Ssris To Regulate Autonomic System?

[clairc]

Hi!

I've just come back from a visit to the POTS clinic and the nurse told me that SSRIs are the only things that will regulate the autonomic nervous system.

I'm not on any medication for POTS at the moment but my symptoms are severely affecting my life. I do not faint but I do get weak, breathless and dizzy when I stand, blood pools in my feet and legs and I have trouble maintaining my body temperature. I can't exercise, I can't walk more than about 50 yards on a good day with the aid of a walking stick, I can't get out of bed on a bad day.

She said SSRIs will help with my symptoms but I have had bad reactions and severe withdrawal symptoms from medication that changes serotonin. My POTS is probably secondary to Ehlers Danlos Syndrome, I also have autoimmune issues too.

Have people found SSRIs helpful? Or are there better medications to try?

I'm waiting to see if the consultant will prescribe fludrocortisone but I've been asked to keep a record of my blood pressure and pulse readings for a week because my TTT were negative and my symptoms don't seem that severe on paper.

[MomtoGiuliana]

A low dose SSRI (Prozac in my case--prescribed b/c I was breastfeeding--otherwise maybe not the best choice for POTS) really helped me. From what I understand SSRIs are quite helpful for about 50% of POTS patients.

I had the same symptoms you did prior to starting the SSRI. 8 months later I was well enough to go back to work.

I did have a very difficult adjustment period initially with worsening symptoms. An early side effect can be autonomic dysfunction--just what we need! I did not have any difficulty weaning off Prozac (which I believe is a benefit of it over some other SSRIs).

[clairc]

I was given Prozac many years ago when I was misdiagnosed with ME/CFS. It basically made me manic. I was either laughing or crying all the time. I am a highly motivated person already but it pushed me to be physically active beyond my capabilities which made my joint pain and fatigue flare up so badly I crashed, got very depressed and didn't want to live any more. I went back to my normal self after I stopped taking it. I have not had any mental health issues since so I presume it was caused by the drug.

My extreme reaction means I don't want to take a drug of that class again but my POTS nurse says it's the ONLY thing that will regulate the autonomic nervous system. I feel a bit stuck. I can't risk the mania and depression again because I have three children to care for but my POTs is causing me severe problems in my daily life.

I'm stuck in a catch 22 situation, if I take the drugs I get sick one way, if I don't I get sick another way. I wondered if there any other options, treatments or medications I could try? Or are SSRI the only treatment?

[seattle chris]

I started getting much better weeks after starting an SSRI (Paxil). I have even stopped taking Mididrone and Florinef without any issues. My quality of life has greatly improved over the last couple of months (although I still have some symptoms). I don't want to proclaim victory yet but I am hopefully optimistic that I will remain stable. I think the effects of each medication deviate materially from person to person and I have heard many state that they weren't helped by SSRIs. I also had fairly unpleasant symptoms the first few weeks of taking the medication.

[Guest Hanice]

I have seen people on this site say countless times that SSRI is a miracle, but they all (or almost all?) also say that it has its bad side effects in the beginning. I would like to know what are the side effects? Because I also don't take any medication, but if I was to take any, it would probably be that one.

The only way to know if it's good for you, is by trying it unfortunately. Everyone apparently reacts differently to everything. I also hate meds.

Keep us posted!

[Anoj]

i sure wish SSRIs didn't make me gain weight, because they help my POTS tremendously. i'm on a very low dose of zoloft (not theraputic). tapered down from 50 becs of weight gain. i've been in a holding pattern, but considering switching to prozac becs i have heard it was more weight-neutral. i would love to be able to take an SSRI without side effects, because they really help my dysautonomia.

[looneymom]

My son takes the Zoloft. It really has helped him to stay focused and it does help with his mood. However, when he started this medication, he was put on a very low dosage. His doctors and I have learned that with any medication, it's best to start low and move up slowly. You might try a different SSRI and see if it has the same effect. Has anyone checked hormone levels? If one is too high or too low, some medications work better. Zoloft helps your body keep what little serotonin your body is making. My son has low serotonin and he also has to have this medication about 3 hours before he goes to bed.

About 3 weeks ago the doctor suggested that I split the dosage to see if it would help him more. I gave him 50 mg in the morning and 50 mg in the evening. However, my son stopped sleeping through the night. Evidently this medication helps with sleep. I have also had to drop the extended release clonidine back to 2mg at night. My son is sleeping through the night and has been since September the first. So Zoloft and the extended release clonidine are helping with the sleep problem. The doctors and I have decided not to mess with his Zoloft or extended release clonidine anymore.

I have heard that getting started on the right SSRI can be scary. I would suggest getting some testing done if possible. I'm glad that our doctor did this testing and this testing is repeated about every 6 months.

Rachel

[Christy_D]

My son takes Doxepin, which is a tricylic(sp?) Antidepressant. It has been very helpful. I think we got lucky when his first POTS doctor prescribed it because it also treats MCAS which we discovered 4 years later he also has. It is also prescribed to help people sleep and people with restless leg syndrome, which my son also has. So this med treats many of his issues.

My daughter had a negative TTT but was prescribed fludrocortisone for the dizziness and it has been helpful.

Christy

[lfreem02]

I have been taking Lexapro for a year, and it has helped. I am also taking Atenolol, and Klonopin, so I am not sure how much it has helped on its own. I would be prepared for possible weight gain. I have never had issues with weight gain before. I went from 128lbs to 152lbs over the past year. I eat a plant based whole foods diet, and exercise, but I continue to gain weight. I also have issues with extreme abdominal bloating, which I think has played a part in lower back issues I have had over the past week. I tried taking Wellbutrin to offset the weight gain and fatigue, but it only took off a few pounds, and didn't help my bloating or fatigue. I am working with a chiropractor to address my Dysautonomia in a natural way, and also deal with the medication side effects. Dysautonomia appears to be a primary issue, because nothing else has been found to be causing it. So, we are looking at building up my adrenal function, reduce inflammation, and address compression in my spine. I am hoping to see big changes over the next few months.

There is a lot of information online about the side effects of the different SSRIs and SSRNs.

[Jon6945]

I think its quite possible SSRI's caused my dysautonomia, neuromuscular, and autoimmune problems, so I would be careful with those. I do respect that they can work for some people but I strongly believe most medical problems are related to damage from using drugs, particulalry physchatirc drugs so please tread cautiously. Even worse than SSRI's is benzos. I highly discourage these as there is no question they cause autoimmune problems and dysautonomia among a billion other problems. Under no circumstance do I recommend taking a benzo on a daily basis.

[Guest Hanice]

I think its quite possible SSRI's caused my dysautonomia, neuromuscular, and autoimmune problems, so I would be careful with those. I do respect that they can work for some people but I strongly believe most medical problems are related to damage from using drugs, particulalry physchatirc drugs so please tread cautiously. Even worse than SSRI's is benzos. I highly discourage these as there is no question they cause autoimmune problems and dysautonomia among a billion other problems. Under no circumstance do I recommend taking a benzo on a daily basis.

Wow! That's creepy and I believe it. In the possible side effects of the ssri it says it can cause autonomic nervous system problems if I recall correctly.. I am deathly scared of any meds. Especially with ones with such scary side effects.

[clairc]

I don't know if SSRI's can cause dysautonomia but I do know that Prozac does not agree with me, which is why I started the thread. My POTS nurse said they are the ONLY class of drug to help balance the autonomic nervous system but my experience of any drug that alters serotonin levels has been negative which is why I am very reluctant to try them

I went from being a balanced teenager to being manic and suicidal on Prozac, which is not something I want to repeat. I also had a terrible time coming off Tramadol, which acts like a SSRI. I've been through Tramadol withdrawal three times and I would not wish that on my worst enemy. I have three young children and I cannot risk taking either of those drugs again.

I'm glad that SSRIs work for some people but I'd like to know if there are any other treatments that could lessen my symptoms. I have a hard time controlling my pulse, blood pressure and body temperature. If my body gets cold I get a fever yet I can be shivering under a blanket when everyone else is too hot. If I stand my systolic falls and my diastolic rises, my pulse increases and I get dizzy and short of breath. I am unable to exercise, I am very disabled and any exertion makes my symptoms 10 times worse. I am seriously struggling to cope with looking after myself at the moment but the only option is drugs that I know will make me ill.

[Guest Alex]

I have only tried SSRI's briefly (one week of citalopram) and my POTS got so much worse on it. My HR and BP were all over the place despite spending most of that week in bed. I also remember dealing with a constant chest pain and a monster headache. During that same week I was unable to sleep or eat, and I had no control over my emotions or temper. Things got back to "normal" 2-3 days after I discontinued the pills.

Like you clairc i had bad experiences with several drugs than can alter the serotonin levels (tramadol was one of them) so some of the drs I've seen have suggested that I should stay away from them.

Have you ever looked into mestinon as a different category of meds that can help your POTS?

Alex

[gofl1]

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.

[MomtoGiuliana]

Autonomic dysfunction can be a side effect of SSRIs from what I understand. I think typically this must be a side effect in the adjustment period b/c otherwise it would not likely help improve POTS symptoms. Most side effects of SSRI's subside after several weeks. I know for me, it initially made my POTS symptoms worse, and then over time (weeks) I began to feel better. It does seem that people have very individual responses to SSRIs. They are not effective/helpful for everyone.

[cberau]

I have definitely heard of it helping people, but not me so far. I've tried wellbutrin, zoloft, effexor, lexapro, and mirtazapine and never really got a net benefit from any of them.

[lynnie22]

I just wanted to say, clarec, that prozac in a high dose just caused mania in a couple of people I know. I think that prozac has much more of a 'kick' than the others and that other SSRIs are less likely to do that, but you have to start and maybe stay small. I was just prescribed celexa, have had mixed feelings about taking it, but believe that taking a small dose may help. I agree about the benzos! when I was at Mayo three years ago, the sleep clinic people believed that benzos which I take and am trying to stop, not easy could be responsible for part of my dysautonomia.

[clairc]

It's not just Prozac. I've had problems on tramadol which I believe affects serotonin and works in a similar way to SSRIs. It made me very spaced out but also quite aggressive at times and it stopped me from sleeping (which is something that the Prozac did too) The tramadol withdrawal was unbearable too so I'm very reluctant to take anything that affects serotonin, even if small doses. I should have guessed it wasn't a good drug for me the first time I took it and had a terrible hangover when it wore off.

I wonder if there are any identifiers that would predict if SSRIs would be helpful or not without actually taking them. Do they work better on certain kinds of POTS? Or is it just down to individual cases?