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About Potsie1990

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  1. I would advise to try and find a form of birth control that works for you. I cannot live without it. I wasextremely ill, and was off of it for a whole 6 months and just kept declining rapidly. I could barely move my any limb and was on a walker, and I’m an otherwise healthy fit 27 year old. I just recently got back on with a few other things and I feel like a whole new person. I also have horrible cystic acne when I’m off it, and when I’m on bc I have perfect flawless skin. Maybe one tiny pimple a year! I will say i only tolerate Yaz. It’s monophasic I think and I actually lost weight and have no side effects from it. Its the only thing that helps me retain fluid and increases my blood volume. Without birth control, no amount of salt would help and IV saline worked only for a few hours. It might be the specific type you are on, but my POTS doctor mentioned that hormones such as estrogen can trigger autonomic flares when they naturally fluctuate. I still have not so great weeks the week before my white pills (which is when I’m supposed to have my period, but I skip them) but the first 2 1/2 weeks are amazing. My pots is greatly affected by my cycle. I have been on Yaz for over 10 years with no problems
  2. Potsie1990

    p.o.t.s. newbie w/ questions about symptoms

    If you search through recent threads I have a post call Smoking Helps Pots? I will warn you, it’s long and unconventional but considering I was on a walker with severe POTS that left me immobile with terrifying symptoms and now I can live normally again within a year, it may be worth reading. I’ve tried most of the conventional treatments and all failed.
  3. Potsie1990

    Smoking helps pots?

    Thanks so much. It’s been a year since I came down randomly with severe POTS (although I’ve had it my whole life undiagnosed) and it’s been a wild year of ups and downs, with more downs then ups. And I was only diagnosed officially in October, so it took 11 months and a stroke of luck to get a diagnosis. I am grateful for this time of health and will treasure it until my next flare.
  4. Potsie1990

    p.o.t.s. newbie w/ questions about symptoms

    Omg, I’ve had all of this. The de realization is the worst! I couldn’t explain it to anyone. Im so sorry but mine only went away when my BP became more stabilized and nerves calmed down. Feel better
  5. Potsie1990

    Legs burning as if I'm exercising

    I had this as well and still continue to have it from time to time. But for me, it’s aggravated by too much salt and what position I’m laying in. It might be nerve related. Be aware of what position you are laying in and see if changing it helps. It you noticed you had a high salt intake that day, try reducing it and see if it helps. They sell cooling socks on amazon, it doesn’t help the entire leg but definitely helps the feet. I also use mint essential oil and spray it on my legs to give a cooling sensation. Feel better
  6. Potsie1990

    Mestinon Trial -- Experience?

    I was left with severe muscle weakness at its peak and almost suffered a stroke later that night while in the hospital. I had temporary paralysis for over an hour as well. I tried 10mg. I’d be cautious. I heard it helps some people but left me worse. It took me 3 weeks to recover from the meds and gave me even worse chest pains and spasms. My neurologist and cardiologist took me off immediately after 1 dose
  7. Potsie1990

    Smoking helps pots?

    Hey everyone, thought I’d give another progress update : i consulted a new POTS Cardiologist here in LA and we decided to get myself back on Birth Control as my POTS is worse with my naturally fluctuating hormones. Ive been on generic YAZ for about 10 years and I can’t live without it. Every other birth control makes me severely ill and aggravates my POTS. I also have severe orthostatic hypotension which this helps also. so I don’t smoke, but I am still vaping. My cardiologist, who is Harvard educated and is with UCLA has given me the permanent green light to continue with nicotine. I have all 4 of my doctors on my team giving me a full yes to continue. That being said, I am not addicted to nicotine and I likely will never be according to them. I have no cravings for nicotine whatsoever and actually have to remind myself to do it. That being said, if you suffer from addiction issues I would be cautious. I guess I’m one of those people for who nicotine addiction just isn’t a thing. I’m not the only one, several people online I have found are the same. That being said, adding salt into my diet, resting and adding back the Birth control and vaping has been a miracle for me. Just 2 months ago (during my testing phase which I was off everything) I was on a walker, and had muscle weakness so bad I could barely breathe or move my arm without nearly passing out. Now, I am almost in remission. I have resumed normal activities. I still need rest days and an IV treatment here and there but I am feeling great! I can run! And I’m actually starting ice skating lessons as my choice of physical activity for POTS. And as a reminder, I have tried 4 of the Meds typically given for POTS and OH and AI and all 4 have failed and one left me in the hospital with severe bradycardia and almost temporary paralyzed for an hour. So, for myself I can say that I’ve tried a few things already and they are just not working as I have a severe sensitivity to meds Just thought id share. I know it’s not conventional but at the end of the day it’s about quality of life. If anyone needs advice on finding doctors or getting treatment I will be more than happy to share my doctors info with anyone. This combo worked for me, and hopefully it can help someone else too.
  8. Potsie1990

    Would like to try Ritalin/Methylphenidate!

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

    Happy Sunday

    Here’s a little something I made. Hopefully it will make you laugh a little. Lol
  10. 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
  11. 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.
  12. 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
  13. 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!
  14. 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.
  15. 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.