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DysautomiaA

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Posts posted by DysautomiaA

  1. 20 hours ago, Debbie Rose said:

    Welcome!! It sounds like you are doing alot of the right things.  Work slowly at building up stamina. I started at 10 minutes every other days and built from there. It took me almost a year to build up to 50 minutes of slow walking 5 out of 7 days, but it has helped me feel better. But I also follow a regimen of fluid intake, salt intake, medications, spacing out my activities-limiting the times and giving my body plenty of rest between active moments. Everyone experiences dysautomonias differently but you have found the perfect place to connect and find friends and facts. Hope this helps

    That's awesome. I strive for that too. I mean i know i can never go back to my old adventurous life but a near-normal life would do. These months recently though have been pretty tough. The heat has been beating my body and I have been mostly bed-bound for about eight weeks since the start of summer season. On good days, I can take a quick stroll and drive. But yes, thank you for the advices! Appreciate all of them. 

  2. 1 hour ago, bombsh3ll said:

    Hello and welcome!

    As an alternative to Florinef, would you be able to try licorice root capsules? They work similarly and can be bought online. I get mine through a UK company but think I have seen them on Amazon. You don't need a prescription and would probably be able to get them delivered. 

    I take 2 x 450mg of the Swanson brand per day. They totally transformed my life for a year, then the effect wore off, but that was one lovely year.

    B x

    Thank you! I will look into that!!! 

  3. 2 hours ago, DizzyGirls said:

    Welcome to Dinet!  Don't forget the salt!  Try to get it in your food, things like pancit or probably adobo would be high salt.  Drinking that much water is good, but there is such a thing as too much of a good thing.  Can you make sure some of that is electrolyte water?  Would keep your electrolytes balanced. 

    Oh I drink Gatorade and Poweradr and sometimes I mix salt and sugar in a liter of ice cold water. 😅 And also fresh coconut water. My doctor also recommended evening primrose oil which he said can help with hormones. I don't know about that but he said my hormones can also play a role with my symptoms. 

  4. Thank you for the reply. Unfortunately, I am in the Philippines and we don't really have doctors who specialize in autonomic disorders. I have done Holter, echo, thyroid tests and routine labs which all turned out normal. I haven't done the tilt table test yet but I am trying to find a very reliable hospital/doctor to do the test. The closest facility which has an autonomic center is in Japan. I really want to go but travelling while sick is making me even more anxious. I'm planning to built a little stamina first before I consider that option. Also I've noticed that I've been having polar opposite symptoms. Before i had hypotension, like 80/40mmHg but now my BP spikes to 170/110. I would feel nauseated, really dizzy, numb, and very faint. But then it would only last for 15-20 minutes then it goes back to my baseline BP (90/60 which still is low) Sadly, midodrine is not available in my country and so is florinef :(  but I have been reading up on the non-pharmacological treatments. I drink at least 5 liters of water a day. I use compression socks and an abdominal binder. I try to avoid the heat, etc. Right now, i think my POTS flare-ups have been triggered by the summer season and I'm feeling like my body is always in a fight mode. I have asked for Xanax from my doctor and so far, I have less tremors and a more subdued nervous system. I'm hoping I'll have more good days than the bad.

  5. Hi everybody. Just joined DINET to talk to people over the world who have dysautonomia. Mine started after I was in an electric shock accident last May 2015. I was exposed to an open circuit with 110v. Went to the ER with just tachycardia and discharged after a few hours. Even went to work the same day. About a few months later, I started feeling subtle symptoms. Dizziness, fatigue, nausea, tachycardia. I have seen at least 10 doctors then who said I might just be stressed with work. So i took a leave for a week but I still wasn't feeling well. I would get dizzy and get palpitations just by doing groceries or shopping. One doctor recommended me to go for psyh consult and i did and the psych said it was just anxiety and gave me xanax and ssri's. A month after the palpitations got worse and i started to feel faint by just getting up from bed. I got myself a pulse oximeter and lo and behold, i would go from 60 lying down to 180 just by standing. So i went back to my doctor(who doesn't know about POTS) and he had me on bisoprolol. I've been having these symptoms for three years now. Sometimes I'd be out of breath without doing anything, nausea, shivers, hot flashes, and now recently, BP spikes (because of the heat). I have my good days where I can go walk the dog and exercise lightly but bad days get me stuck in bed the whole time. 

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