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Sushi

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Everything posted by Sushi

  1. After work in the atria, there will be a healing period in which arrhythmias are more likely. (I just had a cardiac ablation so am familiar with this). This period is about 3 months. When they do trans catheter cardiac procedures they actually create a puncture in the atrial wall and strangely some get migraines or migraine auras during the healing period. So, perhaps this problem will resolve in a few months as the atrial wall heals.
  2. No, I got concerned by the effects on bone density. Good luck if you try it.
  3. Strattera can work for certain patients but they are the opposite from most with OI in that they are low in norepinephrine and have very active parasympathetic systems, rather than sympathetic systems. Strattera worked very well for me but…it is a powerful drug and one can get a lot of side effects if you jump in with a standard dose. My autonomic specialist started me with a half capsule (yes, I had to open them) every other day and even that was too intense at first. I took that dose for about a week and then worked up to a full capsule of the lowest dose over about a month. So I really couldn’t judge the efficacy for about a month. You have to taper off it even more slowly. But for me, it completely took away OI.
  4. PT can be especially helpful if you also have Ehlers-Danlos Syndrome as by strengthening muscles, you can take the pressure off ligaments and joints.
  5. Could you indicate which ones are histamine-reducing? Thanks!
  6. I don't think so as an autonomic specialist will be up on all the various forms of dysautonomia whereas few cardiologists are (unless they specialize in the autonomic nervous system. There are tests that differentiate different forms of dysautonomia but it is doubtful that you will find them outside of the practice of an autonomic specialist.
  7. I’d say particularly if you don’t meet the criteria for POTS—I don’t either but a specialist was able to tailor treatment for what I DO meet the criteria for. Sorry to say, but there is almost always a long wait to see a Dysautonomia specialist as there are so few of them,
  8. I also do not have POTS but rather NCS or neurally mediated hypotension. A lot of these categories cross over. I don’t actually pass out because I get enough warning in order to sit down – if I didn’t I would pass out. Yes, NCS is sometimes responsive to different treatments than POTS. You are not alone here!
  9. The main reason to see a Dysautonomia specialist is because they can put everything together looking through the lens of Dysautonomia, drawing on their experience of seeing hundreds (and often thousands) of patients with similar problems. The autonomic nervous system is complex and a specialist will be following the latest research. I had seen a number of cardiologists before finding an automatic specialist and the difference in their approach was impressive. My autonomic specialist was able to analyze my tilt table test (and other forms of autonomic testing) correlating my responses second by second and coming to an understanding of what my autonomic nervous system was actually doing in different situations.
  10. If you could find that in your medical records, that information might be helpful now. Arrhythmias are electrical disturbances, not physical abnormalities, so many factors can influence them. General Dysautonomia doesn’t sound like a diagnosis you would get from an autonomic specialist. A more precise diagnosis might point you to a treatment that could help. I have orthostatic intolerance but my Dysautonomia specialist narrowed it down to neurally mediated hypotension with the parasympathetic system trying to take control. This pointed to a treatment that helped a lot. Hope you get more clarity as to what is happening.
  11. Jumps from 145 to 35 might indicate Tachy-Brady or Sick Sinus Syndrome. I got that diagnosis, followed by a pacemaker, but I also showed chronotropic incompetence or the HR not reaching normal levels to support the exercise I was doing (treadmill stress test). What sort of arrhythmia do you have? I just had an ablation for arrhythmias and it has also helped orthostatic intolerance very noticeably.
  12. Yes, very cool and also might possibility point to new ways to treat some forms of Dysautonomia.
  13. Update after 5 weeks: I have pretty much returned to my pre-ablation level of energy. It was a huge energy event with travel, missing sleep, general anesthesia and intubation and a host of potent drugs. Aside from hoping to treat arrhythmias (Afib and flutter), I was very interested to see how cardiac ablation might affect my Dysautonomia as they ablated the autonomic ganglia in the heart. My interim report is: no arrhythmias so far (I was having them daily) AND, I am able to stand up for about 3 times as long before my BP starts to drop—I have not had to suddenly sit down since the ablation. This is very interesting and while a couple of EPs are doing ablations specifically for Dysautonomia, I’m not sure whether they have been able to arrange insurance coverage. But, for anyone who is considering an ablation for arrhythmias, this is good information to keep in mind and ask about.
  14. I would be left panting on treadmill tests and it would take a bit to return to normal breathing.
  15. Just a thought--are you able to record your heart rate as well during sleep and is there any correspondence? Also, have you had your oxygen saturation monitored during sleep? There are hope tests that will do this.
  16. I have chronotropic incompetence. It can be easily spotted on a treadmill stress test. After 3 tests over about 9 months, I was given a pacemaker. Probably not the answer you would like, but it was a tremendous relief.
  17. Note: Paxlovid interacts with a lot of other drugs—if you consider it, good to run it through an interaction checker. It has major interactions with two drugs I am taking. Edit: I see that this was discussed in another thread. It is too bad that it is not an option for some of us due to the interactions. Best wishes Mike!
  18. Glad you can use a laptop—apps can clog your mobile devices. Thanks for asking about my ablation. I hadn’t yet posted about it as, going into such a major stressor, we always wonder if it will create a long-term setback or whether we will regain our “normal.” As expected, it was really difficult energy-wise as I had to both travel out of state and undergo a significant cardiac procedure. Although it has only been 11 days, I feel confident that I will regain my “normal“ as each day I am closer to it. I was given many medications during general anesthesia as well as other drugs before and after – so clearing these medications is part of regaining “normal.“ The EP had to do a fairly extensive ablation (62 minutes of burning) as I had multiple sites of both atrial flutter and Afib. The “mapping” process is fascinating and essential for identifying errant electrical activity. He had warned me that because I had a history of mitral valve disease, it was very likely that he would need to do an aggressive ablation. I didn’t fully understand the connection until I read his report which said that I had moderate atrial scarring and, after researching this, I found in articles that the scarring would have most likely been caused by mitral valve regurgitation. This is something that those who have mitral regurgitation might want to discuss with their cardiologists. I did not have a mitral valve repair until the regurgitation was severe and, apparently, by this time some scarring had taken place. The significance of the scarring is that it sets you up for arrhythmias. I think I will make a separate post on this as many people here are likely to have mitral valve regurgitation. The care I received was superb and, reading the EP’s report, I am totally impressed with his level of skill and knowledge and very glad that I opted to travel to someone regarded as one of the best in the field. They were very cognizant of my Dysautonomia. The doctor came to my room twice after the procedure to talk with me. The big question that I had was whether this procedure would affect dysautonomia. I can say with confidence that it did not make it worse but I will have to wait until I’m over the fatigue to assess whether it made it better.
  19. @MikeOLooks interesting, especially as it seems you can check more than a couple of drugs together—which many interaction checkers don’t allow. I looked at it on an iPad and it seems to only be an app—is that correct or can you also use it web-based on a computer?
  20. Well, let’s see if this has any effect on my Dysautonomia! I’m having it because of Afib, but the EP (one of the best in the US) will be ablating the autonomic ganglia in the heart during the procedure. I am curious, hopeful and yes, I bit nervous as I prepare to fly out of town for this procedure. The EP is well aware that I have Dysautonomia and EDS.
  21. Mine is crammed full: Dysautonomia (I don’t have POTS), Afib, Pacemaker, MitraClip, and 2 drugs—an antiarrythmic & an anticoagulant!
  22. I also find that exercising is very important, BUT, I think it is important to do so little that you don’t get symptoms afterward. Even starting with two minutes a day of some simple type of exercise and then building up perhaps a minute a week or whatever you can tolerate, can I help you build up very slowly overtime and strengthen your muscles. It has taken me over six months but now I can do simple exercises for 25 minutes a day. But, if I have to do physical chores that same day I do skip the exercise as it then becomes too much.
  23. I also have these swings and am very often high in a doctor’s office. For me, yes some level of white coat syndrome, but also, I always drive myself to appointments through city traffic and have a caffeinated drink before driving to help with concentration. I think both the stress of driving and the caffeine play a role.
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