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gofl1

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Everything posted by gofl1

  1. Via some means of sensory stimulation. The key will be overcoming sensory adaptation, which is essentially when your brain tunes out a repeated stimulus so it can focus elsewhere (ie. holding an ice cube will be distracting at first, but you quickly stop noticing it).
  2. That's what I was thinking. I got tired of the ssri merry go round (although they did seem to help my heart rate) and started experimenting with cbt techniques to overcome some of my periods of anxiety. I found that a combination of distracting myself to get over the hump of the worst anxiety and then accepting that the sensations I had been experiencing were anxiety based was the most helpful. Distraction just wasn't as easy to accomplish in a lot of situations.
  3. Sounds like it could be related to hyperinsulinemia or hypoglycemia. When you have high insulin levels, which can can quickly drop your blood sugar after meals, your body sends signals to keep eating in order to keep your blood sugar up. Hyperinsulinism can also lead to weight gain. I have been struggling with some similar issues and am waiting to see an endocrinologist to get some more answers.
  4. Hey everyone, I have had an idea floating around for a while regarding anxiety treatment and thought I might finally solicit some feedback. In addition to my pots issues, I have dealt with on and off anxiety for a few years now. Since my anxiety started I have noticed that my symptoms (non pots type stuff) nearly disappear when I am fully distracted. I struggle with my thoughts constantly being directed to my own internal dialogue/sensations, and when I can pull my focus to the external I feel so much better. Getting to my idea, do you think a totally hidden, wearable device that helps to distract you could be effective? Playing a game on my phone or something similar can be helpful, but in many situations particularly when with others, they just aren't an option. They are also easy to pull yourself away from and go back to focusing on your anxious thoughts. This is just a theory at this point, but I feel like a small portable device that gently coaxes you to focus on it rather than the constant hum of anxiety could be a great tool to get you through tough situations and start improving your thought processes. It might also be helpful for other types of rumination/racing thoughts. Would love any feedback.
  5. One of my first posts here a long time ago was asking if ssri's could cause dysautonomia. I started on zoloft during a heavy bout of anxiety that came out of nowhere and my body went nuts. I had never experienced or at least been aware of my heart beating rapidly until taking those first couple doses. After only a few days of taking it I stopped and experienced symptoms that generally only hit people trying to taper off after months or years on ssri's (heavy duty brain zaps etc.). Long story short after months of feeling horrible I reluctantly started on Lexapro. I had my doctor give me the liquid instead of pills and started at literally 0.5 mg. I eventually worked my way up to 10 mg, stayed there, then slowly tapered down to 3 mg which I was on for about 6 months. That long wean up and down really seemed to help stabilize my entire system and undo what that brief experience with zoloft had caused. Granted this is totally anecdotal. Two months ago I stopped the Lexapro completely and now feel better than I have in a long time, but I do believe the lexapro helped calm everything down. It is also widely considered to have the fewest side effects thanks to its specificity of serotonin receptors for those considering trying an ssri.
  6. Marijuana often causes orthostatic hypotension and tachycardia in typically healthy people so it likely would hurt rather than help a lot of people on this forum. I'm not sure what all of your symptoms are but there are a good number of treatment options to help with dysautonomia. Exercise has made a world of difference for me along with beta blockers and diet changes.
  7. I saw Dr. Tullo about a month ago, he was fantastic. He didn't want to change anything I am currently doing but he was extremely knowledgeable and his bedside manner was wonderful. I also had bad brain fog, felt like I was floating around in a cloud all day. High dose fish oil and b complex vitamins have been very helpful for me.
  8. I also have gastroparesis. My symptoms are primarily crazy belching after meals (fermenting food) and reflux along with bloating. The german herb Iberogast (bought in on Amazon) and acupuncture have been amazing for me. I recently stopped acupuncture (mainly because I was doing really well) and the symptoms are starting to come back. Some clinical reports have indicated that acupuncture can completely normalize gastric emptying times.
  9. If you are in NYC you might consider trying to schedule an appointment with Dr. Tullo in West Orange NJ. He specializes in dysautonomia and is likely easier to get into then the NYC docs. I just scheduled my first appt with him in 3 weeks, but several others on the forum have seen him and had good things to say. The website www.njfaint.com
  10. What is your typical heart rate when totally calm, laying flat in bed? Any idea how much it goes up when going from laying down to standing or what your daily average heart rate was from the holter test? As has been suggested you should definitely try to see an autonomic specialist and get a tilt table test. I would also start reading up on autonomic disorders as much as possible so you can be prepared to ask questions and get the best treatment possible. Many doctors have little knowledge of these types of illnesses so sometimes you have to take charge of your own treatment.
  11. Hey everyone, I know there have been scattered discussions about Ivabradine in the past, but I just came across this case study in which a woman became completely symptom free within 2 days of going on it. I am not a big fan of the beta blocker I am on right now and this seems like such a better option. Has anyone had success getting a doctor in the US to prescribe this for them? www.benthamscience.com/open/tocmj/articles/V004/166TOCMJ.pdf
  12. Hi everyone, I started bystolic last week after being on Toprol for a year. Toprol caused weight gain and towards the end fairly frequent shortness of breath. I am happy to report that my vitals now appear completely normal. Standing heart rate is in the mid 70s and bp is around 115/70. In the past my heart rate has jumped big time, but my bp has never really been an issue. The problem is, that I now often feel like I am walking through a fog. I am lightheaded, a little woozy and my eyes just feel off. I used to rarely have this on Toprol, maybe once a week or so for a short period of time. I am guessing that this is tied to the beta blocker, but how can this be with such good bp and heart rate? Has anyone had side effects like this that went away after a couple of weeks? I really am happy with how my heart is doing, and will tough out these sensations if there is a good chance they will fade. Thanks for any advice.
  13. Thank you so much flying squirrel, very helpful information.
  14. This is a random thought I have been having, but can a beta blocker cause tachycardia? My thinking has been that tachycardia is generally a response to a drop in blood pressure to maintain equilibrium. Because beta blockers decrease blood pressure, can they cause an increase in heart rate if that blood pressure drop is too great? My pots symptoms have in general been very good lately. My tachycardia upon standing however, has been considerably worse within an hour or two of taking my daily dose of toprol. have also been dealing with increased shortness of breath and lightheadedness lately. It is almost as if my body is healing and the toprol is becoming a hindrance. Sorry if this question is totally dumb.
  15. I definitely get this occasionally. For me, it seems to be completely anxiety related. Of course that anxiety may be tied to my physical issues, but when I get anxious my breathing becomes a conscious effort. Lexapro has reduced this problem by about 90%.
  16. I think "heart condition" is the best thing to say. People get that you aren't well and automatically understand you are limited and that your condition should be taken at least somewhat seriously.
  17. I am about to start taking iberogast, which is a german product made of multiple herbs. Look it up online, apparently it is amazing at dealing with gastroparesis and stomach upset including gerd.
  18. I am in the US. I am currently tapering off toprol after six months to see how I do without it. I am just tired of being tired and I want to see if it has been causing some of my gi issues. I have a feeling though that I am going to need some other form of heart rate support. I don't know how my cardiologist will feel about the suggestion.
  19. Any other side effects so far? This medication seems like the wonder drug for me. Like you, I suffer from tachycardia but not hypotension or dizzyess/syncope. Apparently the drug is not being approved in the US because of uncertainty of whether or not it improves mortality rates for people with heart failure over current treatment options. Every study I have read though has indicated that it has a wonderful effect on heart rate without the side effects of beta blockers.
  20. I took provigil for a couple of months last year. I had no heart issues at the time and my doctor thought I had chronic fatigue syndrome. It didn't really do much. I noticed an improvement in my overall fatigue, but I certainly wasn't great. It was also very difficult to get my insurance company to approve it. It might be worth a try, but for me it wasn't too helpful unfortunately.
  21. I have been taking R-lipoic acid, which is the more bio available form, for the past week and really enjoy the way I have felt. More energy, and the neuropathy type feeling I had in my arms has improved. It might be worth a try.
  22. What's strange though, is this only happens when I get hot outside, which is making me lean towards histamine problems. I could get in a sauna and get super hot and not have this terrible pins and needs sensation, but if I walk briskly outside for several minutes, I feel like I am being attacked by fire ants.
  23. Hi everyone, I have had a bizarre problem for the past couple months. Whenever I walk around outside and get to the point that I would usually sweat, I get a pin prick sensation on my arms and torso. When I scratch my arms during these episodes, it leaves red lines. If I were to scratch my arms right now, sitting inside, there are no red marks. The sensations go away if I either go inside and cool down, or continue to heat up further and fully begin to sweat. Claritin has had no effect, and it seems like I do eventually sweat in the areas where the pins and need pain is coming from. Does this sound histamine based, or autonomic function based? I am considering spraying some benadryl cream on my arms and seeing if that helps to determine whether this allergy based. I don't get the sensations at all after taking a hot shower, or getting hot indoors. I also did not notice this over the fall or winter. Thanks
  24. Any idea what your typical heart rate is during your jog? How hard are you pushing yourself?
  25. Diet coke and diet pepsi both contain quite a bit of caffeine. That was likely the culprit.
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