SSRI/SNRIs... what symptoms specifically do they help for you? Need advice for symptoms after activity

[Hippopotsamus]

Hi folks, I am wondering which SSRI or SNRI you are taking and which specific symptoms they improve for you. My beta blocker controls my heart rate so I can stand up/work/cook, etc. I am functional but still very uncomfortable on a daily basis. I still really struggle with post-exertional fatigue (and after activity the excess adrenaline impacts my mood-anger/compulsiveness/inattention/irritability/dissociation/neurosis). I only feel this way after overdoing activity, particularly cleaning and to a lesser degree with the hormone shifts at certain points of my cycle. Any advice? Medication? More hydration? Yoga? Meditation? What helps you with this?? I don’t know whether to blame it on brain hypoperfusion, excess adrenaline, inflammation or serotonin deficiency but  I’m finally starting to accept that maybe I can’t fix this on my own out of sheer effort. There is an actual problem that medication could help to make it so I don’t have to fight so hard while continuing to crash and burn. I have a good support system and am a glass half full person in general so this direct effect that POTS seems to have on my behavior has been troubling me. 

[Pistol]

1 hour ago, Hippopotsamus said:

I don’t know whether to blame it on brain hypoperfusion, excess adrenaline, inflammation or serotonin deficiency but  I’m finally starting to accept that maybe I can’t fix this on my own out of sheer effort.

Oh @Hippopotsamus - I so know where you are coming from!!! I used to think the same way, that I can WILL my way out of my symptoms! That if I ignore/push/force myself to go on despite of my limitations I could go back to normal. And man - did I fight!!!! But then I had to stop denying the reality that this is not going away, that  this is real and I really AM having a chronic illness. That realization turned into depression, I felt like I had given up. And after that I slowly crawled out of it, decided that if I cannot beat this then I will have to accept it. So here I am, still disabled, still limited, still a dysautonomiac - yet so much better off! I now am at peace with it, and I can be gentle on myself, do what I can when I can and not feel sorry for myself. I am - to a degree - in control of things again. 

I believe the causes you mention above are all at play - they are all symptoms and causes of POTS. And the only treatment we can hope for - at this point - is symptom relief. I have been on the SSRI Escitalopram ( Lexapro ) for many years and it has greatly helped me. The high adrenaline levels ( I have hyperPOTS ) caused me to be really high strung and very nervous all of the time. I was always on high alert. This of course caused a lot of stress. The Lexapro has helped me to calm down and feel more balanced. I was afraid of taking it, I thought I might be sedated, or maybe my personality would change. But actually it did not do anything big - I simply noticed after about 6 or so weeks that I felt better, and more balanced. 

SSRI or SNRI are both proven to be effective for POTS symptoms. They help regulating the neurotransmitters that are the culprit for many of our symptoms. My specialist often uses an SNRI, especially Wellbutrin ( Bupropion ) instead - or even along with - an SSRI. I took it for a few weeks but had an adverse reaction ( acne ) from it and had to stop it, or else I would still be on it. If your doctor is open to prescribing an SSRI or SNRI I would try it. But know that it takes 6-8 weeks before you see any effects. 

1 hour ago, Hippopotsamus said:

Medication? More hydration? Yoga? Meditation? What helps you with this??

For me it is a combination of several things: I take a mix of meds: cardiac for tachycardia and high BP, stimulant for brain fog, SSRI for restlessness and mood, Plaquenil for inflammation ... and weekly IV fluids via port for prevention of syncope and seizures. I also salt/fluid load and exercise on my rowing machine when able. But what is just as effective is the fact that I am disabled and housebound and therefore do not have to do anything that could cause my symptoms to flare. If I could not live within my ever changing limits I would be very ill despite all of these treatments. 

So, in other words: for most of us getting control of this illness is not one single thing but rather a complete change of how we live and what we do every day, in addition to meds, exercise/rest, fluids etc. 

 

 

 

[Hippopotsamus]

@Pistol - thank you for your thoughtful response. I have been so hesitant to try something new out of fear that it could make things worse (what if I have a reaction and can’t take care of my kids or go to work) but then I consider my metoprolol and how much I put up a fight about restarting that but then, hey!-I can stand up for more than 2 minutes, I can manage to walk around the grocery store without my lights going dim and worrying about going down in the aisle, I can do laundry without pushing 140bpm. What if a medication could make it so I don’t feel like I’m plugged into an outlet constantly? Or help so I don’t feel flulike & hungover and angry from cleaning up the playroom? Ugh. I think I’m ready. 

[ramakentesh]

Lately my brain fog has been so bad amd combined with the pandemic ive developed kind of ocd symptoms and was contemplating a low dose SSRI just to calm down my stress levels and compulsions.

[Pistol]

@ramakentesh - a SSRI/SNRI is a good treatment possibility for those symptoms!

[ramakentesh]

Thanks

[CallieAndToby]

I have a lot of friends with very severe ME and dysautonomia and klonopin or Xanax seem to be the best at helping with PEM. I found out accidentally spending a year in bed and deciding one day just to take a little bit and it really helped. Whitney Dafoe is probably the sickest ME patient and once a month he takes a benzodiazepine and he's able to communicate b/c it clears up brain fog, they don't know why. 

[E pots]

On 3/28/2021 at 9:56 PM, Pistol said:

Oh @Hippopotsamus - I so know where you are coming from!!! I used to think the same way, that I can WILL my way out of my symptoms! That if I ignore/push/force myself to go on despite of my limitations I could go back to normal. And man - did I fight!!!! But then I had to stop denying the reality that this is not going away, that  this is real and I really AM having a chronic illness. That realization turned into depression, I felt like I had given up. And after that I slowly crawled out of it, decided that if I cannot beat this then I will have to accept it. So here I am, still disabled, still limited, still a dysautonomiac - yet so much better off! I now am at peace with it, and I can be gentle on myself, do what I can when I can and not feel sorry for myself. I am - to a degree - in control of things again. 

I believe the causes you mention above are all at play - they are all symptoms and causes of POTS. And the only treatment we can hope for - at this point - is symptom relief. I have been on the SSRI Escitalopram ( Lexapro ) for many years and it has greatly helped me. The high adrenaline levels ( I have hyperPOTS ) caused me to be really high strung and very nervous all of the time. I was always on high alert. This of course caused a lot of stress. The Lexapro has helped me to calm down and feel more balanced. I was afraid of taking it, I thought I might be sedated, or maybe my personality would change. But actually it did not do anything big - I simply noticed after about 6 or so weeks that I felt better, and more balanced. 

SSRI or SNRI are both proven to be effective for POTS symptoms. They help regulating the neurotransmitters that are the culprit for many of our symptoms. My specialist often uses an SNRI, especially Wellbutrin ( Bupropion ) instead - or even along with - an SSRI. I took it for a few weeks but had an adverse reaction ( acne ) from it and had to stop it, or else I would still be on it. If your doctor is open to prescribing an SSRI or SNRI I would try it. But know that it takes 6-8 weeks before you see any effects. 

For me it is a combination of several things: I take a mix of meds: cardiac for tachycardia and high BP, stimulant for brain fog, SSRI for restlessness and mood, Plaquenil for inflammation ... and weekly IV fluids via port for prevention of syncope and seizures. I also salt/fluid load and exercise on my rowing machine when able. But what is just as effective is the fact that I am disabled and housebound and therefore do not have to do anything that could cause my symptoms to flare. If I could not live within my ever changing limits I would be very ill despite all of these treatments. 

So, in other words: for most of us getting control of this illness is not one single thing but rather a complete change of how we live and what we do every day, in addition to meds, exercise/rest, fluids etc. 

 

 

 

Is Lexapro better than Prozac?  I was told SNRI' are not used with H Pots.  Confused.  

[Pistol]

@E pots - Lexapro is a SSRI

[E pots]

I know that Lexapro and Prozac are both ssris but I don't know which one would be better? Also have you heard that snris are not good for hyper-pots?  Have you tried Prozac?

[Pistol]

@E pots - I have not tried SNRI's. I have always been on Lexapro and always tolerated it very well. My autonomic specialist ordered it after he diagnosed me with HPOTS. I do know of Others that take Prozac who have done well. Which SSRI helps you is highly individual, as all meds used in treatment of POTS are - we may share a diagnosis but he underlyong causes are different, and therefore we respond to no ONE med the same. Here is an exerpt for this article: POTS Treatment: Scientifically & Medically Proven • MyHeart

"Selective Serotonin Uptake Inhibitors (SSRI’s)

SSRI’s are a class of drug typically used as antidepressants. The production of serotonin is thought to be faulty in some patients with fainting spells and there has been some experience to suggest it may be of use in some with neuro-circulatory passing out such as that seen in postural orthostatic tachycardia syndrome (Goldstein et al)."

[E pots]

Thank you.  Interesting.  I'm needing something to change here.  I have an appointment with the new nurse practitioner that I've never met before on Wednesday. I typically see a different one at the Cleveland Clinic but he is not available. I've been so sick the last couple months. Trying everything lots of bed rest exercise has quite a bit as I can I am drinking probably six liters a day ..probably more with 4 teaspoons of salt.  They put me on the Propranolol and took me off the fluro cortisone.  My blood pressure is now down.  Do you think I should ask to be put back on the Fludrocortisone so that I don't have to drink so much?  

[Pistol]

@E pots - keep in mind that most SSRI's take weeks to kick in, so I doubt that switching to a different one would bring about a big change. 

13 minutes ago, E pots said:

Do you think I should ask to be put back on the Fludrocortisone so that I don't have to drink so much?  

I am not sure, best to ask the NP. Personally I found that once I don't respond to a med my specialist changed me always to something else. We can only try and learn, since we are all different and the way to find the right med is by trial and error. The fact that you drink so much but pee it all out leads me to believe that you need more tha  simply fluid replacement. In my case it was the same - Whatever I drank came right back out. That's why my specialist ended up ordering IV fluids as needed to stop flares - the drinking was ineffective. It is important that you tell the NP that you are not improving despite the drinking these inhumane amounts of fluid. Maybe you can ask to have your RAAS checked ( Renin-angiotensin-aldosterone-system ). It is responsible for how much fluid you pee out and for releasing hormones that can increase your BP. This could affect your BP and HR etc. 

[E pots]

Good idea

[E pots]

I'm not on one currently.  I was on one a yr ago Prozac but lost alot of hair so stopped.  But I did ok off it till now.  I may have overdid exercise a couple months ago leading to this.  I wad stupid to do so much. 

[cmep37]

Hindsight is a wonderful thing - no point beating yourself up, just remember it next time you are tempted to overdo it!! 

[Elizaangelica]

I’ve been on an SNRI for years (Cymbalta) for depression, ocd and anxiety, and tried several SSRIs in the past. I’ve never felt them to have a positive or negative effect on my POTS, including Adrenalin. The only thing is that I’ve had issues over the years with quite a few psych meds causing very increased overall heart rate, to the point where they have to be discontinued to try something else. I seem to be especially sensitive to that specific side effect.

[cmep37]

 

On 6/8/2021 at 2:50 AM, Elizaangelica said:

with quite a few psych meds causing very increased overall heart rate

I couldn't take low dose (Elavil) for pain for exactly this reason @Elizaangelica - it raised my resting HR to low 90's which made my POTS awful - I was still experiencing the same 70-80 BPM increase when standing so my HR was hitting 160-170 all the time! 

[Chrissa]

I found the SSRIs make me worse. Like an increased HR.  I’m on an anti depressant but it’s not an SNRI, it’s in a class by itself. However mine causes weight gain and it makes me sleep which I wasn’t doing much of before. At the time I was put on it I desperately needed to gain weight. My anti depressant has anti histamine in it so it could have been helpful to MCAS which in turn helps the POTS.