Pots With Constant Dizziness

[avidita]

Hello everyone:

I am sorry to post a new question so soon, but I am really desperate right now.

My major symptom of POTS is dizziness. When my symptoms first started in Dec of '06, I couldn't get out of bed, felt extremely dizzy and nauseous, but after stopping Yaz and taking 1/2 of the .25 Xanax 2-3 times a day I improved over a few months and although I wasn't feeling super, I was pretty functioning with the occasional bad dizziness/nausea, which Xanax and sleep pretty much took care of. Fast forward to Dec '08 when I got my molars extracted and the same constant dizziness came back, it improved a little over time, but I was put on Atarax in July, b/c the dizziness/nausea got severe again. Atarax works fine, but it's not a long-term solution. I was only taking 1/2 of the 25mg twice a day, so I decided to stop it and the dizziness/nausea came back big time (like back when my symptoms started), it only mildly improves when I lay down and it's really bad when I sit down. Standing and walking doesn't make it worse, but it so bad to begin with that I can't stand up much anyway. I am honestly at my wits end and I feel I am never going to get better. I was optimistic until last Dec, but now I really don't see the light at the end of the tunnel.

So, here is my question. I did a search about the constant dizziness symptom and came across some posts of people who have gotten better. Can please anyone who has gone through what I'm going through and has improved post a reply to my posts and let me know what has worked for them. I really need to hear from people who have improved to a functional level (I'm defining a functional level with something as little as holding a part-time job and having a family - that is a dream). I know people get worse, etc. and that is scaring me A LOT, so I want to hear from those who have gotten better. PLEASE.

History, if interested:

Dx POTS Feb '09 tilt table test

Normal tests: complete ENT workup (except for a VEMP test, which ENT doctors are telling me doesn't explain my kind of dizziness, plus the ENT medication didn't improve me, so I tend to believe them); MRI; Tyroid; EKG; and some others I cant remember

Abnormal tests: TTT, minor Tricuspid valve prolapse

Current meds: 1/2 of 25 mg Atarax 2x day;

Past meds: Tried Topamax, Effexor, Lexapro in 2007 - didn't work. Nothing for POTS.

[MomtoGiuliana]

I had periods of constant dizziness in the past. I know how awful it is. The only thing that helped was hydration and extra salt and adding a little more fat to my diet. Sometimes it only helped a little though. It is also possible that an SSRI helped. I took a low dose of prozac for a couple of years and during that time got slowly better. Dizziness is rare for me these days. I work full-time and consider myself recovered. I do have flare-ups, but nothing as severe as my initital symptoms were.

[Mrs. Burschman]

Post away! That's what we're here for. We don't count.

I'm more likely to feel dizzy the worse my POTS symptoms are. And my POTS symptoms have come and gone. Better sometimes, worse sometimes.

Amy

[yogini]

Dizziness was by far my worst symptom. I don't think there is any med to treat it. If you find something that helps your heart rate and blood pressure, that might help. I went through the whole inner ear investigation too, and vestibular rehab, but it turns out my symptoms were from POTS. I am MUCH better now than when I first got POTS. Have you tried betas or midodrine?

[avidita]

Thank you SO much for the responses! I am glad to hear that people have managed to get improve their dizziness!

Yogini, I have not tried ANY POTS medications yet. I tried salt loading some months back, but only made me feel terrible. Atarax or Xanax take most of my symptoms away. Problem is that they are not for long term use. I am very hopeful that once we try to treat POTS pharmacologically, there will some medication that will give me a similar relief. Anti-depressants maybe.

Thanks again!

[ramakentesh]

God yeah! For like 10 months at a time - daily, constant, irritating, horrid feeling dizziness.

Only thing that has helped for me is licorice and alcohol. All the meds I was given made me worse rather than better.

Dizziness = cerebral hypoperfusion. So anything that icnreases blood flow or pressure to the brain will improve this symptom - licorice being good at providing a relatively quick spike in BP.

[ramakentesh]

If Xanax works for you how does alcohol effect you?

Im also a rare case in that all Gaba drugs make my POTs symptoms MUCH better. Including alcohol and Kava.

I was so impressed with Kava's results in my case I advocated for its use to many doctors.