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Orthohypo

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About Orthohypo

  • Rank
    Advanced Member
  • Birthday 05/03/1960

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  • Gender
    Female
  • Location
    Ohio

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  1. Just checking some old posts about low dopamine txs and wondered how the CC visit turned out for you Sarah. I just saw Dr Shields (neurologist) there and he ordered a thermal sweat test (in a sweat cabinet). Did you do that one? Saw dr jaeger there three years ago and have been struggling. He released me because my cardio tests were all good. Anyway, just wanted to tell you about a dopamine supplement called Dopatone. I was low-normal in dopamine and no one suggested I supplement, but I read about on Potsgrrl's blog and it has been very helpful in a short amount of time.
  2. sorry - unintentional repeat posts! Was on phone and reply didn't appear to be working.
  3. Just checking some old posts about low dopamine txs and wondered how the CC visit turned out for you Sarah. I just saw Dr Shields (neurologist) there and he ordered a thermal sweat test (in a sweat cabinet). Did you do that one? Saw dr jaeger there three years ago and have been struggling. He released me because my cardio tests were all good. Anyway, just wanted to tell you about a dopamine supplement called Dopatone. I was low-normal in dopamine and no one suggested I supplement, but I read about on Potsgrrl's blog and it has been very helpful in a short amount of time.
  4. I got my doctor to agree to let me reduce the Florinef to see if it helped with the anxiety. I am down to 0.05 mg but it hasn't made a difference. I was on 0.1 BID before tapering down. If its helping your POTS, maybe the anxiety is actually a symptom of he POTS itself.
  5. I have considered it but haven't purchased yet. Read somewhere that the fascia tissue response will set in if inversion is more than 12 (?) or maybe it was 20 degrees. That would suggest the need for a table that can be locked into place at selected angles. Does anyone know of reliable non- sports store source? My insurance might pay for part of it if it came from a medical supplier, but I can't find any in Ohio that carry inversion tables. I would purchase from online but am leary about that. BTW my osteopath wrote an RX for one in support of my inquiry to help heal a herniated cervical disc.
  6. Diamond, you said it perfectly! I am so frustrated with not being able to plan ANYTHING. I had that exact thing happen where I ws about to get into the car to go to the health food store, thought I'd better have a sandwich first, then got an attack of weakness, anxiety and fake flu that I was down and out for over 6 hours! So for hose of you who have been dealing with this for a while, do the doctors just tell you that's how it's going to be? I'm still looking for solutions but sometimes I think it's not going to do me any good because things are getting worse instead of better.
  7. Oops, forgot to quote what I was thanking Rama for.
  8. Thanks Rama -I knew you would know! I'll have to look these up and learn more. If its not too much trouble and you can point me in some good directions I'd like to get some good info.
  9. Sea bands for nausea - acupressure bands for wrists. Compression stockings at 20-30 mmHg are manageable for me. Doc says higher levels are too hard to get on and create banding that actually cuts off circulation. I can't get through a day without mine! The video documentary by DINET on POTS on YouTube and the video of the Webinar by Dr Rowe also on YouTube. Yoga classes and yoga Nidra healing meditation (available online by Amrit Desai. He has a very soothing voice as opposed to another one I downloaded in an app.) once you do this meditation a few times it makes you feel like you have a perfect body! It's lying down, so if you can relax it's super easy to do.
  10. I would just say to try to get by with as little cortisone in the injections as possible. I had six in my cervical vertebrae in 18 months plus two (half the amount as the neck) in my shoulder. It made my anxiety really bad. Now that I can tell it's dissipating because the pain levels are going back up, I also notice I have less trouble with anxiety now. I can't stand the anxiety attack weirdness and weakness that knocks me flat. Maybe try it and then see if some of these other things might help. I don't know why the insurance companies in the US will cover that first. This week my new pain specialist is trying facet injections in the vertebrae with a local anesthetic to see if it provides relief. If it helps in two separate sessions, they will try to get nerve ablation approved. This is a drug-free approach which is supposed to last 6-9 months. I hope it works and insurance says yes! Anyway, the nerve pain gel is ketoprofen/gabapentin/bupivacaine 4%/5%/1%. The muscle relaxer cream is baclofen/magnesium/guaifenisin 2%10%/6%. The message on the phone when I'm on hold says the pharmacist can help with pain issues and to email him. Not sure if I'm allowed to put that info in the post so PM me if you want it.
  11. Dana, I am OI and when I take pseudoephedrine I feel much better overall. And it's a 12 dose so it lasts! I get the same effect after two doses of sumatriptan for migraines. I was just telling my husband tonight that once the migraine is gone I have more endurance to get through the day and I don't have my daily afternoon crash. Problem is my doc said not to take pseudoephedrine since I am on Midodrine and the max for sumatriptan is 6 per week. The pharmacist said if I needed a pseudoephedrine once in a while it wouldn't be a problem with the meds I'm on. The Midodrine at 10 mg TID just isn't helping much. I need to find out how sumatriptan works compared to other vasoconstrictors. Or maybe it's just adding it to the other meds that helps. Anyone have an idea about this?
  12. Puppylove, I know this is so frustrating for you and I'm sorry you are having to deal with this! Have you tried the Meet Others option on this site? If you're still in high school it would be wise to have a parent take you to a coffee shop if you do meet someone with dys in your area, but I'm betting there are other young people nearby who would understand and emphasize.
  13. Had the same "beautiful brain" comment from my neurologist when we did an MRI to see if there was something there that was causing chronic migraines. Sheesh!
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