MarkA

I get it mainly at night in my legs.

Yes I have it too. Occasional diarrhea from time to time. Sour Cream is a no no for me, eat it and immediately head to the bathroom.

I talk about it freely but mostly to educate people or to warn nurses prior to blood draws like yesterday. My wife is pretty well in tune to it now and can see when I get up and get lightheaded. I know what it is like not to fit the mold guys.

Have you had a tilt table test yet? I would not put a lot of faith in heart monitors. I got fitted with one that was so usless that it required me to press a button to record an event, yea that works great while you are sleeping. I just read the side effects for my Metropolol tonight, makes me scratch my head and wonder why the prescribe it to POTS patients at all. I guess you got to take it with a grain of salt sometimes. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682864.html

I have used it to control muscle soreness and GERD and it has helped. I do not think it will cure POTS or the Labrum tears in my hip but it does help with the pain. It does take some getting use to and they do hurt briefly going in sometimes but I think it has helped me.

Yes I have felt this too. Usually after a bad stand up episode.

I have been getting Accupuncture to help with the muscle aches, I also do Yoga twice a week even though my POTS doctor thinks I am nuts for doing Yoga. I just opt out when it is too much up and down. I think the Accupuncture has helped. I am always tight an my muscles never relax. The Yoga keeps me somewhat flexable. The Accupuncture also helps my GERD.

Are you on a Beta Blocker of any type? My Metropolal seems to help with these but i get them sometime with intense dreams or close calls on the road in the car. Yes they are very scary.

Good luck. My Cardiologist interned at Vanderbilt and speaks very highly of the school and hospital. Please let us all know how your visit goes.

Thank you! This is very enlightening after my recent discovery of Nitric Oxide and how it interacts and is interlaced with POTS.

Metoprolol 37 1/2 mg twice a day. Splitting tabs really *****.

I was reading the paper this moring and saw an ad for a beet extract that promised all kinds of wonderful things. What got my attention was that many of the things it claimed to help were POTS related. So I did a little Googling to see what this was based on. Nitric Oxide levels in the blood and muscles is what this seems to be aimed at. Here are a few articles that I found that sounded interesting. Has anyone else heard of any of this or anyone here with greater medical knowledge see any thing of value in this?

http://www.mensfitness.com/nutrition/supplements/supplement-guide-nitric-oxide

http://www.sciencedaily.com/releases/2012/04/120426135232.htm

http://en.wikipedia.org/wiki/Nitric_oxide

Read the section on Blood pressure changes in the article, it sounds as if they are describing POTS.

http://www.livestrong.com/article/75268-side-effects-nitric-oxide-supplements/

I am not going to rush out and try this stuff but it sure make me wonder if there is not a connection there somewhere.

I have see spray bottles with battery powered fans on them. I am leaning twords a cooling vest. I have heard the towels work good but I have not tried one. Here is the vest I want to try.http://www.coolvest.com/RPCM_Cooling_Vest/RPCM_Concealable_Cool_Vest.aspx

I am not sleeping deeply despite being on a CPAP. When I get up my muscles are just as tight as when I went to bed. I wish I could find something to get them to release and loosen up.

My legs never relax at night. I am constantly tight to the point that if I dont stretch, do Yoga and get massage therapy it wreaks havoc on my hips and back. I thought after I got my CPAP I would sleep deep enough they would unwind, no such luck. I too have the strange sensations and feelings in them. I side sleep alot too which is hard on the arms shoulders and hips. I wish I could find something to get them to unwind and loosen up.

Wow this describes me to a tee. I have always worn my emotions on my sleeve and I get extremly angry escpeially at inanimate objects. I have been described as being perpetually irratated.

I have recently started using a product called NUUN after my doctor reccommended it to me. It is supposed to have better properties than Gatorade and more sodium. It does have a saltier taste in all of the flavors i have tried and as an FYI the tablets are too big to go in the standard bottled water opening. I have decided to stick with the orange and put a shot of Manderian Orange MIO in it to ease the salty aftertaste. Here is the link if anyone is interested. My doctor found out about it because his wife is a runner and has POTS as well. http://www.nuun.com/

I do not remember my TTT taking that long. You will be strapped in so at worst if you blackout like I did you are not going anywhere. I knew as soon as they gave me the med to speed up the heart and started raising me that I was probably not going to be able to fight it off. In the past I had some episodes standing up too quick from sitting on the couch where I had to hold on to something to steady myself cause it would get black and woozy. But I usually never passed out. That was reserved for shots and blood draws. :-)

Thank you for all the responses. I too think I will have to buy one then try to get it reimbursed. Lotusflower where did you get yours? Do you like the fit and function?

Has anyone had a cooling vest prescribed to them by their Doctor? I approached mine about it and got a very vauge response.

I take Metoprolol 37mg twice a day.

Hi I am the latest to join this group. I live in Hilliard Ohio which is a suburb of Columbus. I have a great DR at OSU if anyone is interested.

Hi my name is Mark and I live in Hilliard Ohio which is a suburb of Columbus Ohio.

Hi my name is Mark and I am new to the group and do not fit the typical POTS profile. I am 54 years old and suspect I have had POTS all my life. I was just diagnosed last year after the sudden onset of rapid pulse and elevated blood pressure. I was lucky to find a good Cardiologist who listened and looked for everything and sent me to have a tilt table test. I passed out needless to say. I have always gotten lightheaded and dizzy upon standing and when getting shots or blod draws. I got referred to a really great Dr. at the OSU Ross Heart Hospital who has POTS experience and too his training at Vanderbilt. Dr. Rhodes has helped me get back in sync and manage my symptoms. I have learned a ton from this site and hope to learn lots more.