Ssri - Got Better - Got Worse

[Altruism]

Anyone ever experienced it? I started very low at 12.5 mg Sertraline (Zoloft) and upped to 50mg in 17 days. Initially it made my severe anxiety attacks completely unbearable, but about 10 days later I felt some improvement. I was feeling less nervous. Now, a month later, the anxiety is creeping back up. Does it mean I need a higher dose or simply it's not working? I'm taking Clonazepam 0.5 twice daily to help me survive the day. I can't live without it at this point.

Thanks.

I'm desperate. This is the worst gift for my 30th bday I need this to work...

[Anoj]

i haven't been here in a while. i'm weaning off of my zoloft right now and feeling terrible. (getting off after gaining close to 100 lbs) it helps me tremendously. if it weren't for the weight gain it would be a miracle drug for me. i never went higher than 50 mg though. the more you take, the harder it is to get off, imo.

[Jan]

I HATE SSRI's, they worsen my symptoms and give me severe anxiety attacks like I have never had.

I LOVE Benzodiazepine's, they make all my symptoms milder, I believe by calming my nervous symptom, Got rid of anxiety attacks and racing heart.

Doctors are under a lot of pressure to prescribe SSRI's, and NOT prescribe Benzo's. I think this was due to thinking Benzo's caused dependency but we all know now that SSRI's can be hard to withdraw from also. There is a lot of advertising that claims SSRI's are miracle drugs. I think it is false advertising because there is tons of money to be made off of them by drug companies.

I have done a lot of research on SSRI's, mostly related to depression,( which I don't have) but it is what they have researched. There are studies that show placebos work better than SSRI's. Many years ago, Newsweek had a whole issue on SSRI's and how they show NO benefit when compared to placeos, or even St. John;s Wart, I personally feel that their usefulness is questionable and their side effects minimized by the drug companies. If you talk to ANYONE who has used SSRI's they will tell you of multiple side effects they have had.

I am terribly biased here because I have seen people's lives destroyed by personality changes caused by SSRI's.

[Anoj]

i am not a fan of SSRI's either, except that they help me so much with dysautonomia. i do agree with a lot of what jan said, in that doctors prescribe them like candy and deny their addictive qualities. everyone knows withdrawing from them is terrible. but, instead of calling it withdrawal, they call it "discontinuation syndrome." WHAT'S THE DIFFERENCE?

[Angela]

That is interesting. I was considering checking with my neuro about an SSRI to wean off klonopin (currently on 1mg and it was a godsend for me) I started off on SNRI and klonopin but got off the SNRI didn't have a withdrawal but it did nada for me. Now I don't think I am going to mention the SSRI (which I was a little uneasy about regardless)

[Jan]

I am super biased and opinionated so take what I say with a grain of salt. I think the grain of salt will help more than SSRI's. lol

[Altruism]

Thanks for your opinions, however, there are too many success stories with SSRIs helping anxiety and POTS to ignore. I like this forum, but I also believe the majority of the opinions are biased. We need something to believe in, be it SSRI, benzo, doctors, etc. At least I do..

I'll give Zoloft another chance, I'm upping my dose now. It SHOULD work, my therapist today said it's not uncommon to feel better for a while, then the body adjusts to the dose and needs more, so all you need to do is reach your own therapeutic dose. If mine is 75mg or 100mg, it's ok. I'm still taking about 60mg and feel awful, but I'll try to survive. I have no choice, I can't live on klonopin forever. I WANT to believe it will work.

Anoj, how does an SSRI improve your dysautonomia? Lower HR? More ability to stand up? Fewer symptoms? Thank you.

[Altruism]

There are many people on SSRIs on this forum, so ... bump. Need more opinions. Thanks.

[cupcakemomma5]

Altruism,

I am actually on an SNRI (cymbalta), and find its working for me. Now saying this I was on Celexa for 10 years treating anxiety I never really had (long story).

After my lovely month stay in hospital, I was switched to Cipralex, which was ****. I actually became depressed on these pills.

I also have a prescription for clonazapram as needed.

I am one of those people that you need to do what's right for you. Having a new baby,being dx with POTS, post partum, all of this is hard on a body. If you feel comfy and the therapist was okay with upping the dose then try. The only down side is that it does take time for SSRI and SNRI to see/feel the either benefit or side effects.

I wish you all the luck. Keep us posted.

[ramakentesh]

I have done a lot of research on SSRI's, mostly related to depression,( which I don't have) but it is what they have researched. There are studies that show placebos work better than SSRI's. Many years ago, Newsweek had a whole issue on SSRI's and how they show NO benefit when compared to placeos, or even St. John;s Wart, I personally feel that their usefulness is questionable and their side effects minimized by the drug companies. If you talk to ANYONE who has used SSRI's they will tell you of multiple side effects they have had.

i agree that they are over prescribed, sometimes issues regarding side effects or withdrawal symptoms are swept under the carpet but I know of several people (well 4 actually) who have all had their lives changed by SSRIs for depression and anxiety. They do work and when they do they work very well or at least better than other options.

I know of two people that got great benefit for POTS from Zoloft and I know one with severe hyper POTS who was greatly improved on an SNRI believe it or not!

the weirdest story i heard is that a medication found to be a serotonin transporter ACTIVATOR also allievated symptoms of depression. Weird?

[abbyw]

I am one of the SSRI/SNRI success stories. I am on my third try - attempting to find the right med. Right now I am on Prozac, and I am very happy. Losing the weight from the Lexapro, and better for me than the Effexor. The only side effect for me right now is fatigue. But I can walk, and stand, and work. I am not 100% where I was before POTS, but I am 90% there. Without it, I am completely not functioning. I am not saying that SSRIs are not over-perscribed, and that they are not hard to wean on and off, it was horrible, but for me, it has helped me get (most of) my life back.

Hope you find success too....

[ramakentesh]

Great to hear - thanks Abby! ive wondered about trialling an SSRI. Dr Grubb thinks they are the best overall treatments (well combined SNRI/SSRI)

[corina]

The SSRI works wonders on my standing hr. It's the only thing so far that keeps it in control. The octreotide covers the bp dropping. I still have issues but those two being reasonably in control makes my life significantly better!

[bebe127]

Altruism,

I think it is important to remember that everyone is different and reacts differently to different meds. I'm sure I'm not telling anything you don't already know where that is concerned I agree with cupcake, if you find that it is helping, then stick with it.

I for one, didn't have the greatest experience when I was put on Celexa. I asked the dr. what I should expect, and he told me nothing, I should feel like my old self. After a few days of taking it, I found myself on the bathroom floor sweating profusely (I mean completely drenched), I felt like I weighed a ton and couldn't move, and it felt as though electricity was running through me. It was horrible, luckily my husband was home. It was so scary for me and for him. I called the dr. and he acted like it was no big deal, said that none of what I was experiencing were normal side effects and to just stop taking it and resume a few days later on a lower dose. I did what he said and I still felt worse. I admit, I didn't take it long at all and have read that it can take a month or more to get used to and begin to work. Maybe if I had given it more time? I am now on Xanax and I have found that that works really well for me. It's an old medicine and I haven't seen it on any medication warning commercials as of yet It is fast acting and I can take more if I need to without having any problems. I also had a dr. prescribe Prozac even after I expressed my experience with the previous SSRI, gotta love dr.s that listen to you!! She also put me on Buspar, which didn't do a thing for me.

I have a question about SSRI/SNRI's though. I know that the SSRI is used for serotonin. My question is: What if your serotonin levels are fine? My dr. at the time, didn't test my serotonin levels (I really don't even know if they can). But why would any dr. just prescribe anything without really knowing if that is what you need or if your levels are fine. I guess they treat you based on what your symptoms are, but I've often wondered what happens if you take an SSRI to increase your serotonin if your levels might be fine. Is it ok to have more serotonin than you need. Am I making any sense at all?? I don't really know that much about all this, I just know that I didn't enjoy my experience the first time and I'd like to never have it again.

Again, Altruism, we just have to try to do what is best for us and what seems to be working at the time.

Hope things get better for you soon On the brighter side, I'm glad to see that at least you are on the road to finding solutions. Best of luck to you

[Joann]

Bebe,

As to your question as to why a doctor would prescribe a certain drug without knowing, well, I think that is very common. They "think" this might help and we are our own guinea pig. I think if they had to live with the side effects and bad reactions to a guess on medications they may try and find out more before prescribing.

But to be fair, I think doctors do that because testing is very expensive and some times invasive and they figure try it, if it works then that is probably what it is.

I have been prescribed clonodine for that reason. My doctor thinks it may work better for me than the medication I am on. I may have hyper pots and instead of testing she figures if it works, it works. I have not yet tried it, I am scared to go off what I am on, and to try a new drug. She doesn't do testing except for TTT, so I am going to Cleveland for tests and then I will decide about medicine.

I also had the same reaction to Celexa, I felt horrible, it actually made everything worse. I was sweating, heart pounding, high bp. Months later another doctor had me try Lexapro and I ended up the same way and back to the ER. My doctors and I have decided I should not try this type a medication again. But everyone is different, some people do wonderful on these medications. I had hoped they would work.

[bebe127]

Thanks Joann,

I guess you are right, but I honestly would rather pay for the testing, even out of my own pocket than to just have a pill pushed on me that might or might not work and might cause more problems than good. I too think that if the dr.s were the guinea pigs, they would think twice about prescribing certain meds. I guess that is just where most of us with this illness fall, we are guinea pigs, whether we like it or not

BTW, that particular dr. that prescribed the Celexa didn't even try anything else or suggest anything else. He was one of the many jerks that responded with, "You've got a mild case of POTS because you don't faint, maybe you should try a dr. closer to home and consider seeing a therapist." This response was from an EP that was supposedly a specialist in POTS!! UGH! Truth is, we have to be our on advocates and try to educate ourselves as much as possible.

The point is, we just have to keep trying!

[abbyw]

Hi,

The reason my doctor prescribed the SSRI/SNRI was because she knows nothing about POTS. I came in with my own diagnosis and treatment plan and she went along.

I chose to try that because in the literature I had read, Dr. Grubb had said that he had seen lots of success with it. I was scared to self-prescribe florinef and the side effect list didn't seem any more pleasant than the SSRI. Considering that the doctors I had seen had never heard of POTS and were saying I had anxiety, this was something they were willing to go along with.

Totally not scientific. I know. I was desperate.

As many have said before, starting was completely horrific. There is a great site, crazymeds.org, and I ended up following his recommendations of starting on a low dose and going up. Even with that, the tachy got worse, as did the dizziness, and the chills and shaking. I lived through the first two weeks on benzos. But then things started to calm down and I was taking a 1/2 a benzo every other night just to get to sleep. Then, more improvement. I would say 4 weeks until I was out of the horror show and another 2 until I was stable.

I did gain a ton of weight on the Lexapro, and the Effexor(SNRI) left me pretty jittery a lot of the time with horrible night sweats, without losing the weight. For me, so far, Prozac has been the best.

Again, I am not what I was pre-POTs, but I can do the grocery shopping without a pre-syncope or syncope episode. I can do housework with breaks in between. I can take my kids to the park. To me, that is worth a lot.

It still bothers me that I did not ever get an official diagnosis, and that I am not 100% back to myself. But overall, I am grateful that I am not where I was a year ago and that I am functioning.

Sorry for the long post -

Hope this helps someone,

Abby

[Guest Alex]

OK,

I won't post about my SSRI experience, as it has been quite nasty, but I wanted to address a couple of issues here. I've learned about this after I stopped taking the SSRI and maybe this will make those of you looking into this treatment option understand better how SSRI's work.

Please keep in mind I am a non medical person, so please take this with a much needed grain of salt .

SSRI = selective serotonine reuptake inhibitor

SNRI = serotonin-norepinephrine reuptake inhibitor

There is a blood test for the serotonin level, but to the best of my knowledge this test is ordered to rule out or to confirm the existence of a carcinoid tumor.

Back to the drugs though and to my understanding as to how they work.

SSRIs or SNRIs do not raise the level of serotonin in the brain - that would be dangerous, and you'd need a street drug like Ecstasy to accomplish that. These meds work by inhibiting the reuptake of serotonin already existing in the brain. The inhibition process is the one that slows down the reuptake process, and this, in turn results in a slightly higher buildup of serotonin in the brain. Serotonin is acting as a bridge between the receptors of the brain. these receptors rely on the presence of serotonin to fire properly. When the serotonin is prevented from being absorbed by the brain by using drugs like SSRIs or SNRIs, more of it is available to act as a bridge between the receptors in the brain.

In a nutshell, SSRIs and/or SNRIs do not increase the level of serotonin in the brain, they just make more of it available to the brain receptors.

My 2 cents.

Alex

[bebe127]

Thanks for clarifying that Alex!!

So many times, with me anyway (as a person who rarely went to the dr. before all this) I was taught from a small age to trust dr.s, after all, they have had all this training and schooling and they must know more that I do, although I am slowly realizing the reason "they" call it "practicing medicine". I just trust that they know more than I do and in turn, end up doing whatever they tell me to do. I have learned the hard way to research as much as I can, although, sadly, my research usually isn't done prior to taking the meds! Like I said, I just blindly trust the dr. that is prescribing and don't ask too many questions. Stupid on my part, I know. I learn as I go, and as a result of my experiences, I'd like to think I'm a bit smarter now about me and my body and my reactions. I just wish that dr.s wouldn't put us all in the same little box. After all, we are the only ones that know us. We live with the effects of this illness day in and day out, and no one, I mean, no one knows us better than ourselves. If something doesn't feel right, I truly believe that it isn't right and there must be an explanation. The real question is, can we find a doctor to help us in our journey back to a normal life? I don't know, but what I do know is that I will never give up. I might be helpless at times, but I am never hopeless! Everyone is different and we all require different protocols. I say, if it is not broke, don't fix it Conversely, if it is broke, find, by whatever means necessary, to fix it.

[abbyw]

Bebe - I think that the problem here is that we know that something is broke, but we don't know exactly what, hence we don't know how to fix it. As all of us here have, I have had quite a few unpleasant experiences with medical professionals, but I do believe that ultimately they want to help, even if they don't go about it in the right way.

Unfortunately, sometimes I think that the only way to know if a med will work for a particular patient is to try it. That is painful for us, but sometimes things get so bad that we are willing to try if it may help. I told myself that if it was that bad, I could always stop and I would not be worse off than before I started.

[ramakentesh]

Well said abby

[Anoj]

Anoj, how does an SSRI improve your dysautonomia? Lower HR? More ability to stand up? Fewer symptoms? Thank you.

It is really hard to articulate in words, but for me it just makes everything better. I'm not as shaky, not as fatigued, don't pool blood, not as dizzy ... just overall better and more normal. it really ***** that it caused so much weight gain for me, becs I would have stayed on it!

[Angela]

so do all ssri's cause weight gain? why is that? i know many who say florenisef causes weight gain too. just saying, i don't run marathons so dont want to have issues down the road from an ssri due to weight gain. i know you are supposed to "trial" and if you have to get off you have to wean off like benzos. i was put on a snri buspar before dx'd and had no probs weaning off.

[ramakentesh]

Florinef caused for me moon face, then water retention and then actual fat weight gain. So I started exercising (probably more than I should have as in 5km runs from scratch). I felt really good and on florinef I could run so much further than normal. I dropped the fat weigtht and some of the water retention.

[ramakentesh]

feel better on that SNRI?