p8d

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About p8d

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    Wisconsin

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  1. I take a half tablet daily of Florinef and drink ~4 liters of fluids daily. I drink herbal teas/Trioral rehydration salts and take 4-5 Vitassium salt/potassium caps a day plus eat lots of salt. I have found, and I think one of the expert Drs recommends, that if I "slam" 500-1000mls of fluids every few hours, depending on bp/hr my bp goes up quickly and stays up for a couple hours rather than if I sip liquids all day. My bp though is quite variable. Sometimes too high, sometimes to low.
  2. It's not really like dizziness, at least to me. I asked my PT today and she said sensory overload, highly sensitized to lights, noises, smells, visual patterns. So I'll try everything you all have suggested plus these. Thanks so much!
  3. I've had to get a new PCP and while she is quite dysautonomia conversant (yay!!) when I tried to explain the issue of being overwhelmed in moving vehicles or moving my head too fast or being in bright, busy environments she suggested I was anxious and might want to see a therapist. I don't know how to describe it in medical terminology. I insisted that I don't get anxious and that it's like everything moves too fast for my brain to process. I don't know how else to describe it. Any ideas? Thanks.
  4. Thermotabs and Instant Nausea

    I can't tolerate those either. I do better on Vitassium capsules and Trioral rehydration salts. I have Banana Bag sachets but haven't tried them yet. Good luck.
  5. Yikes, Ancy, those are serious swings. I really like methyldopa, it doesn't drop my bp like clonidine did. It's so frustrating when things change suddenly and you have to spend months working out a new med regime. Please let us know what the cardio says.
  6. I had spikes, not that high but they were worrisome to me and my PT. In the end I increased methyldopa and lowered my fludricortisone dose and salt. All of these helped. I think lowering the fludricortisone helped most. My neurologist and cardiologist said not to worry/go to the ER until it hit 180/110 but I prefer it 130s-140s/80s. It took me about three or four months to figure it all out.
  7. @Sam123 I get something like 4 or more gms of salt per day and take fludricortisone which helps your body retain blood volume. I have never fainted but get more symptoms, including dizziness and shakiness the longer I am upright. I'm very disabled and housebound so not a good comparison. After three years of trying various drugs I seem to have some that help being upright somewhat now. I've also been going to physical therapy for a year and on a good day, maybe once a month, I can stand and walk for around an hour. I ride a stationary bike and use a rowing machine three times a week and do strength training most others. I get severe sensory overstimulation whenever I go out, moving vehicles, Dr offices, the PT place. My neurologist told me it's a marathon and will take years to see improvement but I will never be like I was before. I was a professor and traveled the world but I have accepted and adjusted to my new life.
  8. I usually feel better in the evenings likely because I have had so much fluid during the day that things stabilize somewhat. Are you drinking several liters of water (I drink about 4) and seriously increasing salt intake? Those are standard treatments for getting blood pressure elevated and heart rate better controlled. I find if I quickly drink about 750mls of cold herbal tea quickly a few minutes before standing I'm not so dizzy and heart rate and blood pressure are better, at least for awhile.
  9. My understanding is that stress may be a result but not cause of POTS. Hopefully your cardiologist will do a "poor man's tilt table test" when you are not taking propranolol which, as Yogini states regulates heart rate and blood pressure. If, after laying down for several minutes when you stand upright your heart rate increases greater than 30 beats you likely have POTS. Usually my cardiologist will test my heart rate after immediately standing then 2 minutes, 5 minutes and 10 minutes. Blood pressure can drop significantly or for some people it actually rises. If you check the information section on the main page of this site there is a lot of information that should be helpful.
  10. Yeah s, very frustrating when you find something that helps and then it stops working. For me it's usually right after I get a 90 supply! I tried four different beta blockers before I found Bystolic. That definitely cut the palpitations, but again, it took messing with the dose. Too much made them worse, too little didn't do enough for the tachycardia.
  11. I sincerely hope that the cardiologist can help you. Having a knowledgeable, caring specialist is so important. Catecholamines are: "are hormones made mostly by your adrenal glands as a reaction to stress. When you feel stressed, these hormones increase heart rate, blood pressure, breathing rate, muscle strength, and mental alertness." According to this site https://www.webmd.com/heart-disease/catecholamines-14697#1 I had a blood test and a urine test. I take methyldopa for norepinephrine surges and it works very well.
  12. Have you been checked for hyperadregenic POTS? Some of what you describe sounds like it. You would need a laying and standing 10 minute catecholamines test. Are you seeing a POTS specialist? They generally do this testing.
  13. I can't explain why it isn't helping the palpitations but in my case the longer I was on it and increasing the dose helped norepinephrine surges and palpitations. I started with 250mg once per day and increased to twice per day after about a month. Keep track of all your bp/hr and other symptoms and then discuss with your Dr. I too found it more tolerable than clonidine.
  14. Severe Adrenaline Surges

    Methyldopa works for some. I found it "smoother" than clonidine. It's very effective for me.
  15. I take it for norepinephrine surges. It works very well for that. I find it more smooth than clonidine. I don't know about it helping with tachycardia.