhausting. And unless you go to only one or two shops, or a small supermarket, involves quite a bit of walking which for me is exhausting. Another downside is queing at tills. I nearly pass out stading still. I used to do supermarket shops to have a bit of exercise but they are almost always beyond me these days. Thank Goodness of Online shopping.

I came to POTS via CFS/ME - was diagnosed with that first. Then picking out specific symptoms led to POTS. Withmy heart racing double time (and still racing when asleep) my doctor said it would be contributing to the endless fatigue.

I have highly disturbed sleep. Often go all night without sleeping. Often need 18 hours sleep. I have a "delayed sleep" disorder which means I don't get to sleep much before 3 am ever. I also have "PLMS" - periodic limb movement in sleep - which means I don't stay in a deep sleep but keep surfacing so the quality of my sleep is awful. At present, if I am woken before mid afternoon I feel so ill I can't function at all. Ordinary sleep meds don't do much at all for me. I have to plan for days when I have appointments very carefully. Life is a nightmare.

Thanks Erik. There seems to be a grey area on how drugs are used here in the UK. I know they use various drugs for conditions where it is the side effects that are what's wanted. Maybe this doc. is conservative. Re. NCS I've only actually totally fainted once, but get the pre-syncope a lot like you and it's certainly not life enhancing.

I know I was prescribed fludrocortisone without concern of existing aldosterone level... just to boost whatever is there. I'm not sure about other folks or if your doc has a solid point or not. Near as I can tell, in the context of POTS or similar (as opposed to treating Addison's or related illness) one isn't "hormone replacing" but is intentionally augmenting that effect (telling kidneys to retain salt, and hence more water during the internal kidney re-absorption process). I believe in US fludro is "authorized" for orthostatic hypotension and orthostatic intolerance amongst other things... so a doc doesn't have to stretch themselves "off label" if you've got those indicators documented. I know when I mentioned fludro, one doc or assistant immediately said "for Addison's?" so they might get caught up on that (which happens to be something perhaps wise to screen for if you have any supporting clinical signs, BTW).

NCS is NeuroCardiogenic Syncope (fainting). Basically, having your BP drop and then fainting. dinet have a great page on it. I've fainted just a few times... I get pre-syncope a-plenty though. Not sure if it needs to be frequent to qualify for NCS. I've heard the BP drop part called NMH (Neurally Mediated Hypotension) too... not sure if that's same as Orthostatic Hypotension... maybe one is a "diagnosis" and the other a mere "sign" or "finding"... docs get finicky with that stuff!

I have hypotension and compensatory tachycardia but my cardiologist says he wont try fludrocortisone as my aldosterone levels are normal. Is this relevant given what has been said above?

Also, what is NCS?

Some of my visits to Prof Mathias have been brilliant, others disappointing but usually because I have built up my hopes too much whilst waiting for the appointment. He certainly knows far more about POTS than any of the doctors I have seen closer to home and he was willing to listen to me and my ideas.

Flop

One thing that worries me is that in my consultant's initial report he noted an episode 5 minutes into my tilt table test where I almost passed out. There was minimal record of this as the BP monitor they were supposed to be using wasn't working and the nurse just took my BP every few minutes and not at the time at which I was feeling so wretched. (3-5 mins of standing is my usual limit before feeling awful so the test was consistent. But his latest report just says "tilt table test without syncope" alogn with the tachycardia and hypotension. I've been wondering if I should have another tilt table test. I suppose I feel a bit diffident about approaching an expert like Mathias.

Thanks everyone.

Prof. Mathias has an incredible bio !!

Flop, it's amazing you can make such a long trip to see him. Must be worth it.

Thanks PrettyinPink and Flop. Helps to have feedback. Have written email to consultant asking for information about his change of plan.