dizzyallie

Me again - I was wondering what position you sleep in?

I can't lay flat, so have a wedge thing under my head so it's raised probably 60 degrees.

I also find tho that I physically can't sit up during the night - feel so ill, like last night and head so sick!!! I can't even get the 5 metres to the toilet! Once i am in bed - i can't move put it that way

Are you guys similar?

Thankyou everyone, I was concerned because it's not always high and it was making me wonder - maybe it's not POTS?

But yes like you all - very symptomatic.

Just want things to improve so badly

Thankyou evryone for the helpful info - it's a real concern for me.

Katybug - well originally they diagnosed vestibular migraine - which I am only on 10mg propranolol at this stage. I am convinced it's this and the POTS, then the separate spinning vertigo.

I didn't know so many had similar visual probs to me - it's unreal! The dark makes me worse, patterns eg carpets, looking at books - trying to read!!!! Even typing this.

Naomi - yes, I agree with you. The vestibular system is just nasty. It's definitely changed.

Thankyou all again xxx

I have been wondering this. Yes my HR goes up standing but not EVERY time.

Sometiimes I feel so ill and dizzy yet HR can be in 80's.

So confused.

My tilt table went from 100 beats to 150 beats in under a minute.

My ears are differently a prob - but I have been thoroughly tested. I get vertigo attacks on top. But they always pop, feel full and dizziness is affected by head position also for me. I swear there is an ear element at play though.

ENT says POTS has messed up vestibular system, so am waiting for meds for POTS to see of there's a difference in symptoms. It's definitely not all POTS with me. Have strange symtpoms like intolerance to patterns, angles the tv is on etc etc.

Thanks Naomi I'm gonna buy this. Hope it's safe buying over the net - oh man I am not in the 21st century

Yes - and when extremely dizzy I find it more so. Body jerks. when standing my right leg shakes also some times.

Had me worried too but think it's all part of it.

Thanks D, Yogini and Trach - all great responses. I am seeing a holistic/naturopath gp in January for his help - I hope!

Me too Yogini, been doing vestib rehab but not noticing much I think there is definitely an ear element tho, as I have vertigo (separate to this dizziness) and head movements eg looking down, to the left etc make me much worse. Just soooo sick of it!

That's interesting about the nerve, glad they could find that for you Trach. I imagine it would be very painful

Thankyou again for the replies

Thanks Naomi, I appreciate that. I have wondered if they are linked. My ENT thinks the dysautonomia is throwing vestib system worse.

You too hey puppylove, sorry to hear that. Yes head movements are just awful. Getting a spect brain scan in new year to check blood flow.

Thanks for the reply

Hi all,

This is my first post. My name's Allie and I have CFS and after 16 months constant dizziness a tilt table connfirmed POTS also.

I know I have POTS (had suspected it all along...can't stand up beyond 5 minutes and at times can't actually get up) but I wonder if an ear element could be present also??

Do POTS patients find dizziness also worsens with any head movement? eg looking down to eat, brush teeth.

I am at my wits end and am barely getting through the day. I am awaiting medication for POTS.

So glad to have found this forum and all of you,

Regards