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Everything posted by p8d

  1. Misleading TTT? Now positive ANA

    I don't have lupus but undifferentiated convective tissue disease which I understand is when the ANA is positive but not specific enough to identify a particular condition. I too, have neck issues. Not too bad, just a bulging disc at C3-C4 or 5. Brain fog this morning.
  2. Misleading TTT? Now positive ANA

    I'm sorry the TTT was so bad. I absolutely dread ever having to go off meds and repeat it myself. I was tested ~every 5 years for lupus for 30+ years and it wasn't until the third ANA in 18 months post POTS that a positive showed. I too didn't think I had achy joints. I hadn't put together that having to buy more comfortable shoes meant my joints hurt. When the rheumatologist pressed on the joints in my hands and feet I swore rather forcefully from the pain. Treating the autoimmune disease has helped a bit with the fatigue and more so with the joint pain but hasn't done much for the POTS symptoms that I recognize.
  3. Treatment for hyper-pots

    I'm hyper too. I also exercise, both weights and aerobic. I'm quite severely impacted but after three years, countless med trials and a year of physical therapy (still going) I can manage walking for 45-60 minutes on a good day. I take Bystolic for tachycardia, methyldopa for norepi surges (works more smoothly for me than clonidine), wear compression stockings, elevated the head of the bed and loads of salt and water. I'm homebound and ride my stationery bike and use a rowing machine 3-4 times per week. I do strength and weight training other days as tolerated. I also had an autoimmune disease crop up since being diagnosed and treating that with Plaquenil has helped the most with the severe fatigue.
  4. Hi. I've searched the archives on this but have a few questions I didn't see answered there and am hoping those of you who have tried this can help. I took my first dose last Friday and it certainly gave me more energy but I took a whole pill which was very intense. I've taken half pills a couple of other days and I get a lot more energy for a few hours but then crash pretty hard by mid-afternoon. Does anyone take it more than once per day? It's disrupted my sleep a bit, I wake early and with a half pill I can get back to a fitful sleep for a few hours. Does this wear off? I'm not taking it everyday because I have read it loses effectiveness. Any help will be appreciated.
  5. 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.
  6. Small fiber neuropathy

    I have SNF and Raynauds. What you describe sounds like my Raynauds. You should check with your Dr. Many of us have Raynauds. Have you been diagnosed with POTS yet?
  7. Gemini, I've never heard of ocular migraines. Interesting. I asked my neurologist about the overstimulation and if was ANS or CNS. My previous PCP thought it was CNS and prescribed scopolamine patches. My neurologist said it was impossible to determine if it's ANS or CNS and told me not to use the patches so I haven't. My new PCP is checking with the other dysautonomia neurologist in the area for his opinion but I haven't heard back yet. She suggested that I try the madafinil the neuro prescribed for fatigue and thought it might help with the overstimulation. I've taken three doses so far and will be posting some more questions in a new post. I have traveled when I took it and did ok but I didn't go far. I'll keep you posted.
  8. 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.
  9. 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!
  10. 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.
  11. 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.
  12. 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.
  13. @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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. Severe Adrenaline Surges

    Methyldopa works for some. I found it "smoother" than clonidine. It's very effective for me.
  21. 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.
  22. My beloved, knowledgeable PCP has left his practice and I am struggling to find a new one. I have fantastic POTS care from a neurologist and a cardiologist but would like a PCP who has experience/knowledge of POTS. Thanks.
  23. That's so wonderful and in such a small city too. It's such a relief to find a knowledgeable Dr. I'm happy for you all.
  24. Has anyone on Medicare gotten IVIG covered?
  25. Oh yeah. Once I couldn't get out anymore a large number of friends disappeared. I don't even get many emails anymore unless I email first. I try to remember that they are all busy people dealing with their own lives. It doesn't really bother me much anymore. Those that stick around are worth their weight in gold. I also have my dogs which are good company and the best husband ever so I know I am lucky.