Cymbalta/ssri For Pots

[s-pot]

Just wondering what peoples opinions are on SSRI for helping with POTS.Ive read various different peoples experiences with them (mostly positive) and would like to get an idea on what ye guys think the pros/cons of using this type of medication for pOTS are?

I saw consultant last week and he was recommending I go on this for treatment of POTS.

Just to fill you in slightly on why he recommended this....at age 15 (now 25) i became very unwell for a year, no one could find out what it was (when i thnk bak had alot of POTS symptoms, recurrent infections extreme fatigue) and instead of investigating further when the obvious didnt fit, it was decided that i had Generalized anxiety disorder/depressive disorder and was psychosymatic (none of which fitted my tendacies/personality at that time, i was just extremely weak and worn down by physical illness).

To cut a long story short I was put on SSRI with this psychiatric opinion and started to improve (which confused and upset me, the psychiatric labelling made me question everything I experienced or believed about myself and the improvement in my physical health confirmed their diagnosis!)

However over the following 8 years it was extremely difficult to get off the medication, anytime i tried I would feel horrendous physically and end up going back on the SSRI. i questioned this several times but was told I would need them for life! (which i couldnt accept at such a young age). In 2006 a psychiatrist attempted to take me off them, I developed seizures which i would have up to 15 times a day and other symptoms now i kno clearly were POTS symptoms. Once back on the SSRI this all subsided again.

2 years ago another new psychiatrist was v supportive in aiding me get off the meds...i had developed muscle spasms, twitching and some other symptoms. It was thought long term usage of SSRI was affecting me and psych said i had the most severe case of Serotonin withrawl syndrome he had ever seen. However i now believe that all the symptoms that were put down to Serotonin withdrawl was actually POTS and i believe i had it from the age of 15 but the SSRI treated it quite effectively. In the year since i have been completely off the drug my physical health drastically deteriorated, i have poor quality of life, v poor energy and have hadto take a year out of college. Its been very difficult to get my diagnosis but a TTT confirmed POTS back in march, with a 3 day holter monitor showning arrythmias and inappropriate sinus tachycardia.

I was started on Midodrine 15mg p/d which has shown a great improvement but nowher near where i need to be and the quality of life i had while on the Cymbalta.

I am so so so reluctant to starting back on SSRI as it was such **** to get off them but im wondering if it treated the underlying POTS so successfully for so long it might be my best option! Its certainly not a decision im taking lightly at the moment and althou they have been perscribed i havent started taking them again.

I would really appreciate anyones experience/opinins on this!!

Thanks

s-pot!!

[cmruls]

Cymbalta is a great med for dysautonomia but a terrible drug to get off of. Other options are amytriptline and coreg or bystolic. How is your sleep? To taper off cymbalta I got it in a liquid form and decreased by 1 mg every 2-3 weeks. Serotonin withdrawal is horrible, can even get symptoms for some time after you stop the med. I would not be afraid to go back on cymbalta but it frightens me to try and come off it.

[icesktr189]

Yes I am on lexapro right now for POTS. Just started taking it again two weeks ago. I am still trying to adjust to it, but it has already been helpful to some of my symptoms.

SSRIS can raise your blood pressure and lower your pulse rate. This is why they work with POTS. Also because of having dysautonomia, I had low seritonin levels to begin with.

I too thought I had anxiety/depression before my POTS diagnosis because I responded really well to Lexapro when I first crashed from POTS. I went from being completely bed bound to driving and working just from lexapro.

Problem with any drug is that it affects all people differently. Some on here do great with it and others dont. I love how it controls my adrenaline surges, which were a major problem for me. I am going to complement it with midodrine this time too.

They key to getting off any SSRI with no withdrawl symptoms is TIME. Taking only one month to taper off just simply is not enough, especially when you have been on them for years. I had ZERO side effects going off my ten mil. dose of lexapro because it took me a good 8 months to get off of. I SLOWLY started chipping away from my pill. I would cut a sliver off, and do that for a couple weeks. Very tiny amounts over time, and I did great. This whole thing of cutting a pill in half and then fourth every week will not work. I dont know where doctors got that idea. Your brain cannot process that withdrawl that fast.

[s-pot]

Thank you for your responses. I am reading great things about SSRIs/SNRIs wit pots and it seems to be quite effective for some people alright. I have gotten so unwell and alot of symptoms since coming off them a year ago and now with a definate diagnosis I think its clear that the Cymbalta was v effectively treating POTS for me for a long time!

I think i will too give it a go in combination with the Midodrine now.

When coming off them a year ago I had to literally open the capsule and take out 3mg of 30mg dose weekly and replace all the little beads bak in the capsule! it was a nightmare and took about 10-12weeks to get off them...ive just gone from bad to worse since!

Any advice re dosage? What dosage are ye taking? and would it be effective to just take one every 2nd/3rd evening? id like to try the minimum dosage possible to start and see the effect....if it dont respond with a good improvement in symptoms now i probably wudnt be happy to say on them for long!

[Noreen]

Just a fyi re: Cymbalta.

I was on 60 mg bid for several years. Last year my cardio was concerned about my cholesterol and I had to see a nurse every month for a while. Diet changes were not doing anything. I went off Cymbalta due to an insurance issue and 2 months later my cholesterol was under control without cholesterol meds. I have since heard that cymbalta is associated with elevating cholesterol.

[shoegal]

if the SSRI helps why get off of it? I'm confused

my GP wants me to go to a psychiatrist to get an SSRI, I took prozac years ago 100mg, gave me a ton of energy but couldn't sleep

[cmruls]

Start low and go slow. Go up as needed for effect, but not so high as to get side effects. Cymbalta 20-30mg/d for 2-4 weeks then 20mg bid then I was on 30 bid. 60 bid is a big dose. The idea is to use a dose lower than they would normally use for depression. Different doses have different effects.

[kclynn]

There are other meds besides Midodrine, too. If you are that affected with side effects, maybe there are other meds you can try.

[Christy_D]

My son takes cymbalta and midodrine. We reduced his dose of midodrine since he didn't like the effects of 10mg we reduced to 5mg and he now doesn't have any.

As for cymbalta, he started his full dose (120mg) on April 11th and it has had a very positive effect on him. For him nothing was happening until we got to the maximum dose. The same thing was true when he was on doxepin. Until he was on the maximum dose, he wasn't get that much of an effect from it. The doxepin only gave him relief for 7 weeks and then stopped. Hopefully, the cymbalta lasts longer. We are enjoying him being more functional now.

While he still has symptoms, they are much less severe and don't last as long throughout the day.

Christy

[s-pot]

if the SSRI helps why get off of it? I'm confused

my GP wants me to go to a psychiatrist to get an SSRI, I took prozac years ago 100mg, gave me a ton of energy but couldn't sleep

In my case I came off the SSRI 1 year ago but did not have a diagnosis of POTS, i have gotten gradually sicker and sicker since i came of it the SSRI and then POTS was diagnosed. In hindsight it is thought that everytime over the years i tried to get off it and became ill it was actually POTS rearing its head!

Hence why I think going back on it now may be the best thing for me, it treated my symptoms very well for a long time unbeknownst to me. I dont recall any problems sleeping when on them but had alot of different symptoms in the final year on Cymbalta. I will only know when i go back on it if this is down to the drug itself or just worsening POTS.

[Darlene]

I had some scary side effects while taking cymbalta. I have tried just about every SSRI. Lexapro helps with my symptoms, and have had no side effects except weight gain.

[icesktr189]

northerndarlene-

How many mg of lexapro do you take??

[green]

I would reserve anti-depressants as a last resort.

The brain fog and sympathetic overactivation of POTS earned me a misdiagnosis of "anxiety" and a script for lexapro many years ago. The drug was insidious - it made me feel uninhibited and then when I tried to quit my POTS was much worse.

I had a similar experience with a drug called EMSAM.

[icesktr189]

My cardilogist prescribes my lexapro. He knows that it helps treat pots. The key is to take a low dose. My pots patients dont even need the full theraputic dose. It gave me my life back last time and I hope it works the same again

[mynagirl]

Cymbalta worked amazingly well for me for two months. I was "cured"! Then it stopped working. And it was awful to come off of, I had chirping in my ears for months! Good luck with getting the right choice for you!

[Victoria]

I would not be afraid to go back on cymbalta but it frightens me to try and come off it.

Cymbalta was very good for my neuropathy/autonomic symptoms, but I shudder when I think about coming off it. It took 6 months. I had to take the capsule apart and count out the little timed release beads. I had very strange sensations; brain skips and brain zaps while I was going through withdrawal. My brain felt like a badly scratched 45 rpm record that kept skipping! I finally weaned off at 2 beads.

[Sarah4444]

I just wanted to agree with the advice to start with very low doses of any SSRI/SNRI meds. Before POTS diagnosis I had some very odd reactions to "normal" doses of Celexa and Cymbalta - Celexa seemed to make my pain worse for some reason, and while Cymbalta helped with the pain, my POTS got extremely and rapidly worse.

[s-pot]

Thanks all for your posts above and advice. As i tolerated Cymbalta for several years I tried this drug this week having been off it for a year. I was very hopeful it would give me a boost with symptoms energy etc in addition to the Midodrine but it was.....

A DISASTER!

Took the lowest dose 30mg for one night. I had a horrific night, extremely agitated,jittery, panicky, anxious (i have had none of these problems before taking it!) and a feeling like i wanted to 'get out of my skin' if that makes any sense.

It seemed to have sent my nervous system into overdrive, it took 24 hours for the effect to wear off and i was like someone who was on fastforward for the day!! Really horrible and im defo not going to take them longterm when my system reacted so strongly so quickly.....So back to good old Midodrine on its own, lotsa salt and water, n a script for positivity n hope things improve!!

[icesktr189]

What you just experienced is normal especially for pots. I felt the exactly the same way for the first two weeks on lexapro. Start out on a lower dose and take a benzo to help out. All those symptoms go away.

[janiedelite]

I've been taking Paxil for 7 weeks now, 25mg/day. I had the horrible adrenaline surges which are now decreasing in severity. I have had improvement in my reaction to stress. It doesn't seem to throw me into overdrive like it used to. It also lowered my BP (I have hyperadrenergic POTS) and I can take midodrine now. I wasn't able to in the past because it made my Raynaud's so much worse. However, I've also developed a rash from it so I'm still definitely in the process of trying to find the best medication regimen for me.

I was prescribed Paxil by my POTS specialist, who's a cardiologist.

[icesktr189]

I was just going to ask how you were doing thankful!

I too was given it by my cardiologist.

Everyday is getting easier and easier.

[s-pot]

Glad to hear that response is normal enough for POTS! Thanks for responses

So do you guys suggest persisting with these meds and it can get better??

Im terrified after that reaction and kinda ruled it out straight away!

Only problem is the lowest dose of Cymbalta i can get here is 30mg so that hasto be my start of dose

Tankful glad to hear your symptoms on Paxil are improving....thinking maybe i should try a different drug to Cymbalta.

What exact group is Lexapro and Paxil? SSRI/SSNRI?

[janiedelite]

Paxil is an SSRI but it is prescribed for anxiety disorders and has been shown to decrease the reuptake of norepinephrine. Honestly, I've never been able to really grasp the pharmacology of these drugs. I'm still hoping to get some real benefit from the paxil. I've heard it can take a few months. My cardio said that she might add a low dose of Effexor which is listed as an SNRI. Given that my norepi has been high on standing, I was hesitant to go this route but now I'm willing to give it a try after seeing how the paxil reduced my adrenaline issues.

I'm still having adrenaline issues that are worse than normal at night, but I can take a benadryl and that helps a lot.

What I really hope to address is my fatigue levels and brain fog. I'm still waiting for improvement in that area. Also, it would be nice to address my burning skin and muscle pain.

[icesktr189]

Thats the downside of these drugs is they take awhile to work.