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Everything posted by Sushi

  1. I got a pacemaker for brady-tachy or sick sinus syndrome. I don't have POTS but rather neurally mediated hypotension, though I was getting both bradycardia and tachycardia and also pauses--which are very unnerving. The newest pacemakers have sophisticated algorithms and mine will try to outpace the premature atrial beats that can lead to arrhythmias and tachycardia. Since getting a pacemaker (2 years ago) I have not had any tachycardia and needless to say, no bradycardia! No idea how a classic POTS patient's tachy would respond but for me, no more tachy, just a steady 70 beats per minute (we
  2. That makes sense since many of us get splanchnic (abdominal) pooling of blood and eating carbs makes it worse. I have asked into a restaurant, had a high carb meal and then was unable to walk out!
  3. Do you mean hypermobile EDS? If so, many of us have it along with Dysautonomia though I don’t think there is definitive research on why. I too have hypermobile EDS.
  4. @RM17 Thanks for telling your story—and in a very engaging way that we can all relate to. Sounds like you struck gold with your first cardiologist—you are lucky as many cardiologists know nothing about POTS. Did she mention compression garments—specifically compression knee socks which are easy to wear? They help many of us a great deal. I need to put them on as I get up from bed and I wear them all day until I return to bed. I could not manage to stand and walk without them, but of course, this is individual. Good luck with your treatment. And, by the way, it is not true that POTS and Dysauto
  5. Mild HBOT (soft chamber) will be an experiment for me. Others have found it helpful but there is no real data yet. I belong to a Facebook group where patients with different diagnoses discuss their experiences with it. It is thought to improve immune function, help with inflammation, migraines, etc. Since it is an experiment for me, a friend is lending me their unit to try so that I can discover if it helps before laying out a considerable amount of money. I do feel better at high barometric pressure so I'm hoping that this is a good indication.
  6. Like others, mornings are the worst for me and I tend to stay up late because I feel better later in the day. I feel much better when the barometric pressure is high. I am about to experiment with this by trying mild HBOT, a soft-chamber that can be used at home. It is pressured to 1.3 atmospheres. It can be used with out without supplemental oxygen from a concentrator. Has anyone else tried this?
  7. A poor man’s tilt table test can be really helpful in identifying the basics: whether you have just orthostatic hypertension or whether you also have POTS. It is easy to do at home and would be one step toward identifying your next step!
  8. My diagnosis isn’t POTS but rather neurally mediated hypotension. My Dysautonomia doctor prescribed Strattera, an SNRI, and it worked extremely well for me though I had to start with taking a third of a capsule every other day and it took about a month to increase to a capsule twice per day. It definitely did NOT reset my ANS though, as as soon as my dose wore off symptoms returned. I think this drug worked for me because I tested as parasympatheticly dominant.
  9. I take CoQ10 and haven’t noticed an effect on BP, but of course individuals will respond differently.
  10. A couple of things: some doctors feel that klonopin can tamp down an overactive CNS and at times when I have had severe symptoms, it did seem to do that. I’m not talking about anxiety but the symptoms of an overactive CNS that some get from Dysautonomia. That said, it is addictive even at low doses for most people. .5 mg twice a day is not a very low dose and is likely to lead to dependence/addiction, so it is good to be very cautious in weighing pros and cons. Re: menopause and Dysautonomia—passing through it did not improve my Dysautonomia at all, though it seems to for some.
  11. I wouldn’t call it withdrawal but yes, it didn’t feel great when the dose was wearing off, but that was only for a couple of hours. I never took more than 5 mg and usually mor like 2.5 mg.
  12. @POTSius When I was taking a low dose of Adderall it did help me with OI. I no longer take it because I have moved and don’t have a doctor to prescribe it.
  13. I do react to the epinephrine in the drops they use to dilate the eyes. As others have said, we all respond differently. I have Neurally mediated hypotension rather than POTS. I need to avoid epinephrine in local anesthetics too.
  14. If you are in the US, qualification depends on what state you are in. Some states do not have a medical cannabis program but each state that does has different requirements to qualify. You can easily check your state’s requirements on the Internet. In my state, medical cannabis dispensaries can refer you to a doctor or your primary care can fill out the paperwork.
  15. That you didn't get a POTS diagnosis. I have more or less the same diagnosis though I have time to sit down quickly before I faint. Were you to have POTS, your HR would have gone up 30 or more points. On my TTT I had a short (about 15 minutes) tilt, then some other autonomic tests done lying, and then a long tilt. After 30 some minutes, my BP went to 88/80 and I did feel awful, awful and asked to end the tilt. I think that my official diagnosis is Neurally Mediated Hypotension.
  16. My autonomic specialist prescribed adderall for me at low doses (about 5 mg as I remember). It was indeed helpful. At low doses it didn't seem to have many side-effects though "coming down" from it did not feel great. In the end I used it only when I had to do a task that required extra energy or concentration, as I have heard of people becoming tolerant to it and needing to raise the dose. One downside is that it is hard to get a doctor to prescribe it and if they do, they have to write a paper script each month rather than prescribing it electronically. He also had me try ritalin but, for me
  17. Are you seeing a cardiologist/electrophysiologist? Often dysautonomia creates cardiac like symptoms though they are often secondary. I have found it really important to have an electrophysiologist on board to help pin down the cause of various symptoms. There is also a cross-over between dysautonomia and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). I have both and, for me, sore throats seem more associated with the ME/CFS aspect of the illness.
  18. It could well make a difference if you have a comprehensive TTT. (not just the standing in place for 45 minutes). During my testing they did about 5 other tests designed to monitor the ANS when it is stressed by certain things (for instance a grip test among others). All this produced a lot of data on the functioning of the ANS and if you have a good specialist, the results could well change your treatment—mine did. Good ANS testing (or even just an extended upright tilt) is difficult as it will bring out your worst symptoms so make sure that you have the right to stop the test if it is too mu
  19. That is an interesting article. I wish that it were less expensive and that you could try a second shot. Do you mind telling us how much this therapy costs?
  20. A cardiac ablation could possibly have added to the problem. This is a question for me as well as I have Afib as well as dysautonomia and have been looking for information on how ablations affect the autonomic nervous system in the heart. I posted here about this recently. There are autonomic ganglia in the heart and these cannot be avoided during an ablation and this may be why some patients are prone to tachycardia after an ablation. This is just one thought. My autonomic specialist told me the same thing except that he advised drinking about 650 ml of an electrolyte solution before
  21. If they are going to work, they should work immediately but it is best to put them on first thing in the morning before you get upright. You might not have strong enough compression for your needs. Many of us have had to experiment with different levels of compression to find the one that works best for us. And, as @Pistol said, you don’t become dependent on them. I have worn them for years and a few times when my OI improved for some reason, I was able to go without stockings with no problem. Unfortunately this never lasted.
  22. Well, many of us do have hypermobile EDS, but there is usually a lot more going on. I had comprehensive autonomic testing and it revealed a number of problems. Does your insurance cover any of the other autonomic specialists?
  23. Yes, good to follow your cardiologist's direction, as as he/she thought it would help. At a low dose, you should be fine. And if it doesn't suit you, there are many other beta blockers. As for finding the root cause at Mayo, it doesn't have a great reputation amongst Dysautonomia patients--maybe it has improved? Have you considered going to one of the autonomic specialists listed on this site?
  24. I was given a wallet card with a list of medications that could be dangerous for someone with my genetic errors--metoprolol was one of them. These medications are now listed in my medical records. When I had a cardiac procedure a year ago, the hospital took this list very seriously. Here is what it said about metoprolol: "Significantly increased sensitivity to metroprolol--poor metabolizer. Based on the genotrype result, this patient is at risk of excessive beta-blockade when taking metoprolol at standard dosage. Consider alternative beta-blockers such as bisoprolol or carvediol, or prescribe
  25. Yes, it will lower your pulse “across the board” so you and your doc may have to experiment to find your sweet spot. One note about metropolol—it is metabolized through CRP2D6 and some of us have a genetic error in that pathway which makes that a problematic choice for a beta blocker for those affected. Have you ever had any genetic tests? This came to my notice when my cardiologist did a Pharmacogenetics test and I did have an error in this pathway. She was just about to prescribe a beta blocker so she chose propranolol instead of metropolol. I am glad that I have had this testing as it point
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