Autonomic Dysfunction/NNH/Prof Matthias/POTS

[trekster]

You can get high bp with pots as well as low bp.

[reet]

Ta trekster.

I know I do have orthostatic intolerance so that makes sense. I liken the feeling to shock. I don't know if there really is a low blood volume issue though I reckon probably so, but I've wondered whether high BP is just a "fix" for low volume. I gave blood once, years ago, when I had been well for a long period. BIG mistake. Felt like I was fainting while I was lying down & took 2+ hrs before I could be moved to the car & taken home. Next day off work. I'm not a wuss or anything it just made me really ill. Anyway that's what makes me wonder about blood volume.

I've coped this long & it's been a lot worse so I guess I'll just keep on coping. Not really worried. I manage it by lying down most of every day. Not ideal but doubt there's much else on offer here.

[jax]

Hi I haven't been officially diagnosed with POTS and only score 9 out of 15 on the auntonomic
scores with Prof G. I have HMS/EDS3. I have intermittent bouts of high blood pressure mixed with much lower
levels of blood pressure too! I am prone to anxiety (no kidding) so not sure if the high blood pressure readings
are to do with that but I've wondered why it can be high and then I go to the docs sometimes and it's really
low.

J

[jax]

sorry I meant to say 9 out of 30 score on autonomic dysfunction.

J

[louloutinks]

NHNN today for results. Have got pots for def on TTT with vasovagal syncope. They have given me fludrocortisone but said they do not give beta blockers to slow the heart rate. I have seen a few people on here who take these though so am confused.

My heart rate only rose to 126 on the 60 degree TTT but rose by 49.....but was up to 173 on the 24 hour tape. No evidence of cardiovascular autonomic failure - what does this mean?

They also have asked me to go back to the support group at NHNN - does anyone else go here at all?

Too much like hard work travelling to London to sit gassing about pots when you have this website lol!

[Fluffym]

hi louloutinks,

Just wondering how long it took to get your results from the autonomic tests. I was there 3 weeks ago and have not heard anything yet.

Cheers

fluffym

[sheppeyescapee]

Got my follow-up at the nhnn in July, I've been taking the fludrocortisone since October and haven't seen any significant improvement. Am doing all the self help stuff too. I've noticed a huge increase in headaches in that time though. Hoping they have any other ideas to help.

[louloutinks]

Hi Fluffy

I had the tests last October and have just had the appointment - there is a long wait. I didnt receive my letter from them in between either but I must ask them for a copy. You should have a follow up app made for you by now so I would remind them.

Hi sheppy. I am worried about these meds as I have chiari and they can increase ICP. I will take them anyway in the hope of feeling better but shall haved to call them if it gets too painful with extra headaches on top of what i already get! Did they not offer you beta blockers either?

[sheppeyescapee]

No, fludrocortisone is all they gave me. Will see what they suggest when I go for my follow-up. Still very tachy a lot of the time. When I went for my most recent chest surgery they were so concerned about my irregular heartbeat that I had to have an ECG at my pre-op.

[jax]

Hi not sure why they don't prescribe beta blockers - perhaps because they lower bloodpressure
and if it gets too low then a side effect is one can pass out? Maybe you could talk through with your GP.You
can get lower dosages. They can increase fatigue so you can talk through with your doctor.

j

[bendyneck]

Hey guys, just had some weird symptoms in the night and would appreciate some feedback, it freaked me out a bit!

I woke up in the middle of the night lying on my left side with palpitations, sweating and a weird feeling like I was going to faint. How can you wake up feeling like you are going to faint?
The left side of my chest felt compressed and once I rolled onto my back I started to feel a bit better. Is this yet another sign of Mitral Valve Prolapse or is it Vagus Nerve Compression? I have read that the vagus nerve can be compressed in this position. It felt more like my heart was under pressure. Confused and a bit panicky, I'm still getting the feeling like I'm skipping heart beats in my sleep. I am still waiting for my appointment at the autonomic clinic, I worry something serious is going to happen before I get there.

Sorry, I'm writing this at 1.30 in the morning so it probably all sounds a bit far fetched!

[louloutinks]

Does anybody else go to the autonomic unit to the aftercare meeting to discuss diagnosis and meet others with pots?

Bendy, I dd at one point get woken up with palpitations and not feeling good but I do not have an MVP. Sorry I can't be of more help.

[Spireite]

Yes Bendyneck, I used to wake up in then night with a variety of similar symptoms. It was more often lying on the right which gave me the problems. I used to have alsorts of being stabbed in the heart with autonomics sensations. I think they stemmed from a loose spine, ie neck, thoracics and rib joints.