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Ssri Induced Hyper Pots?


gofl1

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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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It definitely sounds like you have the symptoms of hyper pots ( which you don't have to have high catecholamines to have). I have very similar symptoms to yours and I also have generalized anxiety disorder and had panic disorder as a teenager. I've never heard of an SSRI causing pots but you said you think you had dysautonomia prior to the SSRI? What were your symptoms? How long did you stay on the Zoloft after it causing the pots symptoms?

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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.

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That is my symptoms as well- I also shake all over as I'm waking up. Did you have any orthostatic intolerance prior to the Zoloft? Also, do you experience shortness of breath with the tachy when standing? Sorry for all the questions, I'm just trying to help you figure it out and compare it to my own symptoms. I'm sorry you are in this situation. I'm also young with pots and it has ruined my mid twenties to say the least

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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?

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It definitely sounds like the Zoloft triggered this and unfortunately you may never know why. It also sounds like sympathetic over activation which is what a lot of us hyper pots experience. How have you done with the beta blocker? I have hyper pots and cannot tolerate beta blockers at all as they make my dizziness and orthostatic hypertension worse. I don't think the Doc is completely off because you said you do suffer from an anxiety disorder but he does need to acknowledge the orthostatic symptoms as they are NOT related to your run of the mill Anx disorder. Because I also have a comorbid anxiety problem doctors have also blamed my pots on that as well. I have a personal theory on ppl that present as hyper sympathetic pots but it Is just my theory so it's a take it or leave it kind of thing. I think that what I have and what a few others have is not dysautonomia. In fact my Ans is functioning great which has been proven through autonomic testing. I think some of us have a yet un-named condition that causes excess sensitivity to catecholamines. Every situation that you describe getting tachy and dizzy in is a normal time to have a catecholamine release. It is as if the body is too sensitive to it and is over constricting in response. I think it is a disorder of primary over sensitization of the SNS and that's it, not pooling, hypovolemia, dysautonomia, or vasodilation and I think it is a problem with serotonin. I could be waaay wrong, but it is just how I feel about my own body and what a few others have described. Good luck with everything and I think the tilt is definitely necessary for you :)

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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.

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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.

The shower will def cause catecholamine release because the heat lowers your Bp. Even normal ppl get a little tachy in the shower because of this other times catecholamines are released that you may notice symptoms- exercise, after eating carbohydrates, upon first waking, when initially standing up, when raising arms over your head, any time your Baro reflex is triggered, any time a vagal maneuver is performed, any time you are nervous

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Interesting. I guess initially SSRIs can increase sympathetic stimulation rather than calm it down so perhaps if some latent issues where present it might bring them out or trigger them? Just a guess. Some folks talk about serotonin receptors in POTS being abnormal. I wonder what would have happened if you were able to stay on zoloft - whether it would have kicked in and calmed you down or not.

Serotonin is an area that hasnt had much research in POTS but I remember I heard that Blair Grubb finds many of his more hyper patients have signs of low serotonin. i think I may but im not sure.

ive never tried an SSRI. I knew a guy at uni who had a very bad reaction and it put me off them. But my wife says im grumpy sometimes so wants me on one LOL. Ank spond doc said it can help with sleep and i must say i need all the help I can get in that area - 10 hiours sleep and I wake up worse most days.

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here is my story while on celexa:

day 1 - nothing special

days 2-7 - I was basically in bed 24/7 experiencing horrible, frequent (every couple of minutes) changes in bp and heart rate ranging from 90/60 and 60 bpm to 148/98 (or so) and 135 (or so) bpm. I'd also get terrible shakiness mainly in my legs, but at times I'd feel like my whole body would shake along with the bed I was in. I was unable to get a good night sleep - I'd wake up every couple of hours to something similar to a panic attack - tachycardia, shortness of breath, shakiness, chest pain, waves of heat going trough my body, burning muscles in my arms, legs, upper part of my chest, neck and upper back, pain in my arms, legs, chest, back, etc, headaches that would wax and wane as my bp would go from high to low, to high again in a matter of minutes. I tried sleeping in a recliner but that did not relieve any of my symptoms, and finally on day 8 my dr decided I should stop taking the pills. I still had symptoms for 3 more days (it took a while for my body to eliminate the drug completely), and - knock on wood - the symptoms have not returned ever since. Not to mention I felt exhausted the whole time.

my understanding is that most people don't have such "violent" reactions/side effects to ssri's, celexa in particular, so I guess that should make me feel special :rolleyes: .

I hope you find some answers soon, . Good luck with your challenges and keep us posted.

Oh, and welcome to the forum.

Alex

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There is a website where a guy with CFS/OI from England or Holland charts his results from all manner of medications, herbs, supplements and even illegal drugs. He lauds cocaine as an energy booster (who would have figured...LOL) and I think he did try MDMA as well but i cant remember the results. Since that works by boosting serotonin as well I just thought Id mention it.

I know some folsk that had bad reactions to SSRIs and I know someone with GAD that felt the best they had in years after two days on one. I frequently hear that they make matters worse for POTS before they make them better. But perhaps for some the better never comes and some seemed predisposed to serotonin syndrome.

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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.

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gofl1,

sorry to hear you had to go through this kind of experience. For me the week I was on celexa has been the week from **** and I was glad when my dr told me to stop it. I'm pretty sure there are other options in terms of medication that might help you with your anxiety issues, or if you don't want to take pills, then maybe you can try a naturopath. Either way, talking to your dr and explaining to him/her what you've been through might be the place to start.

Hang in there, I'm sure you'll be able to find something that works for you. I can understand your frustration being so close to graduating, but try to stay positive, and post here whenever you feel like venting off as I know you'll get a lot of support from the members of this forum.

Best of luck,

Alex

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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...

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SSRI's usually take at least at least 7-10 days before the therapeutic effect is known. During that week they are flooding the brain with serotonin, which in people who are sensitive (like we are) may give symptoms of increased heart rate and blood pressure. After the brain gets used to this, the nervous system regulates itself and the therapeutic effect can be seen. If it is true that high serotonin = lower norepinephrine, then in theory the body would regulate itself to produce less norepinephrine. Of course with those kind of vitals you would be hard pressed to find any doctor willing to keep you on it long enough to find out, lol :rolleyes:

Dr. Randy Thompson from the POTS Changes video describes the use of SSRI's in terms that are easy to understand. Here's a link to the video:

http://www.youtube.com/watch?v=4rtcw23CFqo&feature=related

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I'm glad they put the Changes video on U-Tube. I've been trying to get another one because I gave mine to a doctor. Now, everyone can look it up and see it. This of course is mostly for those with OI type of POTs, but, it does give a good overview of what we all go through.

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I can't tolerate anti-depressants. They really do a number on me.Both the ssri or snri ones . I've long long been telling docs that I don't need anymore serotonin in my system. (I've done the excess serotonin tests a couple of times and my levels are fine). I believe that I need the reuptake of serotonin like I do a hole in the head.

I take low dose opiates for chronic daily migraine but for two periods in the last 5 years -- my migraines have been bad for longer than that -- I have taken periactin (cyprohetadine) for migraine prevention successfully. I"ve tried to use it a number of times but it's only worked twice, the first time for 3 months, the second time for longer, but then, each time, it stopped working and I had to switch back to other pain relief. I just tried it a short while back and it didn't work for migraine prevention so back on the opiates again. Sometimes periactin is given to teenagers for migraine relief. It never did work as a reliever for me but did help with prevention and I will try it again in 6 months or so to see if it's going to work again. For migraine preventative purposes I needed to take it on a daily basis.

My point (sorry, sometimes it takes ages to get to my point) is that cryproheptadine is a serotonin antagonist. I believe that although I do not have too much serotonin in my system (according to the tests) I'm highly sensitive to addition of more. But strange that the amount that I do have seems that it might play some part in my chronic daily migraine problem. As the agonist -- when it works -- has that one effect of stopping those migraines (and as a bonus I don't have the otherwise ever present hives here and there on my face and body I have just learned to deal with by ignoring them (when they get worse it's a whole other story). It's a pity I can't take anti-d's because I do get depressed and could do with an anti-d that doesn't effect me negatively.

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