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Alex D.

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Everything posted by Alex D.

  1. I would suggest a 24 hour halter heart monitor, This will detect the severity of Ectopic beets, PVS's and PAC's. An ECG is only a short snapshot. My 24 hour halter monitor detected 22,000 ectopic beats. This was out of 99,000 beats for the day, 1 in 4 beats was ectopic, I not am on a heart rhythm medication, Propafone, which has done wonders. My Ectopic beats are far and few between. Good luck!
  2. I got the Moderna vaccination months ago, only a day or two of body aches. I have OH, SFN, many symptoms. Digestive, migraines, CFS, brain fog, etc. I personally think Covid will be with the world forever. Vaccinations will be essential, variants are stronger and more deadly. I really don’t think vaccinations are a personal choice for almost all people. The alternatives are more deaths and suffering. Sorry for the soap box talk, but I had a few friends that did not survive Covid.
  3. My 24 hour holter monitor showed 22,000 PVC’s and PAC’s. My cardiologist said that they weren’t in themselves dangerous, but I insisted that we try and treat them. After several months trying different medications and discussions about an ablation we tried Propafenone. It all but cured the ectopic beats, a no more than 1-2 an hour. Hope you find a solution, it’s a real pain living with the etopic beats!
  4. Try this, I’ve been using it off and on for about a year. I love it. https://www.wellplated.com/bedtime-golden-milk/
  5. Hi, I’m on Lyrica and Pristiq. They help, but no cure. In a rather interesting side note, one of our cats developed something called “Twitchy Cat Syndrome.” it is an imbalance in the nervous system, similar to Dysautonomia. Cats was caused by a shock to the system from steroids. Our vet prescribed anxiety medication for the immediate issues, but also gave Stanley (cat), antidepressants to try and reset the nervous system. It worked, we slowly increased dose, then after a few months, we slowly weened him off. He is almost normal, still has spells of the Twitchy Cat, but very infrequent. So, it appears to work in cats! Good luck!
  6. I have a lot of ectopic beats, but not afib. Don’t have a Kardia, but my wife has an Apple watch 4. We both have had inclusive readings, possible afib, got no abnormal issues with our cardiologist. take several readings and see what happens. Keep a symptom log,
  7. Testing for gastroparesis is very easy, your GI doc should do a formal test. It’s hard to deal with, meds that help have a lot of bad side effects. My relief is mainly through diet, in my case it was trial and error.
  8. Hi, I was diagnosed with very extreme ectopic beats, I wore a 24 hour heart monitor halter and had approximately 98,000 beats, ( normal range), my PVC and PAC count was 22,000. One out of four, cardiologist said not very dangerous but extremely troubling as the sensation would disrupt my sleep and my waking concentration. We tried 3-4 arrhythmia meds before hitting on Propafenone. Now almost no ectopic beats, I am very happy with my results. Caution, The Med has lots of interactions and you need to use it for a while to find good dose and to see if it is effective. Been on it for 2 years. Good luck, there are options, Alex
  9. Try this, I’ve used in the past and seems to work. https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
  10. I am hypersensitive to a lot of smells. Some will make me fill I’ll to my stomach. This seems to come and go for me. It can be food smells, perfume, flowers, etc.
  11. I had 22,000 PVC’s and PAC’s measured during a 24 hour heart halter monitoring. My heart beat count during this time was 99,000. Near normal. But the ectopic beats were every 4th beat, it sucked. I could feel them 24 hours a day. Cardiologist had me try several arythmia drugs before finding Propafenone. I reciently had a 4 hour surgery and the anesthesiologist said there were insignificant number of ectopic beats. Seems to be working for me.
  12. Apple Watch Series 4 has highly reliable HR and ECG, Apple is workin* on BP for a future release. It’s expensive but it’s the best,
  13. Stay strong, it gets better. Positive attitude, meditation, medication, accupuncture and exercise. My process!
  14. Gabapentin works for me, only side effect is a little sleepiness. So I took at bedtime. Ok also tried Lyrica. Gabapentin seemed to work better for me.
  15. Hi, The issues with wrinkly fingers does not have very much to do with hydration. It has been proven that the wrinkling of fingers is caused by the nervous system. Dysautonomia can often cause wrinkly fingers without exposure to water, mine often go from smooth to wrinkly at a moments notice. Just one more of those Dysautonomia fun facts and symptoms.
  16. I use a traditional TENS unit for specific localized pain like neck and coat hanger, but I bought a Quell unit to try and minimize my fibromyalgia pain. It expensive, but they have a 30 day money back guarantee. its been clinically tested and will provide some relief in 80% of patients. I guess I’m in that 80%. Alex
  17. 180 is way too high. Could be POTS. Get it checked out. Also check your laying down and standing blood pressure. These are important numbers in a diagnosis.
  18. My dysautonomia started with heart issues. During a 24 hour halter monitor I had 17,000 PVC's and PAC's. Doc tried three meds and we were on the way to ablation, we tried propafenone and they are almost gone. There are lots of meds that can help, ask a cardiologist.
  19. My sends of smell is hightened at times. This disease is fo variable.
  20. I have exterior etopic heart beats. After my Neurolgy diagnosin, I get a full checkup from a cardiologist. Stress test, nuclear sresss test, halter monitor, and cardio catheterization. All normal.
  21. The peppermint tea is great, I also use on OTC pill for IBS. IBguard, it's a peppermint pill that survives the stomach to work in the intestines. Give it a try. Alex
  22. I run low 96-97 but dot that low. I do have cold sweats sometimes when my temp is low. Don't know why. No answers from docs yet.
  23. Anyone have experience with Functional Neurolgy treatment. I understand it's directed by a Chiroptactor using acupuncture, lasers, nutrition, adjustments and exercises. Looking at hopeful alternative approaches. They promise a lot. Alex Deshuk
  24. My neuro says almost all supplements are OK, but says avoid B6. Anyone else have this same warning?
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