HopeSprings

What type of Dr. (specialty) ordered these tests? I have had blood tests for just about everything, but no Dr. ever tested for many of these. Wonder if there are any answers in your blood work. Let us know.

Lissy, lol, I know those 2 are SO smart. I'll bet they solve the POTS mystery before the Dr's do!

I cannot tolerate even a few sips of any kind of alcohol. I feel the effects immediately and if I actually go ahead and drink (i don't anymore) my heart will beat faster, I feel confused, my eyesight feels like it's starting to go black... so not worth it. Caffeine on the other hand is a great thing for me. It does make my heart beat a little faster, but it helps tremendously with the dizzy, foggy, tired feelings.

Just wondering if anyone knows what a normal person's heartrate does when they stand up? How much is it supposed to go up? What should it be throughout the day while we are up and around? And another thing -- I had my norepinephrine, epinephrine and dopamine tested laying and standing. The norepi and dopamine were quite elevated standing. I forget the exact numbers (the results are mixed in with a huge box of medical records under my bed) but the norepi was around 1100 or so. It definitely met the criteria for hyperadrenergic POTS (as decided by researchers at Vanderbuilt), however if you look at the reference range on the test it was considered normal if taken while standing. It's SUPPOSED to go up (a lot) when someone stands. How can the people at Vanderbuilt say this meets the criteria for Hyperadrenergic POTS, but if you look up reference ranges (even online) you find that the numbers are well within normal range? Hope someone knows what I am talking about.

I still maintain that these sensations come from either an inner ear (vestibular) problem or lack of blood flow to the brain (oxygen issue) from the POTS. I wouldn't attribute them to anything metaphysical, spiritual or psychological. I cannot speak for anyone else, but for ME these are physical symptoms that unfortunately are categorized as a psychological problem. Before I had POTS I got the same feelings after getting off an airplane -- it would last about an hour after landing and then go away. Now I am stuck with them to varying degrees 24/7. DP/DR are known side effects (and or withdrawal symptoms) of SSRI's, as well as benzodiazepines. It could well be side effects for those of you on those types of medications.

I hope it's ok to post this question here. Before I found Dinet (which is amazing) I was visiting another support group called NDRF. I have tried many times over the last few months to access those boards and it consistently says under maintenance. I just find this very odd as this was a pretty active message board. The founder is Linda Smith, the lady with POTS, profiled on Mystery Diagnosis. Hope she's ok. I am just curious if anyone knows anything?

Yes this is ME every single day. It is my worst symptom. What you are describing is called depersonalization. There are times when I am feeling particularly "POTSY" where it feels like I cannot feel my body... not literally numb, but just sort of not all there. I will shake my hands out or rub my legs to try and feel again. It IS hard to describe. I also have derealization, which makes my surroundings look/feel kind of surreal and dreamy. I think Ram is right and it has something to do with blood flow to the brain. Most of the time if I lay down it helps -- assuming because blood is going to the brain? I also have an inner ear disorder, which I am still working with a Dr. to try and uncover exactly what is wrong there, which can also make you feel weird in the head. Have any ear problems that you know of? I am starting to wonder if there is an overlap between vestibular and autonomic causes for all these symptoms, including the POTS ones.

I have wondered if I have this. What are the main symptoms?

When you say "upper abdominal" -- is this around the sternum area? This is where I feel the pressure and sometimes mistake it for heart or chest pressure, as well as a sensation of not being able to take a full breath and then will start belching like a man and it relieves the feeling somewhat. Is sternum pressure actually upper abdominal bloating??

I hope you find your answer. I went undiagnosed for over ten years. I am still on the hunt, as POTS doesn't explain everything. I know how incredibly frustrating it is to be experiencing all of this and not know why, seeing Dr. after Dr. and getting no answers. I have a lot of the same symptoms you described, but am curious for more information on one that you mentioned. Can you describe the chemical sensitivity more? This is one of my most challenging symptoms, as it is so hard to avoid chemicals in everyday life. You said you could taste them -- the same thing happens to me. If I smell someones perfume, it feels like it enters my bloodstream, it gets in my mouth, up my nose, in my head, makes me lose cognitive ability, makes my ears clog up and can take HOURS, if not a day- to get rid of. Is it like this for you? Does alcohol bother you? If I take even a sip, it sends my symptoms out of control. Thanks.

I haven't tried contraceptive pills because of fear of side effects too. When I was pregnant my symptoms (especially the dizziness) were ten times worse. Out of curiosity, I looked up Angiotensin in pregnancy and found that it is LOWER during that time. This could be a coincidence, but it's making wonder? Higher seems better, lower worse.

Aurora, interesting-- I am not alone. Yes, I was thinking the same thing... that maybe the water retention was helping. I just wonder then why does Fludrocortisone have such a bad effect on me and salt tablets do nothing at all? It's the same premise so why doesn't it work. Someone above wrote this: "Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation." Isn't angiotensin a vasoconstrictor? If this hormone is at its highest before menstruation maybe its helping us? Is it available in pill form!? Naomi

I am actually worse right after my period as the hormones are climbing and better the week before my period. I wonder why? Then get worse again pretty much the day I get my period. None of it makes sense.

I just want to say I cannot stand it when Dr's say "oh such a small dose can't possibly cause any symptoms." Ugh, WHY??? do they do this-- I have heard this so many times when I have bad reactions to medications. Can't they trust the patient, give us some credit? !

How exciting! I hope the Doc is right.

Julie, Ahhh..., relief, an easy to understand explanation. Thank you. I see you have the MCAD diagnosis. How did you get the diagnosis? Naomi

I just made myself dizzy trying to read the posts and links about this. I have a terrible chemical sensitivity, as well as flushing and some of the other symptoms. I was tested for Mast Cell Activation Disorder through 24 hour urine, but I don't think the test was done right because the lab wasn't able to test for what the Dr asked for, but something related instead. Mastocytosis (and its relatives) seem impossible to test for -- skin biopsies, bone marrow tests? This just seems to be another one of those impossible diagnosis. It was hard for me to read all of that -- maybe I am missing something? And what type of Dr. do you see for this?

Wow, Houdini -- you describe it EXACTLY. I wonder if there is a good way to look at blood flow to the brain while standing? I took part in a POTS study that looked at exactly this, but the Dr. did not tell me (despite my asking) whether I was one of the people affected.

Stace-- I will look into Dr. Pecker, thanks. You see Dr. Grubb? Is he amazing? He seems to be one of the authorities on Dysautonomia.

I tried Midodrine once and it made my heart MORE racy. Is that an odd response? And when I tried Fludrocortisone, I got a strange feeling in my chest, almost a shortness of breath, but not quite. And Mestinon was just plain weird.. after taking that I was looking at the TV screen and couldn't understand what the people on the TV were saying. It was scary. I just don't understand what I am supposed to take. It seems like everything I have tried makes something else worse, yet I can't live like THIS. I have also had so many bad reactions that I am SCARED of medication now. I just don't understand how they can treat a person if they don't really know where the problem is coming from. You could end up taking something that is going to work against you. I feel very whiny lately... and I don't mean to be, I am just so frustrated.

Thanks for all the info Erik! Ok, just looked up Clonidine and it lowers blood pressure -- can't afford to have mine any lower than it is. Next...

My BP doesn't fall when I stand. Erik you said "If you have been authoritatively found to be Hyperadrenergic-POTS (and you have confidence in that classification to begin with)... there might be argument for not trying Florinef or not trying it first since it's reported to be less helpful in that situation..." I think I have hyperadrenergic POTS. I had my norepinephrine levels tested laying and standing and the standing levels were very high -- which I think is how they determine the hyperadrenergic type... of course since I don't have a good Dr. working on this, I can't say for sure. Why would Florinef not work with this type? Do you know what WOULD work with this type of POTS? (still in disbelief I do not have a Dr. to have this conversation with)

erik-- I participated in some research with this Dr. He is very smart, but was more focused on the research, than helping me individually. He did not respond to my last e-mail.

This is by far my worst symptom. I feel drunk all the time to varying degrees. It's very hard for me to see straight, to focus my eyes (though my vision tests perfect). It feels like the eyes want to move around. I have constant pressure in my head and ears. I have severe cognitive problems. Any activity that requires sustained eye focus (reading, getting ready in the mirror, driving, going to a movie) or any place with lots of stimuli (stores, museums, the dreaded Chuck E. Cheese) all make me feel even more drunk. I kind of feel like I am swaying all the time. When it's really bad even my speech is affected. I am on the verge of being diagnosed with a vestibular disorder -- I see the ear Dr. soon to follow up on some tests, but I know he is going to tell me this. He called it vestibular/visual mismatch. I am just wondering if all this weird head/eye stuff is from the POTS -- is blood not making it to my head? or if it's from an inner ear problem or is it both-- I have read that the vestibular system controls some of the Autonomic System (or is it vice versa?) I am just wondering if a lot of people with POTS also have these vestibular type symptoms? Honestly if I could get these under control I could deal with all the rest -- I'll take a pounding heart over this weird dizzy feeling. I really feel like I have very little quality of life and I just want someone to HELP ME. I have seen sooo many Dr's over the course of 12 years -- I just don't know where to go next? Anyway, does anyone else feel like this is your worst symptom? Can you describe how it feels? Thanks, Naomi

Just a quick question because Dr's keep telling me to try Florinef. I had a blood volume test (through nuclear medicine dept.) and it showed my blood volume was perfectly normal. Would the salt, water, Florinef regimine make any sense in my case? Isn't the point of this to boost blood volume, because low blood volume is supposedly what is causing the POTS symptoms? So if mine is normal, this doesn't apply right? Thanks, Naomi