Dizzy All The Time While Standing Or Sitting.

[ana_22]

Hi.

Dizziness/light headedness while standing/walking/sitting is one of main symptoms. It has been constant since all this started 4 months ago, it actually kicked off the whole POTS thing, cos if i had POTS before the dizziness i certainly didnt notice it! . The only time the dizziness doesnt happen while im lying down.

I have had a thourough ENT work up by an ENT specialist. I recently went to a neurologist who diagnosed vestibular nueritis and recommended i go to vestibular rehab (which im starting this week) AT the time i asked him whether he thought it was POTS and he said no, a few days later i had a TTT which confirmd POTS.

I dont think the dizzy light headed feeling is related to blood pressure as i have taken it while im standing and of course feeling dizzy and it ranges from 105/75 - 120/80.

So my questions are: Can POTS interfere with our vestibular system? has anyone else been non stop dizzy and had it get better or improve? has anyone done vestibular rehab?

Also just on a seperate note i was thinking, i measure blood pressure with the cuff around my arm (like most ppl would), how do i know there is sufficient blood working its wayup to my head and brain!? could this be my problem!!!??? I ask this as other minor symptoms are tingling lips, a pressure feeling in my nose that comes and goes and my ears sometimes block like they would if your driving up a mountain (this last thing only happens if im standing for a long time)

I hate feeling dizzy, as i guess most ppl would! i feel like if i could get this symptom under control i could acctually function with POTS and maybe work or go to school or something!

thanks in advance for your replies guys!

[Ernie]

Hi,

You need a doppler while standing or sitting to measure the blood flow to your head.

[HoudiniCat]

I?m sorry you?re experiencing this constant dizziness. All of this started for me with a faint and fall and I woke up with dizziness/light-headedness almost 24/7. There was dizziness when walking, standing, sitting, even laying down sometimes. I think I had every test in the book done and they finally came back with a POTS dx. I swore it was an ENT thing, because my balance was off and I got that ear popping/ringing sensation a lot. Had a lot of tests done and for me, it was just the POTS messing with my vestibular system (not a separate issue that they could find). I also had a lot of vision problems, had a bunch of tests done there ? and nothing. GI problems, nothing.

Sometimes when I?m symptomatic, I can connect it with a reason (low BP, etc.) but other times not ? my BP is fine and yet I?m as dizzy as can be (definitely not enough blood flow to the brain).

Are you on any meds? If so, sometimes it takes a while for them to kick in and give you some relief. Other times, they have to be adjusted. From reading these posts, it seems that there are almost as many different treatment options as there are those with POTS. Hope you?re feeling better soon.

[helen.t]

Hi, I can relate to all that dizziness too. It has been a major problem and hindrance to my health. i was dx with Benign Positional Vertigo a few years before POTS. Now dx with Vestibular Impairment and Migraine related vertigo. I tried the vest. rehab exercises last year and it made my chronic migraines intolerable and I was not able to function at all. I have been given Sodium Valproate to control the migraines so that I can have another go at the vest. rehab. exs again but I can't say I'm looking forward to them. Everyone is different though and I have heard they can be a good success. I know I will have to try them again to see how they go but at present I'm still getting migraine. The whole thing for me is so weird too because I have been told I have had POTS the majority of my life and migraine for a good part of it but the extreme constant dizziness only began after a neck injury with a tooth extraction. I also started to get all the ear problems etc too at that time. The whole thing about POTS is that the blood is pooling to the lower half of your body and I think in my case my veins are too elastic so it seems reasonable to me that it would affect the vestibular system. I hope you get on ok with the exercises! best of luck Helen

What is a doppler test Ernie? It sounds like something I would like to get done.

[starry16]

I can also relate to all the dizziness. For a long time I thought that it wasn't the POTS causing it because I know what it's like to be lightheaded like I'm about to faint, and this dizziness felt different (though definitely still distinct from vertigo-like spinning). I insisted (and my doctor at the time agreed, since he knew nothing about POTS) that it couldn't be fainting or POTS related because my BP was normal. I was mis-diagnosed with BPPV and did vestibular rehab which (for me) was a waste of time and money because it was the POTS causing the problem.

I think the last part of what you describe is most likely what is going on. I have asked my doc about this numerous times (he's a POTS specialist) and he says that this is a disorder of blood flow disregulation - so whether due to pooling or just improper regulation, blood is not in the right places at the right times, including in the head, thus causing dizziness.

I'm sure it's possible that you have a co-existing vestibular disorder, but don't underestimate POTS' ability to make you feel this way...

Paradoxically (perhaps) I have found that doing some exercise while I am dizzy like that (i.e., not sitting down and waiting it out) can make me feel better.

Good luck!