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gofl1

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Everything posted by gofl1

  1. Unfortunately from what I have been told there is really no way to test neurotransmitter levels. I have heard of spinal taps giving some indications, but this is rarely done. Serotonin is an important part of the mediation of the autonomic nervous system. The science behind that is way over my head, but it seems to help stabilize everything. I am on my third week of lexapro and am really starting to see improvement. Dosages, whether for depression or dysautonomia, seem to be trial and error.
  2. Hey everyone, I have been trying to determine what a normal walking around heart rate is for the general population? I know that a resting heart rate is typically 60-90, but what do most people reach when they go about their daily activities? Are heart rates in the 100-110 range typical when walking through the grocery store? I am working hard on exercise and continuing treatment with lexapro in hopes of stabilizing my standing heart rate and was just curious what normal would be. Before all of this started I never took my pulse and have no clue what my heart rate was during the day. I know most of us here don't have normal heart rates upon standing but maybe you know how your friends or family react. Thanks
  3. To me that sounds 100% like absence seizures. I am no expert but I have read about them before and the symptoms are basically zoning out completely for a short amount of time. He probably needs a 24 hour eeg to catch it. I wouldn't give up on an epilepsy diagnosis yet.
  4. What were your symptoms that made you think your problems could be related to mast cells? I have had some allergy/skin type issues recently that have made me also consider going for a tryptase test.
  5. I think it might be worth considering the you are very sensitive to Effexor withdrawals. SNRI's are notorious for their discontinuation syndrome which can provoke crazy side effects. If you search effexor withrdrawal online you'll find a ton of articles on the side effects people can experience when messing with their dosages. It could be totally unrelated or at least playing a part in what you're experiencing.
  6. Just curious to see if anyone shakes all over when waking up, especially if you wake up unexpectedly. Since my hyper pots symptoms have developed, whenever I wake up to an alarm or noise or whatever else, I feel like a tuning fork being struck for a couple of minutes. Literally my whole body including head shake uncontrollably. This is all while still laying in bed and is much worse when I am really tired. If I wake up naturally, this does not occur. My hypothesis is that it has something to do with faulty norepinephrine release, which I am assuming has a role in waking up.
  7. Thank you so much for the words of encouragement Alex. I have an interesting update from the last 2 days that might help with my diagnose. It is starting to get warm where I live and walking around for the past two days has resulted in painful pin prick sensations on my skin when sweating, very fun. When I scratch, it leaves a red mark almost as if drawing on myself. This fades over the course of the next 20 minutes or so. I am beginning to wonder if I have some sort problem like MCAD or mastocytosis. I have worked out a few times over the past month, sweated and not had this reaction. I also don't get this when stepping out of a hot shower. The red marks are noticeable but not raised at all so no clue if this is dermatographia. Alcohol gives me some problems now, but I haven't noticed any food intolerances. The mystery continues...
  8. Wow Alex that describes my few days on zoloft quite well. I was pretty much incapable of leaving my room. What is bizarre is that I had been on zoloft for an entire year without any side effects 3 years ago. I am certainly better overall than I was at my worst in the Spring but I am far from being the person that I once was. Pretty upsetting that this is all happening during my final year of college. I am contemplating asking to try neurontin to calm my mind/body for a few days before looking into another ssri or snri. I was on lyrica over the summer because a doctor thought it was a good off label prescription for anxiety. I liked how it worked but some of the side effects didn't agree with me. I will put myself through **** for a month if I can come out better on the other side, but as everyone here knows all to well that is impossible to predict.
  9. I completely agree with you about the over sensitization. The anxiety+zoloft combo seemed to make me hypervigilant which I assume made my body go into a similar state. Therefore my body overreacts to any time of stimulation. Would a hot shower/bath typically stimulate some catecholamine release in a normal person because I get very tachy from that as well even though it was never a problem previously? My only thought as this point is to attempt a trial of cymbalta. What I have read online suggests that it works to desensitize serotonin 1a and beta adrenergic receptors. I have tolerated the beta blocker well with few side effects and it seems to help but definitely not enough.
  10. Zero orthostatic intolerance or heart issues prior to this all starting in the spring. I think I had maybe checked my pulse a handful of times up until that point. I have had asthma since I was young but it is very minor. I do have shortness of breath on exertion, but it isn't much of a problem just standing. Generally it kicks in after a flight of stairs or something like that to go along with the pounding heart. I've noticed trouble talking on the phone while walking quickly or up a slight grade. My echocardiogram, ekg's and heart exams are all great. I think the cardiologist has kind of thought this is all anxiety up until this point and treated me as such, but I don't know how constant orthostatic hypertension is all in my head?
  11. I didn't have any dysautonomia symptoms prior to the zoloft. Even after my initial onset of panic and anxiety, I had no heart involvement at all. Only after starting the zoloft, which I was on for 4 days, did this sympathetic overdrive seem to kick in. Since then I have had tremors, cold extremities, shaking upon waking up, stomach problems, brain fog/fatigue and of course a very fast heart beat.
  12. Hi everyone, I am a 22 year old male who has been dealing with the symptoms of dysautonomia for about 9 months now. In the spring of this year I developed severe panic and anxiety. I am not sure if it was stress or life events that brought it out, but I was miserable. My heart however, seemed totally fine. Hoping for some relief, I attempted to go on zoloft which I had been on for a short time a few years prior. It had worked great when I was last on it, but this time it was horrible. I developed tremors and my heart went crazy. I developed inappropriate sinus tachycardia which was diagnosed by my cardiologist and was put on toprol xl. My resting heart rate is improved but now I am having pronounced orthostatic issues which I think I have had all along. In the doctor's office yesterday, my laying down bp was 134/89 with a pulse of 100. I was definitely having a little white coat syndrome that accounted at least partially for these numbers. After standing for 3 minutes my blood pressure was 155/100 and my pulse was 134. I don't get dizzy or feel faint but I hate the pounding heart and adrenaline feeling. Exercise or walking up stairs is horrible. It seems like I have hyper pots, but my serum and 24 hour urine catecholamines as of a 2 months ago are normal. Could I just be in total sympathetic overdrive? I also have gi problems (excessive belching mainly) that I never had before. I am obviously not loving the idea of trying an ssri again but am wondering if an snri might be different enough to be worth a try? Thank you for any advice, I am so tired of doctors throwing their hands up and suggesting I go see someone else. Sorry for the italicized text, for someone reason it won't let me change it back. Edit: I should add that it seems like from everything I have read on here, I am having an abnormal response to a normal condition. My stack of test results is about 4 inches thick and nothing is abnormal except my vitamin d is low. I have not had a tilt table test although that will likely happen soon.
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