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donaxemena

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  1. This is a really old post I am replying to but I wanted to update for me. I have Nuero/hyper andergenic POTS or Hyper POTS. I have slowly gained weight from 130 up to 288 regarless of diet. I have flares. I did not go down the path of medications for the weight because of all the feedback here. I was worried about having more POTS problems on top of everything else. But, now that I have ballooned up and no I do not eat a lot. I barely eat 800-900 calories a day. I am never hungry. I eat good food when I do eat but its not enough. It all started with that Keto diet. I did loose weight initially but then I flared and ended up stopping. Dietitian and md said it was because my body couldn't handle the ketosis state and I went down adrenal insufficiency hole and crashed. This became the story. I would stabilize with weight but each time it would go up a bit higher. Occasionally jumping 70+ lbs in a couple of months. It seemed that I had too much cortisol. all in all, the dysautonomia has affected my system terribly and POTs isn't the only problem from it. The entire endocrine system, all of the other processes have problems with working right on a regular basis. Just when I feel stable and think I can start to do something to loose weight, I crash. My doctors only suggestions are to learn to love who I am at the moment and they prescribe the meds and I am very in tune with when I have to come down on them or go higher and I have a lot of them. My point here is phentermine is like any of the other meds if you have dysautonomia. It may cause problems sometimes and not others and you may have to try it for a few days or weeks and then come off it and then next time you try it will work great. Its not the meds but rather your system waxing and waning and if you can be in tune with yourself and have report with your doctors then you can manage your condition better. I have finally chosen to go down the path with a couple of stimulants because I also have narcolepsy and ADHD both are "intermittently expressed" and turns out I need the dopamine and serotonin boosts but not all the time. I have been stable for a month now and really wish someone would have told me earlier on that it will be trial and error and that I have to be more proactive with my body. keep notes, communicate with the doctor regularly via messages, and be consistent with everything. It helps to then when you try to tell them that you are continuing to gain weight but you only eat 900 lor less calories. They dont believe you but if its in black and white and in an app then they have to face that medicine may be failing you instead of the other way around. Good luck and enjoy life.
  2. I've hyperpots since 1986. It was worse in my late 20's and early 30's. I have "flares" also. I stick with Metoprolol and Zoloft for mine. Keeping the fight or flight anxiety down is key. I had to do cortisol for a while because my adrenals got too tired from working so hard. Finding new ways to cope with being a mom and raising kids is the hard part. I would say, "pick your battles" and ask yourself is this gonna matter in 5 minutes, 5 hours, 5 days, 5 weeks, 5 years etc. It is okay to sit down and rest too.
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