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potsdo

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Everything posted by potsdo

  1. I saw ENT who thinks I'm having vestibular migraines. Has anyone tried Zonisamide for migraines?
  2. I’m going to stop the Elavil. I don’t think it really helped. I went to the ER yesterday with chest pain. Luckily the Coronary CTA was completely negative so I’m sure the pain is coming from the sympathetic surges. Interestingly, the medical provider I saw knew quite a bit about Dysautonomias. Her suggestion for me was Klonopin. I’m going to speak to my PCP about it. It’s funny how things happen for a reason and how people are placed in your life at the right time.
  3. It made me hungry all the time. I gained weight on it. Exercise is supposed to help but, of course, what do you do when you're exercise intolerant?
  4. As I started to recover from my first (2005) and second (2012) relapses, I started to go to the YMCA for their exercise classes for elderly patients. They looked at me funny and asked me why a young man (I was young once) was coming to these classes. It was just the right amount of rehab for my situation. Let me tell you, some of those older adults were running circles around "the young man." Lol!
  5. Amitriptyline does have some Norepinephrine re-uptake inhibition. So, in theory, you've got more NE circulating which could cause sympathetic surges/stimulation. Once I'm out of this relapse, I'm going to wean off the Elavil I'm on and see if that helps. It never helped me for sleep or migraines. It's supposed to block the parasympathetic side and used in conjunction with beta-blockers to block the sympathetic side. The only thing "working" for me right now to get a few hours of sleep is some low dose Ativan.
  6. Happens to me. Sometimes it'll happen randomly several hours after eating. Frequent, small meals seems to help.
  7. Medical marijuana does suppress the sympathetic nervous system. A physician friend of mine suggested I try it, but, in my line of work, I don’t want my name to show up somewhere on a list of mmj card holders. Is Dr. Thompson still practicing? I recall he was in the panhandle and was out of the office for a bit because he also has Dysautonomia. Not sure if he’s back to work.
  8. No good doctors in Tampa. The ones I've talked to all say - "This is uncharted territory." Which means they don't know anything about dysautonomia. There's a Dr. Trevino in Clearwater who supposedly treats dysautonomia patients. Unfortunately, he's so busy with his practice, he's not taking on any new patients. I tried the "I'm also a doctor" but his staff wouldn't budge. There's Mayo Clinic in Jax. That's where I went with my first relapse. They weren't great. I had already diagnosed myself and had done most of the diagnostic testing. Every doctor pretty much tells you to try various meds until you find a combo that works for you. Very frustrating. My best friend is a cardiologist at the Cleveland Clinic and has treated dysautonomia patients and he tells me the same thing I've heard for the last 20 years. What brands of CBD were you using that helped?
  9. Sorry to hear about everyone's sleep difficulties. I'm in the same club unfortunately. I take 0.25 Ativan at night to take the edge off the adrenaline surges. I've been going to bed at 9pm, intermittently nodding off until 3-4am, and then tossing and turning until 6am at which point I just get up. I was just diagnosed with Type 2 diabetes so that's contributing to the sleep issues. It would be easier if I could nap the next day for a bit, but, the adrenaline surges don't let up if I try to nap. What a crazy illness!
  10. Would you mind sharing what you eat and how often?
  11. It’s been a while. For those who don’t know, I have POTS for almost 20 years. Now in my third major relapse which is complicated by new onset Type II diabetes. I’m trying to control it with diet. Exercise is out of the question right now due to the relapse. The issue is my blood sugar keeps tanking every 2 hours requiring constant glucose monitoring and eating almost every 1.5-2 hours. My endocrinologist has no real suggestions. Does anyone have any experience with this or perhaps a physician that does?
  12. I definitely felt worse when I first started the new meds. I was on the old meds (SSRI, etc) for 8 months with no improvement and essentially bed-bound. I forced myself to walk and do light weights until I had enough strength to go see my parents in Pennsylvania (I live in Florida). My mother's cardiologist has a brother who's also a cardiologist who happens to specialize in dysautonomia. Coincidentally, he's the same Dr you saw. He actually wrote the interpretation and treatment protocols for the ANSAR test. He has an extensive database of patients he has treated successfully. I'm glad I saw him. It's been a difficult 16 months, however, his med regimen has definitely helped me to where I can go back to work.
  13. I had all the usual ANS tests (Tilt-table, etc) and was on the usual meds (Florinef, Toprol, SSRI, etc). These were all peripherally-acting meds and de-stabilized my condition even more. Read the section on Paradoxic Parasympathetic Syndrome in the link. It may seem that all the symptoms are being caused on the sympathetic side when in actuality, it's the parasympathetic excess which causes an exaggerated sympathetic response. So the treatment is to suppress the parasympathic side which is done by using centrally-acting meds. If you're medication sensitive, you can start at the lowest possible dose and work your way up every few weeks. If you look at the data in the link, it says that autonomic balance can be restored in 12-18 months (if there is no permanent damage) and some people do get off the meds. I've had definite improvement, however, I've been down this road before and I suspect I'll need to be on some meds on a continuous basis. Only time will tell. Don't give up and don't be afraid to try new treatments/meds. The most important thing is to not let this illness control your life.
  14. I had an ANSAR test and was prescribed the same medications as you were. I couldn't get the Midodrine as it was out of stock at the pharmacy, however, I did start taking the Coreg and Elavil (Amitriptyline). It took a good month before the meds started kicking in. That was a bad month - my ANS was completely out of whack. It's been 8 months and things are starting to stabilize. I would say keep up with the meds, but, don't expect miracles overnight. It's going to take some time. The meds you were prescribed are centrally-acting medications and work faster than peripherally-acting antidepressants. Here's a link for more information than you'll ever need on the ANSAR test: http://www.ans-hrv.com/interp_univmiami_fr.pdf
  15. I just had an ANSAR test. It showed Paradoxic Parasympathetic Syndrome. The physician I saw is a cardiologist who specializes in Autonomic disorders. He's changing all of my medications because he said I need to be on centrally acting meds. Here's a link that explains ANSAR results: http://www.ans-hrv.com/interp_univmiami_fr.pdf
  16. Absolutely. I have the same symptoms including not being able to focus. At the beginning of a crash, I can't watch any TV or sit at the computer or even look at auto tail lights. It settles down when the flare subsides. One explanation that has been suggested is extra-ocular muscle fatigue.
  17. I'm on it. I take 50 mg twice a day. Once a day doesn't work for me. I've been taking it for years without any issues. It's got my heart rate and blood pressure under control. Some days, however, when the adrenaline surges are pumping, nothing seems to help.
  18. Two major relapses (in the middle of one right now) after being diagnosed with POTS. First one lasted 8 months. This one is 6 months so far. Had a few flares since 2003 (prior to diagnosis) which, in retrospect, were due to POTS.
  19. Dr. Blitshteyn will do phone consults. http://www.drblitshteyn.com/
  20. There is a website somewhere that has a great list of what helped one POTS patient. Unfortunately, I can't find the link (must be the brain fog). Perhaps someone knows the link - the poster listed things that helped them like "forced themself to stay awake", "didn't give in to their body which was behaving like a tantruming child", "gradually exposed themself to stimuli". Obscure clues, but, maybe it will ring a bell with someone on this forum.
  21. Brain fog, nausea, fatigue, sleep disturbance. I find the fatigue very debilitating.
  22. Neither. I start getting symptoms of hypoglycemia and POTS around a blood sugar of 90. I suspect it's because of the cerebral hypoperfusion disrupting the brain's auto regulation of glucose hunger. In other words, my brain senses the fall in blood sugar and the ANS over-reacts.
  23. This is the one I use. It comes with 50 strips and the meter is disposable. A good deal at $20. http://www.walmart.com/ip/All-in-One-Blood-Glucose-Testing-System/10818578
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