futurehope

Karen, I very much appreciate your input. I am aware that the adrenals do not address the entire problem of POTS. The doctor told me that, but... the 2 people he has helped are much more functional than before the cortisol supplementation. That's all I know. BTW, my stim test came out in the 20's. I have it written somewhere. But what is of interest to me, is that I think I respond DIFFERENTLY on different days. That's why I'm so interested in looking into a hormone link. If it were Chiari malformation, or nerve damage, I don't think I would be having these "attacks", in which I'm extremely weak, dizzy and feel dead even though I'm hydrated and I haven't taken any new medicine. Again, I very much appreciate your input and I'd like to keep in touch. Also, I do not have a thyroid. It was removed for cancer in 1972, and therefore, I take synthroid.

From the Dininissues website, if I remember correctly, if depression is the issue, they do expect that you will be better in a year and tend to do a continuing disability review sooner since they expect a recovery. IF I ever get SSDI, I DO NOT want it based on a diagnosis of depression since they DO expect you to get better. I would rather have my approval based on my dyautonomia. On the other hand, I have a friend with bi-polar, and that is another story all together. They seem to get approved quickly. And I assume they do not think that they get better as quickly. I really don't know.

Karen M. I have already had the Cosyntropin stimulation test for my adrenals and it came out normal. I do not have Addison's disease which I think is a total loss of adrenal output? But my doctor said that he has other patients that came out normal on this test, but failed the "gold standard" test (according to him) which is the insulin challenge test. Apparently, you may not have Addison's disease, but you still may have a deficiency which is causing you problems. It was up to me whether I wanted to pursue this test or not since the first test was normal. (I'll have to look up what "normal" means in terms of numbers.) I want to pursue the insulin challenge test, because, as I said, I do not consider my responses to everyday stimuli as normal and if there is a way that I can be helped, I will be looking into it. If this next test turns out normal and my renin/aldosterone turns out normal and I'm convinced that my endocrine system has been thoroughly checked, then I will pursue some other avenue. All I know now is that my endocrinologist said he is currently helping two of his patients with POTS by giving them supplemental cortisol, but he will not give the medicine until he knows there is a deficiency.

I'm out on a limb here, but I have a suggestion. Do you have any GI issues? The reason I ask is, I was having bleeding in my stomach (unbeknownst to me), and it was NOT showing up on a CBC (complete blood count) yet. But, it was discovered during my endoscopy. I was MUCH dizzier back then during the time I had internal bleeding and didn't know it. The doctor cauterized it when he was in there and told me about it. That helped with the major dizzies. Also, I recently had one of my "epidoses" in which EVERYTHING made me extremely dizzy. I think it had to do with being in a severely exhausted state from my life circumstances at the time. My body cannot cope with any "extra" stressors of any kind. That was 6 weeks ago, and I'm still not back to where I used to be before the major stressor, but I'm better. I'm also going to have an insulin challenge test which is the premier way to test for loss of adrenal function because I do not think it is normal to react this poorly to stressors. I hope you figure out what's going on. I'm still searching but I'll let you know if I find out anything.

I'm certainly no expert on the subject, but the first thing I would suspect is environmental exposure to something in your home, such as "toxic" mold from your air conditioner or growing in your walls. I saw something on TV about it the other day and I really know nothing about it, but I thought that all of us would do well to think of chemical exposures in our homes, lawns, cars, pets or on our food. I know that I have been using a 6 - 7 year old air conditioner in one of my rooms, and it certainly is spewing out allergens as I always react with allergy symptoms when it's turned on. Time to get a new machine for me!

Jessica, Maybe you could find a doctor on www.cfids.org who specializes in chronic fatigue or fibromyalgia in your area and they would listen?

Here's an update. This endocrinologist was nice enough to give me his number to be paged on a weekend , which is now, and I got to call him back. He really IS working with me and is being very helpful. I, in turn, can thank all of you on this forum for giving me enough information so I can ASK for certain tests. Anyway, my ACTH challenge was normal, BUT, he has seen other POTS patients come out normal on this test, but show a cortisol deficiency on the INSULIN CHALLENGE test. In the other patients, once the doctor saw the test results from the insulin test, THEN he prescribed cortisol replacement and they are doing well. He left it up to me whether I wanted to pursue the "next" test or not since he does not consider me one of the "sicker" POTS patients. I said, "yes", I want the insulin challenge test. I also asked if he could check my renin and aldosterone levels (thank you for your ideas) since I always feel "low" on volume and these hormones affect blood volume, and he will send me the lab slips to do that bloodwork. I will be getting the insulin challenge test with another doctor that he will refer me to at the University of Maryland Hospital. They are more familiar than he is and have the staff to help out. My conclusion: Know as much as you can before you go into see a doctor. Have a goal in mind of what you are looking for. Stay on focus and be determined. I've had good doctor response due to the above. Before I saw him I, (1) composed a write-up of the current status of my condition and problems (over one page long), (2) gave him a write up of my questions, (3) emphasized that I'm in the process of LOOKING for potential causes of my POTS (and, therefore, potential helps), (4) gave him a write-up of my medicines and of course, asked him if he was willing to help me find my cause? Like I said, I seem to be getting the response I desire. I don't know what will become of all this, but I am pursuing anything I think has potential. Will let you know what happens next. Thanks to all on this forum.

Just thought I'd let you know, the test I took which challenges the adrenals is used to diagnose Addison's disease. My test was normal. I will have the results sent to me as I do not know anything about the test and the resulting values. I will also consult with my doctor on the phone to see what, if anything else, I can test for to rule out possible causes of POTS.

Unfortunately, no. Apparently the secretary said she gave the results to the endocrinologist's nurse, but she never called me even though I called early in the AM. Well, I'll let you know. Maybe she needs to confer with the doctor before speaking to me. Maybe this, maybe that... Why can't they just do what they say when they said they would do it? Forget it. I just don't think this is a very high priority with them - getting back to patients. After all, they have their money already from my visit... Can you tell I'm cynical?

Jackie, That was great of you to write all the stuff in a post. Boy, I wish I had this with me when I went to the endocrinologist. Then I would have asked him specifically to check the renin, aldosterone as well as the cortisol, since it seems that the levels TOGETHER mean something. I wonder how many POTS people on this forum have had this stuff checked out? It sure sounds like some people would fall into the category of having low blood volume with a cause that CAN be remedied.

Jackie, I once went to a "doctor" (the out-of-network kind that doesn't deal with insurance companies and takes a lot of your money) who believed in the whole "overgrowth of yeast in your gut" thing. Of course, he said I had that. I had been on a lot of antibiotics thoughout my life. Anyway, his treatment, if I remember correctly (it was 1996), consisted of vitamins and Nystatin, an antifungal. Nystatin, I was told, could make me nauseated. Well, I did become nauseated, and pushed though taking it for a few weeks. I must say, my stomach has never been the same since. I started with the nausea then, proceeded to horrible gastritis, and chronic problems that I have to this day. I don't think my GI tract has ever been the same. My advice is BE CAREFUL with these docs that think they've come up with the solution to everyone's problems. The vitamins along with the Nystatin really irritated the lining of my stomach. He also had me taking L. Acidophilus and fructo-oligo-saccharide (FOS) a sugar that helps the L. acidophilus grow. That landed me in the ER and I had to take antibiotcs to get over the mess that caused. Yikes! On a different subject, tomorrow I'm going to call my endocrinologist and ask how I did on the ACTH challenge and also, if I can squeeze in a question on the phone, ask him about renin and what tests can be done for it? I'll let you know. I suspect my test will be normal, but we'll see.

Now this new young endocrinologist was very honest and said that he didn't know if the POTS patients he helped were low on adrenal hormone FIRST, and consequently, developed POTS, or developed POTS FIRST then, consequently, became low on adrenal hormone. At least he's willing to say, "We don't know." Anyway, the easy test he did in his office was called the "Cosyntropin Stimulation Test". He said it is easy but not as accurate in seeing "failed adrenals". The test consists of having blood drawn. Then he injected me with synthetic ACTH (adreno-cortico-tropin hormone which stimulates the adrenals and is normally given out by the pituitary), then he drew some blood again. Normal adrenals will respond to the ACTH. If this test comes out totally normal, I don't know what, if anything more, he would do. If the test comes out equivocal (not sure of the response), then he will do a more accurate challenge to the adrenals consisting of an "Insulin Tolerance Test". I'll know this Wednesday or Thursday when I call in. Earth Mother, I had to tell Social Security (my prior place of employment) that I was NOT able to return to work. I have too much fatigue, and lack of stamina at this point and I know it would be impossible for me to be employed and it wouldn't even be fair to them. For everyone else, there's no question in my mind that adrenals are affected, either BEFORE the POTS diagnosis, or after. It seems totally logical to me that when you FEEL exhausted, it's because you ARE exhausted. What you see is what you get. Timbo, the two patients he helped said they are not 100 percent better, but are very much better than they used to be. They are now functioning, contributing members of society. Maybe, your supplementation with adrenal hormone and your response is a key to all this. Maybe POTS is a separate entity, but our adrenals BECOME exhausted. I'm saying this because your supplementation did NOT take away POTS. It seems you had the Addison's FIRST, right? And were given cortisol, and then you developed POTS anyway? Did the POTS come first or later? Anyway, we're all still learning. I'm grateful for any doctors interested enough to research all this. I'll let y'all know.

Welcome, Lilbanana! Nina, today was TOO good! (I live in Maryland.) Weather like this was PERFECT for me.

I felt so bad on it that I felt like I was poisoned. I wouldn't go within 10 feet of the stuff. But, you never know. Everyone's different.

I just saw a new endocrinologist who knows my neurologist (the one that diagnosed me with POTS). Since it was my initial visit, we spent more time than usual. And, of course, I asked him how he got started on helping people like me with POTS? Anyway, I wanted to share a success he's had with two POTS patients. He has them on cortisol, an adrenal hormone, and these two patients improved tremendously. Now, he doesn't know if I would be a candidate for that. We're in the process of finding that out. And he doesn't know if it will work for everyone, or, for that matter, WHY these particular patients ARE low on cortisol or what caused the problem. BUT.... apparently, for some, supplementation with cortisol (an adrenal hormone) has helped their quality of life. I'll let you know more as I learn more. This is NOT written in any medical literature that the doctor knows of (yet). Just thought y'all might be interested.

Lalalisa, My violent episodes seem to be correlated with a very high stress time and poor sleep. Do you have any contributing factors that you know of? The only thing I can do is drink, rest, pray and wait them out. I'm actually on my way to an endocrinologist for testing (tomorrow) to see if he can figure out why I go through these "spells". They are so difficult and scary that I requested that the doctors look into all possible reasons that they occur. I wanted my adrenal output to be tested. We'll see what he recommends tomorrow. Meanwhile, hang in there. Nothing stays the same. When horrible stuff like this happens, I look at the clock to see what time it is and remind myself that in a few hours things will change.

Michelle, I've never received a notification of a newsletter either. Maybe it has to do with registration. Obviously, I'm registered for this forum, but maybe there is a separate registration for newsletters? Is that what it is? When I checked the newsletter you just mentioned, and went snooping I noticed it asked all kinds of personal information including my address. So, the newletter registration is different than signing up for his forum?

Michelle, Just curious. What newsletter (that Pam did)?

Have you been checked for asthma?

Migraine, For whatever it's worth, my husband has been with me to the TTT and to an initial visit to NIH with Dr. Goldstein. He does NOT come in and ask any questions of the doctor, nor has it changed his reaction to my problem. I've concluded that it is really difficult for a person to understand something that is RELATIVELY unheard of and invisible. Especially if they are uneasy around "health" issues to begin with. Probably, they think we are being passive aggressive and feel that we are manipulating them with our complaining and behaviors. We ARE being manipulative. We feel terrible, and we need help and understanding, so if that is manipulative, oh well.

Luckygoat3, I admire you for even CONSIDERING it. You must be a very generous and giving person. Since I already feel like there is not enough blood in me for my own body, I wouldn't even think about donating blood.

Deb, Just a thought. Did you ever consider exposure to chemicals (in your gardening) as a cause of your dysautonomia?

morgan617, I'm so sorry about your dog. I just went though that 2 weeks ago, and I'm still recovering mentally and physically. My health is much worse. Any kind of stressor, and I'm worse. Hang in there, nothing stays the same! Purplefocus, I just hope that when your day gets really "bad", you realize that what you are feeling is a FEELING, and in all likelihood, feelings change. I hope you get the help you need so that you are better soon. Can you remember back to when you were okay? How would YOU have thought of somebody else who had a physical disability? Would you have thought less of them? You are NOT less of a person because of your disabilities. You are here for a purpose.

That's great news. What were you on the nortriptylene for?

Mirgraine, I never heard of the Candida anywhere else except in your mouth, skin, and in the gut (if my memory serves me correctly). Maybe there are some websites where you could look up "candida overgrowth?"