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Has anyone taken SSRIs/SNRIs to reset their autonomic nervous system/improve their PoTS symptoms?


WBuffett

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Has anyone with PoTS ever taken SSRIs or SNRIs to help reset their autonomic nervous system/improve their PoTS symptoms? If yes, which one(s) did you take? Were there any side effects and what symptoms did it help fix?

My wife's doctor suggested Cymbalta, but there is not a lot of information out there on if it is of any benefit. She is hesitant to try it due to the horror stories of the side effects and withdrawal symptoms of taking SSRIs/SNRIs. 

Any feedback would be so appreciated as she is currently bedridden and is desperate for an improvement. Thanks!

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Hi,

I’m on Lyrica and Pristiq.  They help, but no cure.  In a rather interesting side note, one of our cats developed something called “Twitchy Cat Syndrome.”

it is an imbalance in the nervous system, similar to Dysautonomia.  Cats was caused by a shock to the system from steroids.

Our vet prescribed anxiety medication for the immediate issues, but also gave Stanley (cat), antidepressants to try and reset the nervous system.  
It worked, we slowly increased dose, then after a few months, we slowly weened him off.  
He is almost normal, still has spells of the Twitchy Cat, but very infrequent.

So, it appears to work in cats!   Good luck! 

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I’m so sorry about your wife. I know what it is like to be afraid of takings meds especially SSRI’s. I have tried Lexapro , hydroxizine , Effexor and Burspar. All had frightening side effects even at low doses.  I wish there were a med that would help me. I know many people that have been helped by taking SSRIs and SSNRIs. It’s just trial and error. I am newly diagnosed with POTS , before I thought it was anxiety. I took the meds because I thought I had anxiety. Now I take Midodrine and it seems to help me. 
I hope your wife finds a med that will help her with her symptoms. She is very fortunate to have a caring husband to be an advocate for her medical needs. 
 

I did find an old post with info on Cymbalta 

https://www.dinet.org/forums/topic/8942-cymbalta/

 

 

 

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@WBuffett - I have been on Lexapro for years with good effects on my POTS, no side effects. Earlier this year we added Wellbutrin ( SNRI ) and I did very good with it until I had an allergic reaction and had to stop. Personally I never shied away from taking meds for POTS b/c of listed side effects. Had I been too afraid I would not be better today. Of course I had some bad experiences but none of them were serious. My specialist recommends SSRI's and SNRI's for all of his POTS patients. I have found them to help with energy and fighting fatigue. 

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I've tried a wide variety of SSRIs and SNRIs as every GP I saw before I was diagnosed with POTS was convinced my problems were psychological and if we could hit on the right anti-depressant I'd be fine.  Finally I got a referral to a good clinical psychologist who said he didn't know what was wrong with me but I wasn't depressed or anxious and he believed my symptoms had a physical cause.  He said that if the anti-depressants weren't helping my symptoms I should stop taking them.  I've been on sertraline (Zoloft), escitalopram (Lexapro), fluoxetine (Prozac) and venlafaxine (Effexor).  I had no significant side effects with any of them nor any problems stopping them (I followed a taper schedule the psych gave me) so I'd definitely give them a go as I know some people benefit from them.

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My diagnosis isn’t POTS but rather neurally mediated hypotension. My Dysautonomia doctor prescribed Strattera, an SNRI, and it worked extremely well for me though I had to start with taking a third of a capsule every other day and it took about a month to increase to a capsule twice per day. It definitely did NOT reset my ANS though, as as soon as my dose wore off symptoms returned. I think this drug worked for me because I tested as parasympatheticly dominant.

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I took Zoloft before I was diagnosed as they thought I had anxiety.  It gave me really bad vertigo.  I am also one who is afraid to try any more meds because of the side effects.  I am however going to inquire about Lexapro as I have read a lot of positive things about that one.  

I also just want to thank you for advocating for your wife and reaching out to find support and help for her.  This disease is so horrible to live with and a lot of us spend too much energy trying to be heard/understood/believed.  She is very lucky to have you in her corner and I have faith that the two of you will find something to help!  Keep going, don't ever give up.

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On 8/2/2020 at 11:52 AM, WBuffett said:

Has anyone with PoTS ever taken SSRIs or SNRIs to help reset their autonomic nervous system/improve their PoTS symptoms? If yes, which one(s) did you take? Were there any side effects and what symptoms did it help fix?

My wife's doctor suggested Cymbalta, but there is not a lot of information out there on if it is of any benefit. She is hesitant to try it due to the horror stories of the side effects and withdrawal symptoms of taking SSRIs/SNRIs. 

Any feedback would be so appreciated as she is currently bedridden and is desperate for an improvement. Thanks!

I took Paxil for many years and it had the best results with few side effects.  Some people have a terrible reaction to SSRIs. Others like me do well, so it is a bit of trial and error.  You may have to try more than one kind and adjustthe dose.  It might be helpful to do some searches on the forum and also some reading on the different SSRIs that are used.  Paxil is one of them that has been studied and shown to improve dysautonomia symptoms.
 

I don’t  believe SSRIs reset the nervous system.  They increase serotonin which helps symptoms. 

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  • 9 months later...
17 hours ago, E pots said:

Prozac / fluoxetine caused a lot of hair loss  but I think it did help

Are you sure it was the Prozac?  I know that I experience a lot of hair loss just from POTS - I saw a trichologist and he believes that the lack of blood flow to my scalp when upright causes me to lose hair - I know that a couple of weeks after a flare my hair falls out in handfuls.   Luckily it grows back again and it is an all over sort of hair loss rather than in one particular spot so isn't too obvious.

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I have bad OCD and pain so I've tried every single SSRI and SNRI. I will say that I took Cymbalta for years and it didn't do anything for me personally. I ended up weaning myself off of it and there was no change. Sorry I don't have better news but coming off of SSRI's and SNRI's is not difficult compared to when I came off of atypical antipsychotic zyprexa or try-cyclics. Cymbalta does help some people with pain. 

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I am hyperandrenergic and before my diagnosis I was on Cymbalta briefly for radiculopathy. I had a rather severe reaction with all of the hyperandrenergic symptoms (tachycardia, hypertension, sweating etc). Cymbalta was not a good med for me with my over abundance of norepinephrine but I know others who have had better luck with it. I take and tolerate Wellbutrin with no side effects. Best of luck to you finding the right fit. 

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@CJ65 - I too had very good results from Wellbutrin! My autonomic specialist ordered it on top of Lexapro, due to my problems with fatigue. It really helped, but unfortunately I had to stop it after 3 months b/c it gave me very bad acne ( an adverse effect ). 

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On 5/24/2021 at 7:11 AM, cmep37 said:

Are you sure it was the Prozac?  I know that I experience a lot of hair loss just from POTS - I saw a trichologist and he believes that the lack of blood flow to my scalp when upright causes me to lose hair - I know that a couple of weeks after a flare my hair falls out in handfuls.   Luckily it grows back again and it is an all over sort of hair loss rather than in one particular spot so isn't too obvious.

So I took Prozac for a few months. Hair came out but growing back.  Started back on Prozac a yr later just to see if it helped snd shortly after noticed hair coming out again.  Stopped Prozac and it stopped.  The 2nd time trying it I was not in bad flare.   I am in a horrible worst ever 2 month long so far flare. No Prozac thus time.  We will see if hair comes out again.  I think it helped me (the prozac) not care as much about things that cause stress.  I would seriously notice not caring about things.  It says that few people get hair loss but I think doctors don't take the time to report it because my doctor didn't seem to care and its extra effort for them and its not life threatening....but I liked having hair 

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On 5/24/2021 at 7:11 AM, cmep37 said:

Are you sure it was the Prozac?  I know that I experience a lot of hair loss just from POTS - I saw a trichologist and he believes that the lack of blood flow to my scalp when upright causes me to lose hair - I know that a couple of weeks after a flare my hair falls out in handfuls.   Luckily it grows back again and it is an all over sort of hair loss rather than in one particular spot so isn't too obvious.

 

On 8/2/2020 at 11:52 AM, WBuffett said:

Has anyone with PoTS ever taken SSRIs or SNRIs to help reset their autonomic nervous system/improve their PoTS symptoms? If yes, which one(s) did you take? Were there any side effects and what symptoms did it help fix?

My wife's doctor suggested Cymbalta, but there is not a lot of information out there on if it is of any benefit. She is hesitant to try it due to the horror stories of the side effects and withdrawal symptoms of taking SSRIs/SNRIs. 

Any feedback would be so appreciated as she is currently bedridden and is desperate for an improvement. Thanks!

Both times I stopped Prozac I had no problems 

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On 5/30/2021 at 12:50 AM, E pots said:

So I took Prozac for a few months. Hair came out but growing back.  Started back on Prozac a yr later just to see if it helped snd shortly after noticed hair coming out again.  Stopped Prozac and it stopped.  The 2nd time trying it I was not in bad flare.   I am in a horrible worst ever 2 month long so far flare. No Prozac thus time.  We will see if hair comes out again.  I think it helped me (the prozac) not care as much about things that cause stress.  I would seriously notice not caring about things.  It says that few people get hair loss but I think doctors don't take the time to report it because my doctor didn't seem to care and its extra effort for them and its not life threatening....but I liked having hair 

Sounds like it probably was the Prozac!  I just know that in the past I've thought a POTS symptom was a side effect from a drug only to find it comes back in a flare long after I've stopped the drug.  Since you said the Prozac was helping you I wanted to make sure that wasn't the case in your situation!  Have you tried a SSRI/SNRI other than Prozac? - I think in the UK they recommend Effexor (venlafaxine) for POTS (personally I tried it and found no benefit) but I did a quick search and found no reports of hair loss with it.  It's an SNRI rather than an SSRI - SNRIs increase norepinephrine as well as serotonin so are often used to treat anxiety as norepinephrine is involved in the stress response.  Cymbalta is also an SNRI so might be worth thinking about.

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6 hours ago, cmep37 said:

Sounds like it probably was the Prozac!  I just know that in the past I've thought a POTS symptom was a side effect from a drug only to find it comes back in a flare long after I've stopped the drug.  Since you said the Prozac was helping you I wanted to make sure that wasn't the case in your situation!  Have you tried a SSRI/SNRI other than Prozac? - I think in the UK they recommend Effexor (venlafaxine) for POTS (personally I tried it and found no benefit) but I did a quick search and found no reports of hair loss with it.  It's an SNRI rather than an SSRI - SNRIs increase norepinephrine as well as serotonin so are often used to treat anxiety as norepinephrine is involved in the stress response.  Cymbalta is also an SNRI so might be worth thinking about.

I have heard SNRI's can make H pots worse.  Any other suggestion?  Thank you

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On 8/2/2020 at 2:38 PM, Pistol said:

@WBuffett - I have been on Lexapro for years with good effects on my POTS, no side effects. Earlier this year we added Wellbutrin ( SNRI ) and I did very good with it until I had an allergic reaction and had to stop. Personally I never shied away from taking meds for POTS b/c of listed side effects. Had I been too afraid I would not be better today. Of course I had some bad experiences but none of them were serious. My specialist recommends SSRI's and SNRI's for all of his POTS patients. I have found them to help with energy and fighting fatigue. 

Did you find ssris or snris better?

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8 hours ago, E pots said:

Did you find ssris or snris better?

I ever only tried Lexapro and Wellbutrin, but I found them to be equally effective for me. And I took the Wellbutrin on top of Lexapro. 

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@toomanyproblems - I ask myself this all the time. I was afraid of starting Wellbutrin b/c I have high NE levels. But it actually helped me - I don;t get it! I did not have any surges from it - which is what I had feared. Go figure!

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I’ve been on Cymbalta for about 3 years and have never had any side effects. It’s been the only antidepressant that helped my OCD and somewhat my depression. I’ve been trialled on many antidepressant meds over the years, with a variety of side effects, but nothing particularly dramatic regarding my POTS (though the POTS wasn’t as extreme back then anyway). Since my POTS became dramatically worse last year I’ve still been able to tolerate the Cymbalta fine, and I’m on a very high dose. It doesn’t seem to have affected the POTS either way. 

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