HopeSprings

Alex - a wee bit confused. Do you not think the postive AChR is what's causing the POTS symptoms? And if so, do you think it's possible (and this may reaching a bit), but is it possible the trauma from the benzo withdrawal could have triggered an autoimmune response.

Spinner - not a Klonopin fan due to bad experiences that Alex described, but glad something helps you. Alex - I've been meaning to ask you, now that you know you have the positive antibody (sorry I forget which one) AAG? what are your thoughts on benzos relationship to POTS for you? Do you think it was just a bad coincidence that you came off around the time you developed symptoms or do you think the withdrawal could have triggered an autoimmune response or something?

OK, that's really interesting! If you haven't seen his work and you're interested, look up work by Professor Bill Yates http://neuroyates.com/research-interests.html Goes along with what you're saying. And I completely understand about objective findings providing validation. Please let us know if you get any vestibular testing or the SPECT done. I'll be curious to know your results and what Doctors make of them.

Oh yes, I agree Soskis and my children have all the recommended vaccines, but I've debated when it came to some of the optional ones.

Why are you unsure if you have POTS? What does autonomic testing show? We've discussed the possible connection between inner ear disorders and autonomic symptoms here before. I also started with vestibular symptoms when I was young, have high frequency hearing loss, tinnitus and constant pressure/cloggy feelings in my ears and constant off balance, foggy/spacey/drunk feeling. I did have some abnormal inner ear test results. One Doctor diagnosed borderline Meniere's, but later changed her mind. Another Doctor thought possible perilymph fistula - Doctor number #1 said no way. Another Doctor told me it was Hydrops. Most treatments I tried either made things worse or did nothing. You state so definitively that inner ear conditions cause autonomic symptoms. I've read this in research studies, but regular Doctors don't seem to know anything about this. Tell me what you know please! Also, I had the SPECT scan, (posted a link to your last post on this) and it did show hypoperfusion, but knowing this doesn't seem to lead anywhere. It was like okay, now we know this, but we don't why it's happening or what to do about it. And what do you mean about ear conditions having an effect on cerebral blood flow?

Holy cow, Alex I hadn't heard about this case! With all the attention around swine flu that year, I was so torn about whether to vaccinate my children, but decided to just do it. Reading that article made me cringe. Here, let me inject with you with some POTS? I know it's a rare reaction, but living with illness, I don't think I could knowingly take that chance with my kids. Thank goodness they both did fine. Dave - if it were me, I would be satisfied with those blood test results and not feel the need to chance it with a vaccine that I reacted badly to in the past.

Another great way to raise awareness is to participate in our Doctor education project. We have lots of brochures just sitting here that could be going out to help Doctors learn about POTS. Please help out by sending me some contact info. See pinned post at the top of this forum.

It's good you're feeling better and I would try not to let this interfere with enjoying the improvement in your health. I don't have much to add except to say that it took YEARS for most of my family to understand how sick I am and that NO, there really is no cure for this, nothing more I can do, there's nothing I'm not doing and no, Doctors don't have the answers. Honestly, I still can't even believe it! It goes against everything we grew up believing. And these are close family member who I know love me and just want me to be well, but it was hard for them understand an illness no one has ever heard of and the dreaded, but we look so normal. And it's just such a weird, complex and hard to explain and understand illness - so much internal suffering, but little that is outwardly obvious. I'm not excusing the lack of compassion because when someone says they feel sick that should be enough, but like KayJay said most people -no matter how you explain- just don't get it, but it doesn't mean they won't eventually. I also agree that your boyfriend should be advocating for you. That might help speed the process along. But I really just wanted to say, I liked your POTS joke! I think POTS is depressed and he's taking everyone down with him! I agree with one thing your FMIL said, do something that makes you happy (just forget about her when you're doing it!).

WHAT does that feel like? My heart bothers me when it's like 110, at 140 I'm feeling pretty bad. I can't imagine 200+

Interesting, Jacki and Zap - didn't know that.

I'm confused. Universities will cover the the cost of medications and administration for their students? Anyway, sounds like this was their policy which she was counting on to get through school and then they breached their policy and left her in a vulnerable & horrible position. Good for her on the win of this case!

Yes. Here you go: http://forums.dinet.org/index.php?/topic/20265-spect-scan-results/?hl=%2Bspect+%2Bscan

Was curious so tried googling, but all that pops up is Candida related alternative/holistic websites. I guess the Doctor didn't mention it or think there was anything to do about it? Can it be normal to have "many yeasts" - I have no idea.

Sue, you looked it up too? That's so funny. I heard the story yesterday on talk news, ironically while in the parking lot of a Dunkin Donuts where I was munching on the muffin I had just bought. Are my muffins making me drunk? LOL. I think they sell alcohol home testing kits at pharmacies...

What does this mean? What's tetany? Sue - yeah, I don't know if the low glucose is just an incidental finding with me & means nothing or if it's actually causing any symptoms. I have the home meter and I never test low when I get that after eating dizzy spacey feeling, so I don't know. I actually heard a weird and interesting story on the radio about a guy who would feel drunk after eating and my ears perked up because bagel was specifically mentioned. It turned out he had some weird yeast infection and he was literally converting yeast into ethanol and was getting drunk. He was treated with anti-fungals and got better. I had to look it up because I thought it was so interesting because I've been saying for years I feel drunk, plus I cannot tolerate alcohol and I feel weirder after eating sugars and carbs. Ok it sounds a little out there, but you never know! A few links if anyone is interested: http://www.medicaldaily.com/texas-man-can-get-drunk-without-alcohol-due-auto-brewery-syndrome-can-you-brew-beer-your-own-stomach http://file.scirp.org/Html/1-2100535_33912.htm

Saw the endo and she looked at my GTT results and was like no big deal, you have reactive hypoglycemia. She said it's common and lots of women have this and there is nothing to do except manage symptoms through diet. I asked, so there's nothing else to look at, insulin levels or something? And she said no, if it were an insulinoma or something, the low glucose would show randomly not in response to eating certain foods and since my fasting level was fine it was fine. Fine, fine, fine - lol, as usual, except I don't feel fine! I've had lowish fasting levels, like in the 60's, but I think don't think that's low enough to mean much.

Woo Hoo!

Yes, Corina, the *why* always seems to elude us. Let us know if you learn anything.

I get you Thegron - crappy test to diagnose this. That's enough for me. lol.

Don't know why my original link didn't work - but this is what it was about-->Nav1.7/SCN9A http://www.ncbi.nlm.nih.gov/pubmed/22275247 I dug up the post because I wanted to remember when I posted it. I remembered at the time thinking it was exciting, but probably wouldn't help me (us) now. Well, only a little over a year later, the test is available and I was able to get it done last week. I'll have the results in a month or two. And even if it's negative, they are finding more and more genes related to this so all hope is not lost! (see below). If this really explains almost 30% of cases of Idiopathic SFN, that's a lot of people and I would think good treatments will eventually follow. The testing is done through GeneDx if anyone with idiopathic SFN wants to discuss with their Doctor. I'm not sure if other labs do the testing. "The Dutch team is continuing to seek genetic causes for the remaining cases of I-SFN that are not explained by SCN9A mutations. Faber says that they are sequencing SCN10A, which encodes the related channel Nav1.8, and SCN11A, encoding Nav1.9. “Certainly there will be more genes” that cause these other cases, she says. “I’m convinced of that.” From: http://www.painresearchforum.org/news/7360-nav17-mutations-move-mainstream

You definitely seem to have an issue in this area, Sue. I don't know about myself. I'm going to tell the endo that I get extra spacey after I eat (especially carbs and sweets), plus show her my results and see if she wants to look at this more in depth. I only saw her once and she seems not to be the type who's going to dig deep, but we'll see.

Just realized diabetes testing IS why sent me for the test. Duh. I think I need to rest my brain for a while.

Ohhh, I understand.... so the drink is not respresentative of real life food. So what the heck is the point of test and why don't Doctors know this (or at least the one who sent me for the darn thing)? Maybe it's more for diabetes? I showed my PCP the results and he thought it was nothing and if the endo feels the same, I'll just drop it I guess.

I don't understand the first thing you said Thegron. A false positive would imply that glucose did not actually drop, but test results show that it did. And whether hypoglycemia is a common occurence or not doesn't mean the testing isn't picking up on a real thing, just a common thing. Are you saying that in general that testing for hypoglycemia after eating is not the proper way to diagnose it? As to the second thing you said... even if the problem isn't insulin, but a delayed glucagon secretion, isn't that abnormal as well? Are you saying it doesn't matter because it would only happen if we guzzle a glucose drink? So what is the proper way to look for hypoglycemia? I'd be fine disregarding these test results if I understood better why.

That's not necessarily true. Find another attorney.