futurehope

Congratulations!

Dan, Great news! Does that mean that they will be evaluating you next Wednesday, February 25th, or on March 3rd?

Runnergirl, I'm one of the people on this forum who has had the initial workup at NIH (back in January). You may want to do a search on NIH to find out the info already written here. Also, yes, NIH could give you a lot of information when they're done (after the 1 week protocol) but they will not treat you. You still have to find a doctor to help you, but of course, having the info from Dr. Goldstein is a great start.

Runnergirl, I used to be very active (though not like you are) before I came down with this. It sure seems that when they rule out all other possible causes of your body acting strangely, it comes down to autonomic issues. Yes, I am definitely different on different days, but in my case I can usually attribute it to doing too much the prior day or taking a certain medicine with a stimulant in it, or eating too much chocolate, or eating a large meal or the hormones being off. I was diagnosed with a tilt table test. Maybe you should request that test? If you do turn out to have autonomic issues, they certainly can be unpredictable. But you learn to live with it and do what you can. Welcome to the forum!

I take evening primrose oil and cod liver oil. I used to have dry mucous membranes all winter where the inside lining of my nose would always be hurting. The above seemed to solve that problem and I'm very grateful. Also, I don't seem to notice my restless leg syndrome anymore, but I can't be sure of exactly what I did to help that. I know I'm going to stay on the above because I know the fatty acids are an important part of our cell membranes and we tend not to get enough.

I'd be careful before taking in too much fluid. You could actually kill yourself by throwing your electrolyes off. I thought 8 ounces/hour or eight glasses a day was typical.

Jackie, "Praise the Lord, the source and fount of our strength!"

My neurologist only became interested in underlying reasons (and ruling out possible causes of POTS) when I mentioned it myself. I said, "I'm going to my endocrinologist. What tests do you think she could do to rule out causes of POTS?" As it turned out, my endocrinologist took one look at the list of 9 tests that my neurologist had suggested, and decided I should do maybe 3 of them, my usual tests for level of thyroid hormone and a test for pheochromocytoma - a kind of adrenal abnormality in which large amounts of epinephrine are pumped into your blood. She really doesn't think I have that, though. Really, my neurologist should be doing the tests himself to rule things out. Why am I telling HIM that that's what I want?!? It could be that there are so many DIFFERENT organ systems that could be malfunctioning and causing POTS that really the neurologist does not, and cannot, have all the knowledge required to determine the possible causes. I guess that leaves it up to me, and reading, reading, reading, through this forum and everywhere else to figure out what MY underlying cause might be. Also, when I have my NIH study completed, I'll have a clearer picture of which parts or systems of my body are malfunctioning. Until then, I tell myself that people often get things like chronic fatigue, fibromyalgia, multiple sclerosis, lupis, etc. and don't have the foggiest idea WHY they got it. Though, if physicians can find an underlying cause to our dysautonomia, it COULD help determine our treatment plan. Remember, some people on this forum have improved quite a bit even though they never knew what brought on their dysautonomia.

Well said, Earthmother! I like the idea of focusing on the NOW. Great advice. Our thoughts tend to run away and take us down the wrong path. Ethansmom, whatever is going on at the moment, know for sure that it will not last. Nothing stays the same. There are better times ahead. I guarantee it.

Marq, I'm sorry I mixed you up. What I was trying to say was --- there is a DIFFERENT condition which is a form of TUBERCULOSIS which is called POTTS with two T's. It has nothing to do with the POTS on this forum. POTS on this forum stands for Postural Orthostatic Tachycardia Syndrome. POTTS (the tuberculosis) is named after a doctor I think. Sorry for the confusion. As for your daughter's scoliosis, I really don't know of any connections to our POTS.

He's in my prayers.

Momtoguiliana, Your younger sister's internist mentioned POTS as being associated with tuberculosis. I just wanted to mention that someone in my family had had a form of TB called POTTS which involves the spinal column. The patient's spinal column was deformed since contracting the disease in childhood.

Since I've had POTS, I dread taking Tylenol as it makes me dizzy and sleepy. I now use ibuprofin.

I've had a few endocscopys one of which was after my diagnosis of POTS. That went fine. I was a bit out of kilter after the anethesia (twilight sleep, I think) and it took a while to recover and I couldn't move too fast or I would get nauseated, but all in all, it was fine. For the colonoscopy, I've had 2 of them, one after my diagnosis. When drinking the "stuff", I stopped when I got nauseated, because I knew that I'd throw up and that would ruin things. I figured I didn't have to drink the entire thing if my body was already so full of the stuff that one more sip would get me retching, so I stopped. I react very poorly to stressors of this sort and wound up in the bathroom many, many times even up to the procedure, which luckily was at 7:30 AM (no time to think). I was too weak to stand when I got there and I had them put me on an IV ASAP and I told them why. I did fine with the anesthetic, but as usual, it took me awhile to get over it, not to mention the bloated feeling I got from them having pumped my gut with air (I think) and not having any food in me for two days. It took my gut about 2-3 days to recover. I felt that both procedures were necessary in my case. As a matter of fact, they found something in my stomach that was a slow bleed caused by an arterio-venous malformation which they cauterized. The internal bleeding could not have been helping my POTS at all! I would just discuss your concerns with your doctor ahead of time so he knows what he's dealing with and everything will be okay.

Amen, brother and thank God there are people like you out there taking care of your wife. God bless you!

EM, When I was very careful and ate only healthy foods and stayed away from the common food allergens, I found the alternative diet did help me feel better but it was rather pricey. I was working full-time at the time I was eating that way, but I still felt like I was spending quite a bit of money on the alternative foods. Since I no longer work, I have the motivation to try and go on my "healthy" diet again, but I would need to know ways to keep the cost down. Any suggestions? Thanks. Also, what tests were used on you to determine your food sensitivities/allergies?

I've been diagnosed since about 1 1/2 years ago. Luckily, when this condition became bad, I went to a neurologist who knew what was going on. I do not know if I had a sudden onset from a viral infection, or just a very slow (barely noticeable) deterioration, or episodes that have come and gone with this latest episode staying with me. I'm still of the opinion that I will be much better as time goes on. Once the doctors get a handle on the potential CAUSES for my current condition, then they will have a better idea what may help. I'm currently in the "let's figure out the potential causes" stage of this problem.

Justme, What a relief to hear someone say what I think! The doctors know there is something wrong with me but are unwilling to write anything to Social Security relaying how the condition makes it impossible to work. They just don't know the impact. I suspect not enough studies have been done on the CUMULATIVE effects of activity on our stamina, as well as the cognitive effects of being overly tired. I imagine, in time, more will be understood about the effects of autonomic dysfunction. Until then, I UNDERSTAND, and I'm sure others in our shoes do as well. Thanks for sharing.

Dan, To what do you attribute your improvement on the TTT?

Hi Dan, It sounds like your heartrate and BP were very good during the TTT. That's great! I hope your throat spasms decrease as well. Knowing what you do now, would you ever recommend that someone start on tranquiliziers if they haven't already? Everyone seems to have different ideas on this.

I think with this ailment, you find out what you're really made of since doing everything is so much more difficult. It takes sheer will to get out of bed when you're body gives you no help at all. The good news for me is I'm quite motivated to get out of bed (I do have 5 animals that need me), so I use my willpower (and I pray a lot too). Then, when I want to do other "normal" activities, like going to a doctor, that takes strength of will as well, since I know I'll feel worse when I have to go and sit there waiting to be called. Most other normal activities take all my will as well, like going to church and sitting there (though, I want to do that as well), and exercising. When I still had my job, it took everything in me to get to work, stay there, and try to perform my duties. I thought I would crack up if I kept that up, so I'm trying to get disabiity now. I do not try to behave as if I'm normal anymore. I've adjusted to the fact that I'm not normal. It's just the way it is. So, I've decreased the demands on myself. I tried pushing it and pretending that nothing was wrong, and that sapped all the life out of me all together. So, what I'm saying is, I'm not working, I do what I can, and I've adjusted to my life with this infirmity. I can empathize with another when I hear the difficulties that they face. I mainly try to keep a positive outlook on everything and not let this "thing" ruin my spirit. That's the key, I think. Your body may not be working perfectly, but it doesn't have to ruin your spirit.

Thanks, Earth Mother, you're so quick. I couldn't find the whole article, only the abstract, so I guess my computer skills are what they could be. Thanks, again!

Do any of you have the link to the article written at Mayo Clinic (whose authors include Dr. Low) describing the impact of postural tachycardia syndrome on the quality of life? I currently have the abstract, but I know I read the ENTIRE article someplace. Does anyone have the link? I would appreciate it.

Ling, I have a problem with both getting to sleep and staying asleep. I wake up a few times a night. This is one of the symptoms that I will definitely need help with.

I just saw my neurologist today and he said I have "Hypertensive POTS". He says at first he didn't understand the HIGH blood pressure, but now he realizes this is a subset of POTS people. He said my body is compensating for the orthostatic stress by increasing my blood pressure too much. I was going to begin beta blockers today, but I will be holding off as NIH just emailed me and said they might be able to take me next Wednesday (for their study) instead of Mar 22. Also, with my kind of POTS, midodrine is no good since it migjt raise my BP too much.