Chronic Dizziness?

[Nikki]

I was just wondering if anyone on here has chronic dizziness with their POTS. I hit my head years ago..and I was always a little light headed from time to time but it was never as bad as it is now. I would say since October of 2009 (when I went to the ER cause I was super dizzy..) my heart rate and BP were all over the place..Later in the month I was diagnosed. My cardiologist seems to think that my dizziness is a mix of POTS and something else going on from when I hit my head. It was much more manageable before..Now I hardly ever get out because even a car ride makes me feel horrible.

Another thing is, the doctor said the POTS symptoms should go away when I lay down..but when I lay down my heart rate and blood pressure are STILL all over the place..so in my mind, it makes sense for me to be dizzy all the time because my body is always out of whack..

I was just wondering if anyone has gone through the same thing and did it get better? I know some people say symptoms could go away (or at least ease up) after a year or two..and it hasn't even been a year for me yet and I'm just worried it will never go away..

[Christy_D]

My son takes fludrocortisone for his dizziness. We had to find the right dosage, but that pretty much takes care of it. Now he only gets dizzy a couple of times a day. Do you take anything for the dizziness?

[ramakentesh]

99.999999% of patients...

[Nikki]

Right now I'm just taking a small dose of Pindolol to slow down my heart, which seems to help most of the time. I was taking Florinef, but along with my blood pressure being low I also get spikes..and while I was on Florinef, the spikes were way too high so my cardiologist didn't want me to take it anymore..

I'm really hoping it just gets better with time.

[mynagirl]

My main complaint for years was just "dizziness" in the mornings after I woke up, worse the more I moved around. It was treated as migraines and then inner ear, which are both still likely factors on top of the POTS. (I definitely get headaches from some foods and I definitely have a vestibular-ocular-reflex issue according to a vestibular rehab specialist). Is yours lightheadedness (where you feel a little oxygen starved) or vertigo (where the room spins)?

Lately mine doesn't always go away immediately with laying down either, although a good nap usually helps a lot .

If your cardio doesn't think it's purely POTS, it might be worth it to get vestibular studies.

[yogini]

My main complaint is dizziness too. I was told the same thing about my symptoms subisiding after lying down, but I know now that is not the case. I went through 3 months of vestibular rehab before figuring out my dizziness is just POTS!

[Nikki]

Well, I have been diagnosed with migraines (before the POTS) and they seemed to think that all my dizziness was from that. I never get headaches, but I do have the vestibular/basilar migraines. My dizziness is more of an oxygen deprived feeling, I would say..cause when I sneeze/cough/laugh too much it definitely gets worse..I do have the occasionally spinny feeling but it's mostly just plain dizziness. I guess it's hard to tell what is coming from what lol. I have had my ears checked very well. Had TONS of tests done with that, so anything ear related is pretty much ruled out now. I'm going to make an appointment with a new neurologist and see if they can help me at all.

Thanks for the replies.