Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by yogini

  1. A couple of weeks ago I was diagnosed with moderate sleep apnea. I usually wake up once in the middle of the night and that explains why. I was given the option of getting a mouth guard or a CPAP. I can also go to a sleep doctor which I might try to do next year. Because of the holiday I haven't had a chance to research what this means. Just wondering if anyone else has this and what treatments you may follow. My dyautonomia is largely improved. I'm wondering if I treat this if I will feel even better and closer to normal.
  2. Is your CPAP machine working to treat your apnea? What are your BP and pulse ox when you wake up with your heart racing? The heart rate usually increases to improve circulation and if you aren’t getting oxygen due to apnea a HR increase would be a normal response. The worst symptoms in Dysautonomia occur when standing. If your symptoms occur while sitting or sleeping it might not be Dysautonomia. If you have already been diagnosed with apnea I’m wondering if it’s that. Keep us posted. Also let us know if the doctor in Austin is helpful.
  3. Measure your BP Florinef headaches are usually caused by BP going too high, in which case the answer is to adjust the dose. Your doc can advise best.
  4. Vertigo is spinning/dizziness related to an inner ear condition. I experienced POTS related dizziness as my main symptom virtually all the time until my POTS began to improve. POTS related dizziness doesn’t usually involve spinning. Headaches are also a symptom of Dysautonomia. All of my symptoms began to improve once I got on the right medicine. what are your heart rate and blood pressure when you experience the symptoms?
  5. You should consult with your doctor. Most people take midodrine a few times a day and the dose you are on is low. But also there are a few other medications that increase BP. If midodrine doesn’t work for you. It takes time to find the right treatment.
  6. Which medications have you tried? There are several that help hypotension.
  7. Hi, I wouldn't assume that your arm pain in one shoulder is related to dysautonomia. I would go to a doctor and get it checked out separately as you may have an injury.
  8. Dysautonomia symptoms change sometimes and if it is positional it definitely seems like it could be a POTS related symptom You doctors can advise best. It seems they did take you seriously if they kept you overnight for 2 nights. I agree with the other post - it would be best to try to investigate this through your doctor. If it avoids a trip to the ER maybe the referral could be expedited. Also your doctor could investigate other causes besides the blood clot.
  9. Have you tried eating smaller meals more frequently to see if this helps?
  10. mestinon increases BP so you could tell if it had effect by measuring your BP. i agree that it doesn't necessarily mean that your symptoms will improve on any given day.
  11. Have you been diagnosed with dysautonomia? Are your blood pressure and heart rate ever not normal?
  12. Generally dysautonomia is diagnosed by a 30+ sustained increase in HR above your resting HR or a sustained decrease in your BP above your resting BP. Your doctor could diagnose you best, but the test result you posted does not seem indicative of dysautonomia to me. We have good days and bad days so some people with dysautonomia don't test positive on the day they are tested. You should be able to measure the increase (or decrease) at home on another day, though.
  13. In POTS the heart beats faster to maintain blood pressure. Often increasing blood pressure and blood volume will help reduce the heart rate. Since midodrine only lasts a few hours people usually only take it in the day, so that it is out of the system by the time you are lying down. There are other medicines and treatments for dysautonomia, though.
  14. Have you measured your blood pressure and heart rate? Lightheadedness usually comes from low BP. If you were taking salt and water before you might need more now (or a medicine which increases your BP like midodrine as you mention). Compressions stockings can also be helpful
  15. Are you measuring your heart rate and blood pressure when it happens?
  16. Dinet ad Dysautonomia International have lists of doctors experienced in Dysautonomia. I would check one of those lists and try to work with a Dr locally. Clinics are not great with ongoing care so you will need to find a local dr anyway. There is a lot of good information so you can read and direct your dr if you find a good local dr. It is a lot of trial and error with drs and medications. On the clinic if you can get an appointment and it’s covered by your insurance it doesn’t hurt to go, though.
  17. In Dysautonomia you can feel lightheaded in any position. Glad your doctor is running thorough tests.
  18. Does your blood pressure drop when you stand? You might have another form of Dysautonomia, not POTS. Generally you have to have salt/water consistently over time and then your BP will increase a little. Increasing salt and fluids only helps a little - it doesn't necessarily totally stop low blood pressure or flare ups of your symptoms.
  19. Interesting. I also have a much easier time eating later in the day. I think many people with POTS feel terrible int he am and start to feel better later in the day. For me that is definitely true and that's why I can handle eating more (and walking and doing errands) later in the day. It's helpful to figure out your patterns and follow them, whatever they may be.
  20. I think the POTS flare up causes urination. Your body is in fight or flight mode. A normal reaction in that state is to have to go to the bathroom.
  21. If you have a 30-50 bpm sometimes it sounds like POTS. If you are going to see a specialist it might not just be one appointment - it would be multiple appointments and testing to get better. If you can get it covered under insurance that would be the best/easiest thing. You can try reading a lot of information on the forum about the different doctors and treatments - and eventhings you can do at home to feel better.
  22. I had a sudden onset of Dysautonomia very similar to yours. I would guess that most of your symptoms are related to your Dysautonomia especially if you were perfectly fine before. Whether or not you have POTS actually does not matter as much because many of the treatments for Dysautonomia are the same. I agree with some of the others that a Dysautonomia specialist would be helpful. It sounds like your doctors are a bit confused! A knowledgeable Dr can help you find medication that helps your symptoms. When you start to feel better, then you can exercise and be on your way to recovery. You ca
  23. . If you are having high BP sometines and low BP other times it is probably worth checking with your doctor. I don’t think having lots of salt at night would usually cause you to have high BP in the morning. It usually builds up over time and it is the combination of salt and water over time that increases BP.
  24. if you are peeing out so much your salt to water ratio might not be correct. Drinking water and salt isn’t the same as an IV but if you experiment a bit you might be able to find a combo that keeps you hydrated.
  • Create New...