sue1234

Of course everyone has different ways of subjectifying symptoms, but most of us have true, objective symptoms. Blood pressure changes when changing body positions, for example. I personally get low blood sugar, and I can check when I get subjective symptoms, and find that the objective measurement can verify that. Now, there are also times we feel awful with absolutely no change in objective measurements, but it is still valid. I tend to think there are minute things going on that, if EVERYTHING could be measured at once, something would show, such as oxygen level changes, electrolyte imbalance, etc. Of course, this won't ever happen that we get tested at the exact moment things are horrendous(naturally!). I hope I answered your question. What I mean to say is, I don't think we are really exaggerating how bad we feel at any given time(some are not so bad). I think ALL of us would go out and live life the day we felt a lot better or more "normal".

Ask your doctor to test your morning cortisol(possibly even anytime during the day at this bad point). I would think he would do it just to make sure all the bases are covered. If there is ANY indication it is kind of low, they should do a Cortrosyn stimulation test. This makes sure your body reacts appropriately to stress. Do you by any chance have an endocrinologist? If so, he/she would be the one to address this.

sleep_lady, have they tested you for Addison's disease? I would think since your symptoms are so severe, it would be good to make sure your cortisol is normal!! In fact, it would be crucial to know, because if you are low in cortisol, your body cannot handle life stressors, physical and/or emotional. You mentioned going to your doctor a few days ago was really stressful, and your body may have not recovered if it is a cortisol issue. Do you know if that is one of the tests they ran in the ER?

Look up here for a list of practitioners, and what level training they have: https://www.functionalmedicine.org/practitioner_search.aspx?id=117 I began seeing one a few months ago, and they were the ones that discovered I had chronic EBV. Now whether it is truly affecting how I feel or just a number on a lab slip, I'm not sure. We are still working slowly on that. But they did run some different labs that other doctors didn't do. BTW, functional medicine doctors are regular MDs, who are getting this extra training. You can read on the website.

Have you considered seeing a Functional Medicine doctor? They tend to get to the root of things, and one might be able to help find what is out of whack in your body to cause such severe depression all of the sudden. I have never had severe depression, but lighter depression many years ago. It is HARD to get through your day and normal activities when you can't count on your brain to mastermind it all. I hope something gives for you!!

Sending lots of energy for your trip and appointment! Good luck, and we will be waiting to hear what you found out!

Wow, your calcium is high! And calcium most definitely can cause seizures(not saying yours are caused by it, but....). You need to see an endocrinologist for that, but in the meantime, they can order an ionized calcium level to see what your free calcium is(it is more telling of what is going around your body). If you are super-dehydrated, which some of us easily get, it can cause higher calcium levels. An ionized calcium, I think, corrects for this. Also, they can add on a PTH level to see if your are hyperparathyroid. That would all be a good starting point to see what is really going on with that calcium. Plus, as others mentioned, it is treatable through surgery if you're found to have an enlarged parathyroid gland. Good luck on the other testing. I'm with Katybug on this...it is time for the health professionals to see what your body does.

Hi EarthMother! Good to hear from you! Like Katybug said, you can gather more information now that may help your kids. I hope there is a specialist close by that can give better care than the one that told him there's nothing to be done.

That's great! What factors lead to your improvement?

I've often thought of seeing a good NEW internist and just walking in and explaining my general symptoms and letting them work me up for whatever pops up in their mind. I would not mention POTS at all.

I know that people diagnosed with Stiff Person Syndrome usually have elevated GAD antibodies. We had one person on this forum that finally found out that she had these antibodies, had either IVIG or plasmapheresis(can't remember which one), and it got rid of her dysautonomia. It might be worth another opinion.

Yola, did they do anything about your GAD65 antibodies??? Maybe I'm wrong, but that sounds like it could be your dysautonomia cause?

I do understand the autoimmune basis that your are talking about, and I can say that a lot of people with other diseases have low vitamin D levels, also. (I'm part of other disease groups). I guess in general, people are not outside, walking to shop in town or hanging clothes out to dry, etc. We(other normal people) modern people jump in our tinted-window vehicles and drive everywhere, and we all either stay indoors doing technological things or work inside. For myself, I cannot tolerate any heat, so I get very little sun. I can say that I am worse now than when I began with POTS, possibly due to that fact of less sun. I tried vitamin D over the years, and could not tolerate them. FINALLY, this summer, I am able to better tolerate them and am trying to get my levels up. I also believe the sunscreen movement really had an effect on our vitamin D levels. I understand it is to prevent skin cancer, but I can say I didn't have any older relatives in my extended family that grew up from the 1910s get melanoma. And of course, they all spent a lot of time outdoors. We did have a few basal cell carcinomas removed, but that is taken care of with dermatology checkups.

Stephsurf, my brain only gives me limited "windows" where I can understand things, and today is not one of them. I did realize that some beta blockers are not good for asthmatics. Can you, or someone, explain what the beta blockers do to the vessels in the lungs by how they affect the adrenergic receptors?

I also feel like I have a tight diaphragm that is related, somehow, to gi issues. It is very annoying. I don't like not being able to breathe normally.

Well definitely keep us posted! I have breathing problems, too, such as if I carry on a conversation with someone for maybe longer than 10 minutes, I almost have to quit talking as I'm out of breath. I can't wait to see if this helps you!

Thanks for keeping us updated. Keeping my fingers crossed he sees an improvement, even if small, soon!

Thanks for the post, and there are actually quite a few of us that have neck issues. I am very interested in how your progress goes. I hope to watch the video this afternoon.

I have kind of the same thing! I never thought to bring it up, as I thought it was just one of my weird things. I cannot lie on my back, either flat or using 1 or two pillows. I would need 3 or 4, so I would be in the propped up position. When I lie on my back, I feel as though my stomach is physically blocking my blood flow in my upper abdomen. At the same time, it seems that the air that I'm breathing in, or some of it, goes into my stomach. With time, this seems to somewhat inflate my stomach and put pressure. I think this is what is happening, because when I stand up afterwards, I burp a lot of air back out. I just sleep on either of my sides. If I accidentally roll over on my back while sleeping, I soon wake up due to not getting adequate O2(I assume).

It's so nice to hear of a proactive doctor. Hope Tyler sails through the next few days!

Faintinggoat, you mentioned you were anemic. Did you correct that? That could definitely contribute to your increased fainting if it is on top of having POTS.

My vitamin D has been low for the last 8 years. I never could tolerate the 50,000 IU more than 2-3 doses a year, so it has stayed low. I just recently retried D3 OTC, and am actually tolerating them now (yay!). I must say that in the last 2 years I have had horrible muscle clenching in my trunk area. After just a month on about 3000 IUs, the muscles are about 90% normal! I'm hoping to test and see where my numbers are at. I always was in the teens, and working hard now to reach the 50s.

CONGRATULATIONS!

I had my thyroid removed 6 years ago, so can't seem to find the right dose. Vasopressin is the pituitary hormone ADH, or antidiuretic hormone. If it is low, you tend to pee all the time. I definitely do. I have had another MRI since the original one 8 years ago, but the radiologist said everything looked normal. The Neuro did not review that one, so I've just been waiting to see if labs do change. Not much else I can do.

I ask because I have 2 "shadows" on my pituitary that a neurosurgeon said could be "representative" of a tumor/tumors. This neuro said to come see him if/when I show abnormalities in endocrine lab work. My cortisol is this year just going high(by a few points, nothing drastic) and my vasopressin is always low. I spent the last couple years of my menopause with weird FSH/LH. One year I would be told I was in menopause, with high numbers, and the next year I would have a period, with low numbers. My TSH is weirdly low, even when I lessen my meds. Nothing screams abnormal, but lots of little inconsistencies.