Timbo

You ought to see my dentist. I had a root canal done a couple years ago and I didn't feel a thing.

Jessica, What city in the DC area do you live in? I am from Gaithersburg, MD Tim

Jackie, Anxiety is a big symptom for me too. It ran my life for the first four months with POTS. I worry like most POTS patients do about Shy Drager and similar fatal disorders. I guess it is going to take a few years for me to really calm down, because then I will know I am not dying. I have not taken any medication because the doctor at the VA won't prescribe any and quite frankly, I don't think I need it right now. I have learned to control the anxiety to a large extent. I can go weeks without any anxiety and then I will get a weird neurological symptom like myoclonus and it will freak me out for a while. Coming here and hearing that people have the same symptoms, even if they are not recognized POTS symptoms, makes me feel better. I think there are many symptoms most of us share that are not recognized as POTS symptoms.

I have tinnitus. It started a couple months back. Everyone gets it occasionally, but I get it more often now than I ever did.

My endo does a blood test for Cortisol and that is it. I have Addison's Disease all my cortisol is synthetic (pill form). What is the two part test?

Thanks for the answers guys. I am started taking glucosimine and chondroitin this morning. We will see if it helps at all. The pain is more nagging than hurtful. I was a tad concerned about rheumatoid arthritis since I have an auto-immune disease already. Hopefully this is a POTS thing.

I started getting some joint pain recently and I am trying to figure out if it POTS or arthritis. The pain is in my fingers and elbows. When I wake up in the morning my fingers are stiff. After an few minutes to a half hour the stiffness gets worked out and disappears, but the pain remains. Has anyone had a similar experience? Thanks, Tim

Last night I was in bed and my right leg and part of my left has this weird corkscrew sensation in it and jerked pretty hard. Neither limb lifted totally off the bed but it scared the **** out of me. I am going to make an appointment with the neurologist at the VA just to have all these movements looked at. Thankfully I have been extremely calm through this, probably because I do not have any other symptoms of a systemic disease other than these involuntary movements. No problems with weakness, gait, ridigity or stiffness, no problems voluntarily moving my arms or legs or any part of my body. Maybe I will post a poll and see how many of you POTS people out there have these problems.

It could also be this lipoma (benign fat tumor) I have, its close to the spinal cord and I am having it removed.

One of the side effects of Florinef is hypokalemia (low postassium or in otherwords an electrolye imbalance).

Sometimes when I am in bed and trying to go to sleep, parts of my body start to jerk periodically. The jerks are mild, its like one muscle contrats and releases, not a whole limb. I also have noticed that I have more twitching than normal over my body during the day. It's nothing alarming, but I do notice it. I was wondering if anyone else has had one or both or these symptoms? Thanks, Tim

I am having a lipoma cut out in a couple weeks. Thanks for the info guys!

I had several endoscopies for an ulcer I had. My mother has a few from the same doctor and we all woke up in the middle, gagging on the scope. Make sure you get a doc with a decent anesthetist.

Thank you VERY much briarrose! It is indeed florinef! That saves me an hour trip to D.C. to fix the problem. I guess the VA is going generic!

You should try a recumbent exercise bike. Its the kind of bike where you are sitting down with a backrest. It is not like sitting up on a standard exercise bike. It might help bring your heartrate down some. http://www.fogdog.com/product/index.jsp?pr...19804&cp=976898

Nina, Here are a couple pictures. The pills have what looks like a reverse "P" or the number 9 on one side and the number 997 and the fraction 1/10 on the other side. Do your pills look like these and have the same markings? Thanks, Tim

I just got my latest shipment of florinef from the VA. I am used to small, round white tablets. This shipment I got yellow oblong (football shaped) pills. Has anyone ever seen florinef tablets like this? I am not taking them until I confirm they are indeed florinef. I have a backup supply to keep me going for a few weeks, just in case.

I saw a cardiologist and he said I had heartburn. This is the same cardiologist that told my father he was fine a few months before his heart attack. Needless to say we are never seeing him again. HOWEVER They are much better at Childrens Hospital. If you discuss the possibility of it with him, he can do an EKG test with deep breathing to see if she has dysautonomia. It can at the very least rule it out. That is how they figured out I had a form of dysautonomia. Further testing brought the POTS diagnosis.

I can't afford that drug. That is ridiculous. Drug companies sicken me. I am stunned that insurance would even consider paying for it.

I had slightly high pressure before I got POTS. Now its about 105/70 most of the time. Many POTS patients report swallowing problems at first. I lost weight when I first got POTS symptoms because I was scared into eating healthy, a habit I have kept. I get action or intention tremors in my fingers which comes and goes. Enjoy the fact that you can eat salt again. I went through the same thing. My doctor told me to cut the salt and then when I got POTS I was told to add more salt to my food. Being scared is normal with POTS, remember anxiety is a symptom. That anxiety stems from you worrying about having a more serious illness. We all deal with that fear at one time or another. I went from a BP of 125/95 to 105/70 in a month. I was diagnosed with an EKG (deep breathing) as well. I did not have the tilt table because I do not have dramtic orthostatic hypotension. You are going to go through a lot of emotions for a while but you will learn to accept and live with the condition, even though none of us want to.

Interesting. I will let you know how things turn out. Thank you for sharing that information with me.

I have dropped 7-10 pounds in 2-3 weeks without even trying. I had the flu and stopped weightlifting. My appetite has decreased some since the flu. I am wondering if there is any possibility this is a POTS thing or its from losing muscle mass due to the flu and cessation of weight lifting.

I can't make any promises but I am working on a foundation my best friend works for. I might be able to get a small donation ($500 to $1,000). If I can secure this, where should they send it and is it tax deductable?

I am cold in the winter, but summer is no problem, in fact I do way better in the heat than I did before POTS.

I wonder why this isn't a recognized symptoms of POTS. My guess is that it would be considered tachycardia which is already a recognized symptom.