Well It's Official...i've Got Pots :)

[hholmes13]

I finally got to see the neuro doc today. Big surprise, I've got POTS. It was funny because he seemed almost surprised at how different this 2nd TTT went. I was like seriously? Why on earth do you think I harassed you for a beta-blocker so much?? I couldn't stand having my hr jump up over 150 every time I walked up some stairs!! Anyway, it does feel nice to have an actual diagnosis even though I feel like I've known for quite awhile already.

I'm actually seeing a medical geneticist tomorrow to talk about possible EDS or other connective tissue disorders. I've got quite a few of the symptoms (especially hypermobility) and have started having a lot of issues with joint pain. He told me to start taking Aleve and if that doesn't control the pain then we can send me to a rheumatologist. I think we may try to rule out any auto immune stuff as well. Hoping to maybe get some more answers.

Only frustrating part of today's appointment...neuro doc had no suggestions for things to try to make me feel better. The tachycardia and syncope are pretty well controlled with the nadolol and midodrine. I'm also still drinking lots of fluids and salt loading. However, I am dizzy 24/7 unless I am laying down. (It doesn't go away sitting anymore.) It's making me so nauseous that I've lost 20 lbs in the past year. He is baffled as to why I feel just as light-headed with normal bp readings as I did when I was really hypotensive. (Reminds me of a thread that was just on here where we talked about bp readings not necessarily measuring perfusion to the brain.) He didn't really have any ideas for meds to fix being dizzy.

So...here's the million dollar question: any one find anything that works for them to take away this awful dizzy/foggy feeling? (Meds or supplements...I'm open minded. )

[ramakentesh]

bad luck with the diagnosis or good luck I guess if you wanted a name for your ailment

In pots the problem effects cerebral autoregulation so you can be dizzy with reduced brain blood flow even when HYPERtensive. If your doctor wants to confirm this they can actually just do a flow measure of the carotid artery on tilt via ultrasound.

I had the dizziness the worst as well although there are close seconds.

Licorice extract and tea helps me dizziness and so did florinef probably slightly better. Some do well on midodrine or similar but iwasnt one of them. mestinon can help a bit too.

[Wendy C.]

Congratulations! J/k... Magnesium has helped me with the constant dizziness. I don't remember the exact details, but it has something to do with the muscles in the inner ear and behind the eyes being too tight if you have a magnesium deficiency, causing dizziness/vertigo, and magnesium helps to relax those muscles. (it helped my tight neck and back, too) I used to have quite the problem when moving quickly from one position to the next, shopping in a place like Walmart and looking up to see which aisle to head to next, or while looking up from my plate to the tv. Since taking magnesium 3 times daily, it has gone away.

[Chaos]

Congrats seems like a funny word to use in this situation...but CONGRATS on finally having documentation of what you've known for a long time.

Must be all those POTSY thoughts we sent your way. LOL

[CC101]

Well I am happy to hear that you have received acknowledgment of your condition. I too live in an area where the doctors have no idea about my condition and am overwhelmed by the idea of educating them (like they are going to listen to me type of feeling). For the dizziness, I have it EVERY time I stand up. My cardiologist wanted me to wear compression stockings 24/7 and said they should help with the dizziness. Well, I wore them for a few days and somewhat noticed a difference, but I did not wear them long enough to actually tell. I did not continue to wear them only because the closed-toe hurt my toes so I have been meaning to buy open-toe compression stocking but of course have not gotten around to it. I would say give them a try, I have heard compression garments help a lot of POTS patients. Best of luck to you! =)

[hholmes13]

Thanks for the ideas everyone! While I'm not excited about being diagosed with POTS and EDS, at least it confirms what I've suspected and gives me affirmation I'm not nuts! Looking forward now and going to try and stay positive and pull out of this bad spell. Now I know for sure what I've been fighting with for the past year and can hopefully start to improve again.