Is It All Pots?

[dizzyallie]

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

[puppylove]

I'm sorry you're having a tough time. I was recently diagnosed also. I have also found that sudden movements/ moving my head makes me more dizzy. I hope you start feeling better soon!

[dizzyallie]

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

[HopeSprings]

Hi there. I think the ears are somehow related. A lot of us have ear problems and the uniquely weird type of "dizziness" that comes with ear problems. There's a definite connection between the vestibular and autonomic systems. Just hard to know which is causing the problem - is the vestibular system disturbing the ANS or is it the other way around?

[HopeSprings]

Here's an example:

http://www.ncbi.nlm.nih.gov/pubmed/9674521

[dizzyallie]

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

[Dizzysillyak]

Pots is just a group of symptoms. Traditional doctors are trained to look at illnesses this way but

but holistic and integative doctors realize that symptoms are just messages from our bidies and

Will work to get to the root cause of these.

I'm a celiac with extensive damage so absorbing nutrients from food alone is impossibke. I'm still

in the process of discovering which ones I need.

My integrative doc has helped me tremendously but we're still addressing my dysautonomia, oh and tachycardia

after standing in place too long.

Tc .. D

[yogini]

I went through the whole inner ear thing - went to 3 months of vestibular rehab and then discovered mine was POTS only. But There are several people here with both POTS and inner ear. Usually POTS would not make dizziness worse with head movement - more with positional movement (standing up).

Now that you are confirm with POTS you can see if treating the POTS helps with the dizziness - that will be the best indicator.

[Trach]

In addition to POTS and vaso vagal, I found out part of my migraine pain was caused by an inflamed trigeminal nerve. The pain specialist figured it out because I had frequent left ear pain which may have contributed to my dizziness. (everything hurts on my left side - head, ear, leg, etc). A scalene block takes the pain away for approximately two months at a time. Unfortunately, the dizziness has not improved, but I hope you find an answer soon.

[dizzyallie]

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