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JimL

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Everything posted by JimL

  1. You get used to it. There are also two different kind of apneas. Central and obstructive. Central is neurological.
  2. The stomach problems came on last late may and over a couple days time. I went from feeling normal to stomach problems that have gotten worse. I went to doctor, had a CT scan, the only things that came back was a mild inguinal hernia, enlarged prostate and a nodule low in my left lung, probable granuloma. Went to my bariatric doc, did an EGD and found h pylori and gastritis. Did a round of antibiotics for 12 days and they symptoms returned later. Had an upper GI and found I had some mild dismobility. At this time I started to get patulous eustachian tube. bariatric doc said lets take the lapband out. Beginning of september, started getting tingling in my feet. Halfway through september started getting double vision. Lapband was removed Sept 22. After this I developed drop foot on my left foot. Went to a new PCP and he sent me for a MRI of lumbar spine. I also made an appointment for an ophthalmologist. MRI came back bad stenosis and disks in L2-S1, L4-5 is so bad that cord disappears on MRI. Got that fixed around Halloween. Went to ophthalmologist in november. Ordered a MRI of my brain. I also had a MRI of neck as I had issues related to that, had previous fusion in 2012. Brain scan came back ok. One test for MG, the ACH whatever it is came back negative. Sed rate and CRP were normal. I even paid for a ANA, which was normal. Eye doc sends me to a neuro eye doc at Mayo. What an ***. She was like, you have 4th cranial nerve palsy. Don't know why, but I'll send you back to your eye doc. No curiousity as to why. My eye doc basically tells me that when my diplopia stabilizes, come back to get prism glasses. I've never had eye problems in my life. Around christmas, I get palpitations and fast heart rate. Go to ER, no heart attack, sent home. 2 weeks later, same thing. I get referred to a cardio who does all the tests. Minimal plaque, no b vitamin deficiencies, but it seems I have OI and sends me for a TTT, which I fail. Sends me to an EP, who blows me off nicely as there's nothing he can do for me. During this time, my ortho says I need more cervical fusion. Get a second opinion, yup, C2-4 are back. Had that done March 27. Had my colonoscopy and EGD last friday. Neck doc said I couldn't be knocked out 30 days before or after surgery otherwise I would have had the GI stuff done sooner. During this time, my stomach issues remain and have gotten somewhat worse. The POTs stuff has improved a bit. I can function without having to leave work because I feel so bad. Still feel off, just not as bad and I push myself a little more. I made an appointment with a neurologist that specializes in POTS for may 21. I hope he's good and figures this stuff out. I got his name form this site, Todd Levine. It's been almost a year of this SS and I am tired of it. I don't know how people do it for years before finding a treatment. My PCP thinks that it's all individual problems. I don't. I think I have something autoimmune/carcinoid/PNS or something that makes sense, but who knows. I also think that a lot of my docs think it's in my head. IF I find out what it is, I am tempted to get a lawyer and bend them over. This whole thing has left me not trusting doctors anymore. They're just mechanics for humans that have more education and charge more. Sorry to get long winded. I've just had it with intransigence, incompetence and indiffernce from the medical profession.
  3. I've never had stomach issues before this. I am miserable though and it's worse off esomeprosole and sucralfate. I am finding I have to cut out certain foods now. I plead guilty. Nothing with tomatoes, nothing carbonated nor alcohol. With my last EGD, they said I had gastritis is two spots in the stomach and they took a biopsy. They did last July too. I just thought that was the normal thing to do.
  4. I just had another cervical fusion 5 weeks ago. I had C2-4 done this time. C4-6 in 2012 and L4-5 last halloween. I'm a mess. The sad thing about all of this is that I lost a lot of weight to get healthier and then this shite. I lost 170lbs. I should be doing better than this and no one can give me answers yet.
  5. Have you ever been tested for sleep apnea?
  6. The only test that's truly conclusive is a biopsy through EGD. I just had one last week and we'll see if it's still active. I've been miserable for months. H Pylori has been known to cause autoimmune response. I have to wonder...PPI's long term are bad. Can cause B vitamin deficiencies and if I've read right, joint/hip problems.
  7. If you're not receiving the care you need, maybe it's time for a new doctor. Time to start from the beginning with a doc that knows what he or she's doing.
  8. My brother has night terrors. When we lived at home, It got so bad that I would wake up before he had them. That's how predictable they were. Around 1:30am. He'd jump up screaming and run. I never saw him move so fast. One time my mom got in the way and he went through her. Another time he tried to get out of the window and broke it. We were in the second floor. He did a sleep study for it. They told him what to do and what not to do. He never said much of why or anything. Drinking can bring it on, that's all I know.
  9. I've had that weirdness before pots, like an adrenaline rush.
  10. I guess the brain loses enough blood flow to check out. I woke up and could talk, but it was unsettling because I didn't know it happened. It's like someone pulled the plug. I have to say in retro I didn't feel right before it happened. Hard to explain. Flushed, strange feeling in my abdomen and chest, warm, very warm then boom.
  11. They said I was out for about 6 seconds. It was scary as I didn't know it happened. I just woke up flat on the table knowing I had been near vertical.
  12. Nitroglycerine. It dialates arteries and if you have some sort of orthostatic intolerance, it may induce passing out. It did with me.
  13. It might be a good idea to get into some cognitive behavioral therapy to learn how to work through this and not be triggered.
  14. I haven't seen a nutritionist. Up until last fall, I had been doing keto. I have since gone normal diet and it's made no difference. It seems like some things aggravate it, but it's hard to tell some times. I was taking pantoprazole twice a day at one point and it didn't get rid of it and long term use of PPI's is bad. I have an appointment with Todd Levine for the POTS stuff on the 21st. I hope he can figure all this out.
  15. Had an EGD and Colonoscopy yesterday. GI issues were the first symptoms I had of a problem, last june, late May. POTS symptoms started around christmas. Originally, they did an EGD and found H Pylori and gastritis. Treated it, but the symptopms came back. With yesterday's procedure, I had two polyps and still have gastritis. Understand I am taking esomeprosole and sucralfate. I have to wonder if I have some sort of chronic infection that is causing these problems. H Pylori can cause all sorts of problems: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017036/ BTW, sorry I haven't been as active here. I have further cervical fusion March 27. C2-4. I had C4-6 done in 2012. I had a lot of swallowing issues for a while.
  16. I passed out when I had a TTT, a few minutes after they gave me nitro. Not fun. Never passed out before.
  17. GERD can cause breathing problems, causing asthma and/or aspiration pneumonia.
  18. I had problems with that and wonder how it figures in. This SShow started with GI issues last june and it was found through EGD that I had H Pylori and gastritis. I was belching a lot. I had a lapband too and they took it out. It helped a bit, but I still had and continue to have GI issues. I just had a colonoscopy and EGD yesterday. two polyps, a hemmorroid and I still have gastritis. The doc did biopsies and we'll see if H Pylori is still active, but I've tested negative with poop and breath tests. From what I have read, cronic H Pylori can cause autoimmune response that has neurological consequences. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017036/
  19. I just find that if they can't figure it out quickly, they default to it's in your head. There seems to be a resistance to admitting they don't know.
  20. It seems to happen if I stand up for a while.
  21. Not the younger part. If you were older, yes. Young people seem to get POTS more often. I think it's more unusual with men over 40. I have a colonoscopy and EGD a week from tomorrow.
  22. There are over a dozen causes for POTS, deconditioning is just one and low hanging fruit at that. I have an appointment next month with Todd Levine, who is a neurologist that specializes in POTS, that's why asked.
  23. If anything my temps are below normal, especially in the morning. 96.8-97. Sometimes it goes up to 99 after dinner. I don't know why and it's only after dinner and not all the time, only once in awhile.
  24. Mine was inconclusive because I couldn't finish it. My heart rate went too high too quickly. It's what cued the doc into this deal. After that he ordered the TTT.
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