sue1234

I am not diabetic.

I cannot lie flat on my back, because it is like my windpipe gets somewhat blocked and I can't get a decent breath in. I sleep on either side, but sleeping on my left with neck lifted up occasionally makes my heart race.

I read through back posts about this, and was wondering if anyone from now has this problem? I had mono as a teen in 1978, but got well and went on with life. In the late 80s started my slow health decline with anxiety and glucose issues. POTS didn't hi until 2006, so don't think EBV has anything to do with my POTS, or does it? Did it reactivate at that time maybe? Anyway, I am not familiar with all the research on EBV and CFS, etc., so not sure what this means, if anything. My lab result was: EBV, early antigen ab, Igg 34.2 (0 - 8.9) Any thoughts from those familiar with this subject? I have NEVER been tested for this since I had mono in '78.

Yep, I've had low blood sugar for many years. I feel awful when it's going down, but it's happened so many times now, I'm losing my ability to notice it until it is really low. I don't feel it now until it is in the 40s(2.5-2.8 mmol).

Or, "Syndrome of Hijacked Alpha/Beta Receptors" . We sure can come up with our own name!

I agree with that! I have noticed this past winter when I would get over-cold, my Raynaud's would kick in turning my fingers white. But I also noticed my head/brain felt funny, like I might pass out or something. All I could think of is if my arteries peripherally were constricting, then they must be doing the same thing in my head and making me feel bad. So, yea, I agree that could be an issue. Funny, I just posted in the "5 minute TTT" thread that I can see how the new autoantibody theory could be causing an over production of adrenaline, etc. Our fuzzy brains must be thinking this morning!

Kitt, thanks for the passing on of Mayo's info. I could have an argument against their criteria though(not against you, Kitt!). 1. We all have days where we are somewhat better and days that are just horrible. What if they tested on our somewhat better days? 2. No matter what their criteria, this is what happens to me during any TTT. The timeline will be different on any given day: They stand me up, I feel slightly lightheaded then it goes away. As the minutes go on, my hands and feet(especially) feel like I'm beginning to pool. At some point, my heart then starts to pound. I start feeling uncomfortable in the head. The feet feel itchy and "full". This scenario happens the same, no matter if it is a 10 minute or a 40 minute TTT. The 10 minute TTT my heart rate stayed at around 28 bpm above baseline, and my b/p would dip then go up, back and forth. Mayo's notes mention how my feet turned "red and blue, mostly cyanotic", within minutes. On the 40 minute TTT, I forgot and can't find my paper, but my heart rate went around 35 bpm, but I pooled so much that my adrenaline kicked in over-drive. My b/p went up to around 175/110 while my heart rate kept racing. I can see where that new theory of autoantibodies could fit here, being that pooling happens due to vessels not constricting normal. Then the adrenaline system kicks in way to much to keep trying to constrict until it finally has enough to work, and then BAM! So, my heart was thoroughly tested by an EP and I have no heart issues. Meaning, my heart has no electrical or conductivity issues that cause my blood pressure to become high and erratic, along with an elevated heart rate. My symptoms are POTS related, whether Mayo's 10 minute TTT catches it or not.

I personally cannot stand to have anything even vaguely tight around my abdomen. If my pants get at all snug, I unbutton them and sometimes half unzip them to relieve the pressure(because I'm home all the time, I can do this). Any pressure at my abdomen seems to put pressure on my chest and head.

Maybe see a plain internal medicine doc and let him figure your liver out. I mean, where there is smoke, there's fire...maybe? Related or not, the liver needs to be addressed. You will have to keep us updated.

Speaking of heavy metals and elevated liver enzymes, have you had your copper tested? Ceruloplasmin is tested alongside that. They both check for Wilson's disease. I had mine tested a few times over the last couple of years, and I keep showing an elevated FREE copper, but not the right copper/ceruloplasmin for Wilson's. I have no clue what that means. I've read some research where they say it can predispose someone to Alzheimer's, but haven't asked a doctor about it.

Do you remember why they quit? Your heart rate went up 32 point, and I thought their definition was going up 30 points in 10 minutes(or under?). If they redo it for free and it's not too long of a drive, maybe go back. Otherwise, it wouldn't hurt to go local. My TTT done at Mayo-Jax, according to them, showed I didn't have POTS. A TTT done a year before locally through a cardiologist lasted 45 minutes and the diagnosis was hyperPOTS. I never understood that 10 minute thing Mayo goes by. How is that normal if I have to spend my life living it in 11-minute spurts then sit for an hour to recuperate? I say it like that because I may be "normal" within that 10 minute frame, but go over that 30 bpm at minute 11 or 12. No matter what, a heart rate of 29 bpm makes me feel just as bad.

Well, it sounds like you have a plan! I hope this is part of solving your health problems...possibly even POTS(fingers crossed!).

Yes, I'm with Chaos and dkd. I think an electrophysiologist would be a good doctor to see, especially if they are like Dr. Suleman in Dallas that will test you until he finds the answer. But a pulmonologist might not find the answer, but should be able to "measure" the depth of your respiratory issues.

I was prescribed it last month, but I never started it. I read the side effects, and some of them are things I already struggle with so didn't want to exacerbate them. I did like the idea of having my anxiety controlled, though, but couldn't go through with it.

You should definitely even see a different specialist. This may OR may not be related to POTS in particular, so seeing maybe even a variety of specialists, possibly the root cause can be discovered.

I can't answer your question, but that must be what happens whenever I take ANY probiotics. I get stomach bloating and get a lot of flushing off/on.

My last year, I have had had muscle stiffness, something like my torso is tight. I've posted a couple of times about it, but not many people seem to have this. I tell my doctors it's like if you are playing dodgeball and someone is getting ready to throw it at you(and you're not allowed to catch it), so you stiffen your body up to break some of the blow. My torso seems to stay in that situation most of the time. Like you, I wake up without it, but it then is with me during the day and it's hard to get comfortable when I go to bed. I literally have to almost do meditation just to make the muscles relax. The key thing is they DO relax, but only if I am intensely thinking about it, which is not reality during a 15 hour day. I have no clue why mine popped up. I had POTS 7 years before this popped up, so I don't think it is POTS-caused, but I don't really know. I seem to wonder how calcium/magnesium play into this problem for me.

Thanks. Do neurosurgeons take appointments from patients that have questions like this? Do they do things like have you do an updated MRI so they can figure this out? My insurance does not need me to have a referral, but didn't know if neurosurgeons require a referral themselves.

Thanks. I think it is time to ask my old neuro about it.

Katy, I have issues around my C3-C5. My report was not very detailed from the radiologist, but the neuro that looked at it said I have spinal stenosis. Anyway, I was wondering if you ever have muscle issues around your shoulder/chest area that could be related? My new thing in this past year is I get shoulder and/or rib muscles that seem to just clench down for days. Besides being painful, it seems to make my chest tight and makes breathing slightly labored at times. That is the thing I don't like. I can handle the pain, just don't like the chest tightness.

I totally think it depends on the cause. POTS is not a disease in itself, but a symptom of the underlying problem. For instance, one of the main POTS researchers found that in some of his adolescent patients with NMH, he found they were anemic(it wasn't a straightforward diagnosis). I am assuming if you correct the anemia, the POTS becomes a non-issue.

I cannot answer your question, as I have never had an issue mixing words up when speaking. BUT, this past year I have had an issue with mixing my letters up when typing. I will put all the correct letters in the word, they are just not in the correct order! I have to reread and fix everything I type up.

My POTS hit me 8 years ago. I was very happy with my life, busy with high school and college-age kids. After POTS hit, I spent the first year thinking, whatever this is, the next doctor I see will figure this out and fix me, and I will get back to my life. During that time, I was still upbeat and actually taking advantage of the quiet time to sign up for Netflix and begin watching tv series I had not taken the time to watch before. It was excellent company during my lonely days. After that first year, I begin to actually really think about how this might be my life indefinitely. I still knew I would keep searching for just the right doctor that was going to fix all this, but I began thinking ALOT about the meaning of life. I was raised without a religion and only going to local churches for Easter(I have no clue why just Easter!). When I got married 30 years ago, I converted to Catholicism to be like my husband. That was fine enough for me all that time, but then POTS kept me from attending church anymore, so I began to really think about what part religion played in my life, and realized it was just a weekly ritual for me. With time, I made the decision that, for me, I had never felt as spiritual as the present time when I realized that everything happening to me is part of MY life for a reason. I have spent alot of time contemplating what it means to be me, here with the family that I have. Again, for me, exploring spirituality made so much more sense than being involved in organized religion. When Catholic, I felt I never had the "power" to control my spiritual life. I was told what to do and how to recite prayers, etc. Now I just look at life and calmly say to myself that something is being taught here...learn from it. My whole life I gravitated towards the "underdog", but now I really feel a kindred attachment to people less fortunate. I'll admit I'm not perfect and don't always love everyone, but I now UNDERSTAND a lot of why people are what they are. I see things now for what the actual scale of problems they are. For instance, and I don't want to get political, but bringing it up to make my point, but when alot of people complain about our country and "liberty" issues, my thoughts immediately go to the poor in third world countries. It makes me think how spoiled we as a society can be, when our problems are not problems of day-to-day existence. We don't have to forage for food daily or literally starve to death. We don't have a raging war going on in our communities for years. I must say that I spent my pre-POTS life with careful blinders on. Life was great all around me, if I didn't delve to look too deep. Now that I've dared to look and feel, I cannot turn back. I just cannot judge people's life situations anymore, as we all need a little help. (Once again, I am not perfect, but I do make a heck of a lot more effort to say and do the right thing, following the "golden rule". Because of all this, I am in a hurry to get my POTS fixed now, as I feel like there is so much to do! I seem to now have a multitude of purposes that I could chose from and go from there. If only I could get this old body to cooperate!

I'm curious about the same things Naomi and Badhbt are. I have some cervical stenosis around that area and always wondered what it contributed to my symptoms. I really need to see a doctor about my whole scoliosis, somewhat twisted torso. It has gotten worse with the years of sitting from POTS. Definitely keep us updated on this whole journey.

I know that Mayo can be an amazing place for people needing answers for complex health problems. I was not lucky enough to see the right providers when I went. I don't think POTS is quite their "forte". They look at it as black and white, and we have way too much grey mixed in.