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Ssri?


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Andybonse,

Firstly, everyone is different, and therefore reacts differently to different drugs. FWIW, I was put on Celexa (SSRI) and couldn't tolerate it at all. Had terrible flushing reaction and found myself on bathroom floor (or should I say husband found me) sweating profusely and couldn't move until hubs picked me up and put me on the bed. It felt like my blood was rushing through my body and I was jittery all over. Horrible feeling. Never took it again. Later, another dr. prescribed Prozac (SSRI) that I never took, she obviously hadn't read, nor heard me when I told her I couldn't tolerate SSRI's. The GP that I see currently put me on Xanax .5 mg 3x/daily (and one more if I need it) and for me, it has been a life saver. He told me that Xanax is a tried and true medicine that has been around forever with little side effects and it is fast acting. I've been on it for two years now.

Again, everyone is different. If you have a good dr. that listens, make sure to bring up any worries with him/her. Some people have had good results using SSRI's, unfortunately, I'm not one of them.

Hope you get some relief soon.

Be well,

Bebe

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Guest Alex

My dr prescribed citalopram more than a year ago. I took it for a week and had severe symptoms from it - symptoms that made my POTS a walk in a park - swings in BP and HR, shortness of breath, insomnia, I was agitated, jittery, constant mood swings (I was going from laughing to crying at the flip of a switch), really nasty overall experience. All those problems subsided about 48 hrs after I stopped taking it.

Please keep in mind though that everyone is different and I read many reports of POTS patients benefiting tremendously from taking SSRIs.

If your dr prescribed it for anxiety and not for POTS (if my understanding is correct), you might want to talk to him/her and discuss possible alternatives, and/or concerns you may have.

Hope this helps.

Alex

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That's weird that you were getting such a severe reaction from it. I'm getting some side effects from it but nothing like what you are describing(Headache for the first 3 days, tingling, ringing of ears, insomia, all of which subsided after a few days). I guess not every med is for everyone

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Guest Alex

Snowdrifter trust me it was nasty.

I got reactions that were borderline serotonergic syndrome from metoclopramide and from tramadol. 2 ER visits later I know not to mess with my serotonin levels ever again.

Alex

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If you do a search for SSRIs on dinet, specifically Lexapro, I have written a TON about it. It is very, very common to experience pretty severe side effects for the first month. For most POTS patients, those side effects subside completely by the month mark. Just take a benzo to get you through the rough part. Unless you are having symptoms of allergic reaction (itching, welts, ect) stick to it! Those symptoms go away completely and it was one of the best drugs I have ever taken for my POTS.

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I started several years ago on Lexapro (family doctor was treating chronic insomnia/panic attacks at the time - pre-POTS-diagnosis). Eventually I switched to Citalopram because I changed jobs and coverage for Lexapro got real expensive. That seemed to do fine for a while, but after a while the insomnia returned. I switched to Nortryptaline for a couple of years, but some of the other side-effects became too bad, so my doctor switched back to Citalopram a couple of months ago. This time the side-effects were horrendous, splitting headaches, nausea for at least a week and terrible insomnia that continues to this day.

It does seem to help some of my POTS symptoms though - including anxiety and depression that may or may not be POTS-related. Like many pharmaceuticals, it's a trade-off. And from what I can tell from others on this forum, we all seem to respond differently, so you kind of have to try it out and see what it does.

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I've always had a question about SSRI's. Maybe if someone can shed some light...it can be helpful for andy as well as others.

One of the EP's I saw (he concurred with POTS dx.) prescribed Celexa. He told me that many times this med. helps POTS, he said that he was not putting me on it for anxiety or depression although, it might help that as well (since one of my primary, at the time, symptoms I couldn't get a handle on was anxiety). I'm kinda flutter-brained right now, I hope I'm making some sense. When I asked what I should feel after taking med, he told me, I should feel like my normal self. As stated in above post, I had a terrible reaction. He had no explanation for my reaction and told me that I shouldn't have felt what I felt. Gotta love dr.s responses! :)

Here's my question. Since SSRI meds are for seretonin, wouldn't it behoove the dr.s to give a test (if there is such a test) to determine our seretonin levels before putting us on this type of med? What if our levels are fine, would taking this med give us more than we need or less than we need in which case might cause some of us to have adverse reactions. Just wondering...

It is all too common, in my case anyway, that dr.s are so quick to prescribe a pill without doing any type of testing ahead of time. I also know from experience that treating POTS is oftentimes on a trial and error basis. I just hate to see so many of us go through adverse reactions when, quite possible by doing a simple test would've determined that we, in fact, don't need certain meds to begin with. Am I making any sense at all???

Any insight is appreciated.

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Bebe127- there is no way to measure synaptic levels of serotonin. The level that you excrete in your urine does not correlate in any way with what is going on at the micro neurological level which is the level you are altering when you take an SSRI. SSRI's don't actually increase the level of serotonin in the sense you are thinking of. They prevent the re uptake of it by neurotransmitters in your brain so that more is floating around in the synapses and thus increases feelings of well being, calmness, etc. Hope that helps...

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Thank you Julieph85! Possible dumb question ahead :)

How do the dr.s know if you need more floating around? I'm obviously fairly ignorant when it comes to synapses and whatnot, but what if someone has too much floating around already, would that cause problems, or does it not matter? Conversely, if a person didn't have enough floating around, then I would surmise that it would be helpful?

Just trying to understand :) Thanks again!!

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Bebe, I am like you. Not really understanding how the SSRI's work. But both times I tried them (lexapro and the other one mentioned) I got extremely ill. More of hyper pots. Sweating, super high bp, chest pain, heart racing and yet no energy. I tend to think I have some type of serotonin syndrome reaction that was listed on the flyer as rare.

I have had that my reaction listed on my medical papers so no one tries to give me those types again. I am wondering if maybe xanax may help me. In the past I used ativan, but I felt like it was just adding to my overall tired feeling and I didn't really help. Some one mentioned xanax, but to be honest, my anxiety would stop if this terrible "flare" would stop or at least if I knew for sure if what is going on is even POTS related. I am thinking I may have an additional issue.

Anyways, interested in the description on how ssri's help some and not others.

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I want to second dani's post above.

I am on an SSRI and it gave me my life back. But the first few weeks were POTS times ten! It was awful, and only a benzo got me through it. only at 4 weeks, did I see a light at the end of the tunnel. A full 8 weeks until I was better, but since then, I am almost completely back to myself. I actually had to try a few until I found one that did not make me totally fatigued or gain a ton of weight. Now, I am on Prozac, 20 mg. I recently tried weaning down, and within a week, I was starting to feel POTSy, so I went right back on.

Search the site, you will see this info repeated a lot.

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Joann,

Just curious, what flyer are you referring to that has something about seretonin syndrome?

About the Xanax, for me at least, it has been a lifesaver. I would hazard to add that I think that is what helps me most. I am on .5mg 3x/daily but dr. said I could take another if needed. At times I take an extra in the am and it smooths me right out. I was even able to enjoy a Caribbean cruise a few years ago once I figured out I needed to double my dose in the am. This is not to say that I don't have myriad other symptoms, although my anxiety, I would say (depending on activity and/or stress) has decreased about 50%. Everyone is different, but I'm going to throw a suggestion out anyway...If your anxiety was more under control, do you feel as though the flare might be curtailed? Anxiety for me can be a tricky bastard, but once I am relaxed (via Xanax) I seem to do much better and am able to deal better with things. It doesn't make me tired or high or anything, just makes me feel better, more in control.

FWIW, I was formerly totally against any drug of this sort, but I have realized over the last two years that if that is what is needed for me to live a relatively "normal" life, then so be it. I know too that Xanax can be addictive, from what I've heard, although I am very careful and only take one double dose (usually in the am) if it is needed, plus I'm on a low dose to begin with. I never go over that limit that I have imposed on myself.

I know you've been having a time lately and I sincerely hope you are feeling better.

Hugs,

Bebe

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I believe there is an adjustment period with SSRI's unfortunately for most people.

Like others have noted too, for me, I felt so much worse on an SSRI initially. Panic like symptoms, felt much weaker, more dizzy. I believe one side effect of an SSRI CAN be autonomic dysfunction! However, the bad side effects, for me, went away slowly after a month and then I started to feel much better, and my POTS symptoms became much milder.

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  • 2 weeks later...

I just tried lexapro for the first time yesterday and I'm not going to take it anymore.

After about 15 minutes, my hands became trembly (that only lasted a little while though), then I started having to go to the bathroom every 15-30 minutes for the next couple of hours and then the dizziness started and my face numbness got worse.

I drove later that night and I just didn't feel 'right', and I've got to be able to drive my kids around. I told the Doc that and he assurred me that it wouldn't affect my driving---yeah, right.

I don't think I can tolerate it enough to get through an 'adjustment' period.

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My doc prescribed me lexapro the other day cause he's very anti benzos (which do seem to help me). Read the leaflet and it said to be careful taking it if you had heart rate problems standing up. Needless to say, that put me off. €80 for nothing.

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I'm curious about this as well...I've been on lexapro since I was 17 and only found out about the POTS when I was 22..and then didn't start feeling the effects of POTS until 24. So...I really have no idea if the SSRI or benzo that i'm on is helping or hurting...i've also heard benzo's can contribute to autonomic dysfunction. who knows. Also, am I the only one who went on lexapro and had total smooth sailing? it sounds like everyone else's experiences with getting used to it the first month were awful.

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The only SSRI I even tolerated slightly was Prozac. And that was years ago, when I was in much better shape POTS-wise. Everything I have tried since has given me an insanely bad hyper-POTS like episode that lasts until I can get off of the medication. My heart rate shoots up to 200, I have to use the restroom non-stop, I get flushing (which I never usually get). I also thought this sounded a lot like serotonin syndrome so I have always gotten really freaked out and discontinued. The side effects may pass, but for me they were just too awful and debilitating to put up with for a month or more just to get slight relief.

I currently take a benzo drug (am discontinuing to avoid severe dependence), and that honestly helps me a ton. Lowers my HR without lowering my blood pressure at all. It seems people who do poorly on SSRI's do well on benzos, but I would not recommend them for long term daily use because weening off is at the very least annoying.

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The only sure way that I knew my son had problems with dopamine and serotonin levels was through a spinal tap that the neurologist did. His levels were below normal so this correlated to the blood test that our cardiologist did. My son takes Zoloft and it does help. These levels do affect POTS according to Dr. Grubbs. If I remember correctly it affects hyperpots also. If you goggle Dr. Grubb and postural orthostatic tachycardia syndrome, you should be able to find his articles. After reading one of those articles, it helped me understand how dopamine and serotonin affected POTS.

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