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Potsie1990

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About Potsie1990

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  1. Potsie1990

    Would like to try Ritalin/Methylphenidate!

    Dr. rabbani (cardiologist) UCLA Los Angeles
  2. Potsie1990

    Happy Sunday

    Here’s a little something I made. Hopefully it will make you laugh a little. Lol
  3. Potsie1990

    Random pains in extremities/legs/face?

    Yes, and it can be severe, but just had an EMG 48 hrs ago and they found no neuropathy or muscle damage. It must be a pots thing
  4. Potsie1990

    Would like to try Ritalin/Methylphenidate!

    Wow, I feel like I could have written this! I just got all of my official diagnosis on Oct 5 2018, and the past month as been a treatment phase. All of them have failed except the IV saline, which is too painful for me and the effects are temporary. i have a post regarding smoking and pots, but have switched to nicotine. It’s a stimulant and I react very well to it! When I’m vaping I can RUN!!!!! I am my old self!!! It’s amazing! My yale educated cardiologist, John hopkins investigative medicine doctor, and my Harvard educated electrophysiologist all gave me the green light for vaping. Might ask yours as well. They are also about to start me on adderall 2.5mg. My cardiologist has seen wonders with low dose therapies for autonomic dysfunction. I tolerated it very well in high school for ADD (I had undiagnosed POTS) and was even an awarded athlete! It allowed me to have a life! I never had problems until I got off. I would call around and see if you can find another doctor who is more educated in “outside the box” therapies.
  5. Potsie1990

    left arm/shoulder pain

    Mine is in my left arm! It goes through my shoulder, down the arm and to my pinky. It’s intermittent. Seems to only come when im having a flare
  6. I would be very, very, very cautious. The Mestinon 30mg made me incredibly weak, almost paralyzed like within the the peak 1-2 hours after taking it. I also suffered a horrible relapse of symptoms after. I was totally fine before (treating with nicotine which my cardio, neuro and pcp approved ) and the Mestinon screwed me up so bad!!! My pots went to a whole new rock bottom! Didn’t sleep for 3 days and now have a cardiac event monitor for 16 days as my heart starting pausing for 5 seconds and I had trouble breathing at night! Not trying to scare you but please go slow in case this happens to you! It’s horrific!
  7. Potsie1990

    POTS Diagnostic question

    Hi guys, just an update did all the Autonomic testing and two TTT’s... and passed all with flying colors! Got positive everything. I have “mild general Autonomic impairment” with Orthostatic Hypotension and POTS! But they categorized it as the Adrenergic type? I scored a 3... but then they said it was most likely due to adrenal insufficiency (not like addisons). Unfortunately I tried 2 different meds since, both failed with adverse reactions. Will be posting another question soon when I get the energy to type it.
  8. I personally have problems with the slightest altitude change when I’m having a flare. The only thing that helps is your regular meds, whatever keeps you normal usually, and then take a rescue med in case you need it. when it’s bad, an Ativan calms down the attack that happens when my ANS senses the pressure changes.
  9. I literally just talked to my neuro about this today. She agrees it’s different, and she says it’s bexause it’s directly administered into the vein so there’s better retention. I was going 5,000+ mg sodium a day and it did nothing but make me thirsty and poofy. You might have to find a more competent doc and/or find some literature online, print and take it to them.
  10. Hi love, I’m based in Los Angeles. I can refer a network of doctors that I recently discovered and an autonomic testing clinic! It’s at UCLA cardiac arrhythmia center in Westwood. It’s a bit far but, still close enough it might be worth it. Let me know if you would like them.
  11. YES... comes and goes when I’m at my worst. But luckily it does go away in a few days
  12. Potsie1990

    Smoking helps pots?

    Ok guys, so here’s an update. its been a month or so since I started vaping. i moved up the juul with 5% nicotine, still doing 1/2 a day. i am completely without my walker and cane. Still fatigued at the end of the day if I over do it but overall a million times better. I feel like I’m in remission!!!! last Sunday I stopped smoking 5 days before my scheduled autonomic testing, to make sure it was completely out of my system. Sunday itself was not so bad, every day after it was a slow trickle down to where I started. By Wednesday, I was back on my walker and cane. I went to an autonomic testing center at UCLA and did the whole thing, Valsalva, deep breathing, QSART, two different TTT’s, the whole shabang, in one day. F’ing exhausting and felt like I was going to die after. I told my doctors what I was doing and they were amazed, although they could not endorse it obviously. My digestion is better and my symptoms of gastroparesis are alleviated. i can now sleep at night without all the strange terrible things that used to happen to me. My body no longer forgets to breathe. its also been a month without the mysterious traveling nerve pain and joint pain. Turns out, my BP actually doesn’t drop the way that thought it did. It’s on the lower end and I feel better when it rises but it actually goes up when I stand. The electrophysiologist also confirmed it was POTS. So, take it with what you will. But I have been able to drive again normally, breathe, walk, jog if I have to. I feel like a whole new person and I’m forever grateful to finally experience this after a long, gruesome year of failing health. I still have chronic fatigue but I will take what I can get. i ended up stopping the caffeine experiment. Caffeine doesn’t process in my body at all (although for me synsthetic is better an natural) but it makes me so tired.
  13. Potsie1990

    Pregabalin/Lyrica - Experiences?

    Before, and before I even knew what was wrong and was diagnosed, which terrifies me to take to take it after. But technically I could have had pots at that time as well. They just suspect it was mild at that time.
  14. Potsie1990

    Pregabalin/Lyrica - Experiences?

    Gave me horrific sleep paralysis. Like horrific. I will never touch the drug again.
  15. Congrats!!!! May you live the rest of your life joyfully in remission!
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