Jersey Girl

So sorry that you have this extremely inconveneient, debilitating at times,scary condition. I hope that as time goes on you will experience some improvement, but it is definitely horrible those first few months. I hope your friends and family will be able to bear with you during these difficult times ahead and this forum is so understanding. You will need a good autonomic specialist to follow you, I believe. Keep your chin up--you can do it.

I have had reactions to so many medications but I can tolerate aspirin. I have been taking about 3000 mg/day of Bufferin for the last 2 months for a rotator cuff problem.

i can tolerate anything but the novocaine with the epinephrine. I would need to be hospitalized if I got that. I had recent cap and had no problems.

I was put on Alesse and after 2 days almost had a stroke. then I tried Prometrium (both to relieve symptoms of perimenopause) and ended up in the hospital. Two years ago I had 3 shots of Lupron to stop my periods. However, they came back with a vengeance 5 months later. SO I do'nt take anything. But around ovulation and before and at the end of my period I can barely stand up without getting extremely dizzy( even sitting up is hard).

How exciting! Good luck on your move. Hope you feel strong and not too exhausted with the heat.

I tried a few beta blockers to control my BP which was steady high a year and a half ago and could not tolerate any of them. I ended up on Verapamil for 6 months. I now have Xanax 1/2 pill which works for those occasional times it will spike. I also used to spend a lot of time in a warm bathtub to lower my pressure as well. Some autonomic specialists don't like beta-blockers.

I was advised by autonomic specialist not to have large meals. I should eat small portions frequently throughout the day. I definitely react poorly to a large load of carbohydrates. And yes I do need to eat on a fairly rigid schedule.

See if you can get hold of the book"From Fatigued to Fantastic" by Jacob Teitelbaum. He is a physician who suffered from CFS and has a clinic in Annapolis, Maryland to treat patients. OI is sometimes part of CFS. I have tried some of his suggestions in the book and find them helpful.

I also had an abnormal tilt test the first time ( I have failed 3 of them) but wasn't given the diagnosis of POTS until 1 1/2 years later. You should be off all medications for a few days before your test, not drink or eat anything the day of your test, and have a physician present. You should not be given anything to help you faint. ( as I was) You don't have to faint to have POTS.

I used to have severe pain down the left side of my entire body going down the outside of my leg which lasted almost 2 years. ( I still have some weakness on that side even now) The only time I would get some relief was from the Neurontin. The acupuncturist told me it was my gallbladder channel that was blocked and I did get occasional relief when she treated me for it. Sorry you have this pain and hope you can find some relief.

That is very interesting news. Just be careful on the cortisol because it can cause excessive weight gain, depression and high blood pressure. Keep us posted.

Neurontin was a life saver for me when I had such debilitating headaches and neck and back pain. I worked up to 400mg four times a day fairly quickly and took a long time to taper being on this med for 18 months. I couldn't stand up initally without it even when I didn't have a diagnosis of POTs until much later. I would probably still take it but it made me more tired.

Do you have any known food or medication allergies? It is possible to develop them as an adult. You probably want to discuss this incident with your physician to rule out other causes other than anxiety.

I was on large doses of Neurontin for 18 months and it didn't eradicate the pain but made it more bearable. This was after many MRI's and evaluation by headache's expert who prescribed it. It was a lifesaver for me at the time.

I was told not to drink any alcohol and I have avoided most caffeine except for a little ice tea in the middle of the day. This is not a made up illness--it is real. It's just that some doctors don't want to admit they don't know everything. I also lost about 25 pounds initially, now I wish I could take off 15. Oh well. I had three MRI's because they were so convinced I had MS. It doesn't hurt and gives you peace of mind.

Maybe you could have your medical records sent to either Vanderbilt Clinic-Dr. Robertson or NIH-Dr. Goldstein to see if you qualify for any of their free clinical studies. I felt emotionally better (reassured?) after seeing Dr. Goldstein, even though he didn't offer up much. (I haven't responded well to any of the medications that were prescribed--most of them made my symptoms worse.)

I have had that same pain in my arms and legs and face and head, for me it was worse on the left as well. It was so bad when I was initally ill 2 years ago that I was put on Neurontin 400 mg four times a day and it took 18 months for most of it to lessen to the point that I could get off the Neurontin slowly. I still have the discomfort somewhat but am taking bufferin and get massage therapy to help control the muscle tenderness and knots, especially bad in my neck and shoulders. The left side actually develped some mild numbness and weakness which has yet to go away. Swimming has helped as well. I used to wake up at night and cry it was so bad. I'm sorry you are feeling this way. Hopefully you will improve over time.

When I had my levels of cortisol and renin retested a few weeks later after initially being ill, they were normal. go figure.

My cortisol level was also abnormally high as was my renin level when this all first started. It will be interesting to see what comes of this research. Thanks for sharing.

I was hospitalized twice 2 years ago a month apart, not coincidentally I realize now, right as my period started when no one had a clue what was wrong with me. I was also treated very rudely as well I think because of the doctors' frustration at not being able to diagnose me, so my condition was chalked up to being psychological. I saw in your post that you were taking premarin. The first time I was hospitalized I had just finished taking my second pill of Alesse, a combined estrogen-progesterone pill for perimenopausal women. The second time I had just finished a week of one of the naturally occuring progresterone pills. I truly believe that these medications made my symptoms SO much worse. I'm glad to hear that you're home now. I also didn't get much sympathy or interest from my autonomic specialist either when I finally was diagnosed with POTS--I don't think they have too much to offer that's effective and they seem more interested in those with PAF.

You should have it checked out for peace of mind. Two years ago I was hospitalized when this first started with horrible chest pain--I was even given morphine for it. However a week later I was discharged without an explanation for my incapacitiating symptoms and it took almost a year to be diagnosed with NCS, when I really have POTS which was confirmed at NIH this past January. I finally got a 24 hour holter monitor this past December and have been much more at peace with myself when I do get the chest pain, which is not uncommon with POTS patients.

You could try tight fitting bicycle pants instead of support hose as well. I like Propel ( made by Gatorade) because it has vitamin B in it which seems to give me a boost. I have V-8 in the morning instead of OJ because of the salt content too. I don't know whether or not you could play (or if it would help) in a cooling vest. I admire anyone trying to exercise with this condition. You should let the trainer know too.

I know that feeling of relief when you finally get a diagnosis that explains everything. I was told I had many things including anxiety and depression which I concede I did have because I didn't have a diagnosis and I found most of my doctors pretty unsympathetic and difficult to deal with--that is called reactive depression (to an illness). I just wish there were more effective treatment options for POTS.

I was told at NIH that certain anaesthtetics would be contraindicated, but I don't know what they are. That would apply to dental ones as well. And I just generally react adversely to any medication. Yes, I have horrible neck and shoulder pain and knots also. Yes, I feel that my autonomic system has gotten the best of me at times, definitely for the first year of this illness ( I have had POTS for 2 years now and time is a great healer.) It's hard not to feel depressed when everything you try doesn't seem to help much, but it is important to keep a positive outlook and enjoy those precious moments when you do feel a little better.

I tried all the SSRI's but couldn't tolerate any of them, although I desperately wanted to , because it seemed like a good solution to me at the time. I believe they're supposed to increase levels of serotinin which is a neurotransmitter. Some of the recent literature suggests that they're not particularly good for teenagers and can have the opposite effect they're intended for on mood. Marty