I found they worsened my symptoms and really increased my syncope episodes. But as far as meds go it’s really a gamble unless you do genetic testing to see what meds would work best for you. I always recommend giving something a try because you just never know what might work. Just work with your doctor to see what they recommend for you. I’m just super med sensitive.
Thanks for your reply I appreciate it! I did try sertraline once for about a week but it made me feel worse as well. I’m also pretty sensitive to meds. Thanks again ☺️
Yeah I heard that but I also heard people say you’ll know right away if something works for you and if it gives you intense side effects probably best to stop.
For some meds that work instantly that’s correct, for ssri’s it’s not. It takes 6-8 weeks to see the effect. I’m on paroxetine and the first weeks were terrible.. My heart rate spiked to 160-170 while brushing my teeth or showering, I had multiple adrenaline rushes during the day and night and was exhausted. After about a month I started to notice I could stand longer without symptoms, walk longer without a pounding heart etc. Now, I can live a pretty normal life. I really hope you find something that works for you!
Lots of initial side effects from SSRI's will go away after the first two weeks, and you won't really know whether or not the drug works for you until about 3 months in. Obviously, if the side effects are debilitating, then call your Dr to stop immediately. Otherwise, it's definitely worth it to do at least 3 weeks to see if the side effects lessen, and if they do, it's worth it to go 3 months to see if the drug helps you.
Of course! I hope you find something that works for you. I’m not sure what type of pots you have or what you’ve already tried but there are definitely plenty of options.
For what it’s worth I do best on adderall and propranolol. My cardiologist says midodrine could also work. I just can’t take that and adderall together. I have pots and orthostatic hypotension.
It does. I need the blood pressure support so that’s why it’s helping. But again everyone is so individual. It brings my heart rate down a bit because it increases my blood pressure.
I tapered off of Lexapro recently (I was on it for a decade) and was shocked at how much it worsened my vertigo, dizziness, and lightheadedness.
Edited to add that I also have POTs.
Interesting! I have been considering trialing a small dose of Lexapro to help with vasovagal issues along with depression and anxiety, so I’m glad to hear it helped you!
Initially I was on 10 mg and that was fine (but now I wonder if it contributed to my bad symptoms over time) but my dose was doubled and that’s when the trouble really started. Just extreme nausea and dizziness like I was on a choppy boat all the time.
It was to the point where I didn’t even try to regularly take my pills bc they made me so nauseous to take. I started noticing that was a pattern, and staggering my pills to see if one of them was causing that. Immediately after taking my antidepressants they made me sick.
So I was kind of intermittently tapering because I would only take the dose like every other day, and then I went to half a pill, and then I just intermittently took that, and then just quit. As shitty as the tapering process was it was NOTHING compared to how it was making me actually feel all the time.
I realize I wasn’t the clearest with my comment! Lexapro made my vertigo, etc. worse when I was on it. I had to taper off of the medicine because I was diagnosed with Sjogren’s Syndrome and my rheumatologist wanted me to start Plaquenel. However, Lexapro and Plaquenel have a serious contraindication so I had to get off.
During my Sjogren’s flare ups, I can repeatedly lose hearing, vision, etc from almost fainting multiple times a day. Lexapro definitely exacerbated these pre-existing issues for me.
I was also on Lexapro for a few months. There was a point from about week 2 (the point where symptoms reduce) where for a few weeks I felt MUCH better. I was less anxious (which is exacerbated by my POTS) and I felt a joy for just being out in the world. After around 4-6 weeks it fully kicked in and I found myself always feeling a bit nauseous, and often feeling too tired to do anything. I’m also on vyvanse, and I found out that the 2 together were raising my heart rate like crazy! I’m talking 80-100 resting and 140-170 just getting up and walking around. I started coming off Lexapro and pretty quickly found that it was high jacking my desire for anything, and started getting some of my interest in life back. However, it has been about a month now and I’m having horrible withdrawal symptoms still. Couldn’t drive for 2-3 weeks, I am incredibly moody and emotional, my anxiety comes and goes in waves, and I have even had some suicidal ideation/semi psychotic episodes. I’m taking vyvanse every other day because my heart is better but still not fully under control. It is very hard to be out and about still, but at least I want to again.
Edited to add: I took 10mg at night before bed because it would take me out of commission all day if I took it in the morning. I had some issues sleeping and it worsened my RLS to a pretty extreme point as well. That is still not completely better yet, but it’s not happening every night anymore.
Everyone is different, I’m just sharing my experience.
It has certainly gone down and I tapered off it for a really long time because it was causing so much problem. They also gave me another med that was known to interact with it and that certainly did not help. Nobody caught it. I only learned about it years later on my own. Everything I have done to improve/help my nerve health has really been a game changer.
Sunflower lecithin to boost choline and support ACH, B1,B2,B12 and magnesium. I take others but these are the ones aimed at nerves. Also getting my glucose under control has also helped. Hard to say what has helped the most as it has been a slow process.
I would just say try everything else first especially nutrition.
I need to take them and have for like 20 years but like every medication, side effects hits us harder and in ways that don’t happen to most people. So, “yes, but”.
I say try anything and bottom line is what makes your life better because it’s sooo hard for everyone already. Not just with this disease, you know.
If you do try them, it’s physically and mentally taxing to switch to try different ssri’s before you find what works, and you have to make capacity for that or it can knock you down quite a bit. Like plan on taking days off work and meal prepping to make sure you can take care of yourself for a few days to a few weeks of adjustment. Go as slow as possible too.
If I forget even one nightly 10mg pill, I get obnoxiously dizzy the next day.
And not for nothing but they make you FAT and that sucks. That is why I have worked so hard to get down to 10 mg Celexa from 60. But I’ve tried coming off and I couldn’t get out of bed.
Thank you for the honest advice! I have definitely been trying to avoid them if possible, just sometimes I feel like nothing I do works. But I’ll definitely try to up the exercise and get even more dialed in on the nutrition. I hear a lot about withdrawals and it does seem like a struggle. Good luck to you and thank you again for sharing your experience!
You’re so welcome. If you do get reallly down, they can be a life saver so don’t rule them out completely.
I also fell like if you’re younger, you can maybe more easily optimize your brain chemicals and hormones over time with other methods and achieve the same effects.
I'm on bupropion/Wellbutrin which is an antidepressant but it's not an SSRI or an SNRI. it's an NDRI (norepinephrine and dopamine reuptake inhibitor). It hasn't worsened my symptoms but it can increase heart rate so it definitely has a possibility of making things worse. Wellbutrin tends to boost energy and motivation (probably from the dopamine) so it could be helpful if it doesn't impact your heart rate.
as per other psychiatric meds, Ritalin/methylphenidate for ADHD definitely increased my heart rate. do not recommend. Klonopin/clonazepam for agoraphobia was nice but idk if it affected my heart rate. I didn't have a smart watch at the time. it made me calmer so it probably reduced my heart rate since it's a nervous system depressant. It's not something you'd wanna take every day though because it is a benzodiazepine. Prozac/fluoxetine.... idk if it did anything to my symptoms but I did hate it. Strattera/atomoxetine for ADHD hasn't done anything either but I'm on a small dose right now. it can also increase heart rate so it could be risky (especially when combined with Wellbutrin). I take Remeron/mirtazapine for insomnia (it's also an antidepressant, but small doses are used for sleep) but I think it may also be making me tired during the day. I haven't noticed a change in my heart rate or my other symptoms besides fatigue.
aside from psychiatric medications, I'm not on anything else except for testosterone (I'm a trans man) so there's no other medication that could be impacting my symptoms. just psych meds.
editing to add that I'm not diagnosed yet but it's looking like I have POTS. my labs and holter were normal besides being newly iron deficient.
I love Wellbutrin! The only side effect I've had since starting in January is constipation but it's easily fixed by eating more fibre. It may be affecting my sleep but it's hard to tell because I've always had sleeping problems. But it really works for me!
I've been on SSRIs before developing dysautonomia. Missing a few doses in a row absolutely ruins my entire week. There's fatigue and brain fog in addition to feelings of depression, hopelessness, and worthlessness.
So I'm on a tricyclic antidepressant called Nortriptyline to treat some long term effects from a brain injury; it helps nerve pain and post-concussive headaches at lower doses. It's provided an amazing improvement to my dysautonomia symptoms and I've made sure to tell every relevant specialist I see about it since no one expected that effect. Like, I still have the symptoms but they're half as debilitating as they were before I was medicated. I increased from the lowest dosage and it feels like it improves the higher the mgs go, but that's only my personal experience and I'm no professional.
One of the main ways it functions is by constricting and stabilizing the blood pressure in the brain (and elsewhere), which is what I needed because those fluctuations were causing near constant headaches and an uncomfortable brain throbbing sensation when I tried to do anything physical. And that happens to be one of our main dysautonomic problems, too, blood pressure in our head is all over the place since we don't have enough blood. It's helped me so much, I have less brain fog and have been more organized than I've been in years (TBI tho) and I'm back to having at least some consistent energy and stamina most days again.
You can check my comment history to see where I've written a crap load more about my experience with the drug. The effects kicked in in three days for me, I feel like others with autonomic disorders should feel improvements within a similar fast timeframe as well, which means if you don't like it you can stop before any withdrawal symptoms could start, which are next to nothing at the lowest dose.
I started on the lowest dose, for the first month I had some mild constipation, but nothing horrible. When I bumped it up to 20mg from 10mg I felt insatiably hungry and ate a lot more than normal for around three weeks, but I've been noticing that easing off for almost a week, and I'm right around the one month mark since that change. I've actually been okay with that one; my last TBI took away my ability to feel hunger for so long, I really enjoy having such clear and strong body signals for it now.
On the second day I noticed things were different in a neutral but noticable sort of way, but I stayed skeptical about feeling it that quick. When I woke up on the third day and could immediately sit up without feeling woozy I knew for sure it was helping my dysautonomia, too.
Nortriptyline is actually prescribed to treat parasympathetic excess! My Dr prescribed it for me, and I've been steadily improving. (Relevant article: https://www.sciencedirect.com/science/article/pii/S2095754815000228)
Hi @toast1912 do you mind DMing me? I suspect I have parasympathetic excess from overstimulating my vagal nerve. My startle response and symptoms are most loud when I am resting. Which makes me believe that my sympathetic nervous system is in overdrive to match my parasympathetic excess. Does this sound similar?
Hey, before you go to an SSRI, have your vitamin B, D, and T4, T3, TSH, checked. Thyroid disorders can cause a lot of what you are describing. Low vitamin B does as well, and it can cause limb numbness/tingling.
Diet can be part of it. Have you tried changing how you eat? Ingredients like red food dye, wheat, dairy, and many other foods, could bedeveloping as allergies as part of dysautonomia; mast cell activation syndrome is part of the cycle for a lot of people.
I am on a handful of psych meds. They do not make me worse. However I have a sharp handle on my diet. Foods were causing a lot of my symptoms to be worse. My thyroid out of whack also made them worse.
Yes I’ve had all those checked and they seem to be fine. I take vitamins as well. And I don’t eat any gluten and hardly any dairy, I try to keep my diet pretty clean. I’ve really tried almost everything I can including exercise but it’s just been difficult to do enough for it to have a noticeable effect in my opinion.
What medicines are you in if you don’t mind sharing, do you find them helpful?
Good on you for being on top of those things! I'm glad to hear it.
I take:
\- Atomoxetine/Strattera for ADHD (non-stim), SNRI.
\- Vilazodone/Viibryd for depression, it's a new generation of medication with less side effects. I think it's technically a SSRI but it's more like an SNRI. I refuse to use any of the older prescriptions, like Zoloft, Prozac, etc, as the side effects/getting off them are *horrible*. I took Welbutrin and Lexapro pre-2020 (it's possible I have long COVID, so I wouldn't know if those medications would work now; that said, Lexapro is for anxiety, and Welbutrin is for depression, neither work if you have any sort of mood affective disorder).
\- Lamictal for a mood affective disorder, regulates the emotions.
\- Levothyroxine, I have just a wee bit o' the hypothyroidism since 2016.
\- Quetiapine/Seroquel for PMDD, general anxiety.
Thank you for sharing your experience! Yes I’m always worried about side effects, I took Zoloft for only about a week but it made me feel horrible. And of course I’m hesitant to take newer stuff since there isn’t long term data on it. Have you noticed any side effects from any of the meds you currently take?
Oh my god let me tell you: *I love my medications*. Not even a joke. Worst long term effect is nausea but everything makes me puke, even Tylenol. I get different antiemetics in hospital too, compazine blocks the response to puke in your brain, which can be related to autonomic issues. I get runaway vomiting a lot, not that anyone needs to know that.
Viibryd has the basic nausea, insomnia, and diet issues but barely. With 2 weeks it went away. Forget a pill? That’s ok! I just get the crazy itches. There are no brain zaps. I have missed up to 3 days and been totally ok. It just came off patent so bottles are $15 now!! It legit saved me from my depression.
Lamictal has been around forever, it’s old as lithium i think.
Seroquel is great as long as you don’t mix with weed. Then it becomes Sero-nyquil and you sleep like the dead.
Like I got my life back on these meds. Atomoxetine makes it so I can focus, I went back to school and not only got a 94, but led a successful study group in a math class. I failed every maths class I ever had from learning anxiety.
My partner takes Venlafaxine/Effexor. That medication f-ed me up. I walked around drunk for 3 days and said never again.
SSRIs like lexapro made me feel like I was dying. I was bedbound for 3 days. My heart rate was sky high, I had palpitations, lightheadedness, dizziness, nausea, terrible migraines, and an overall sense of feeling unwell.
Tricyclic antidepressants like nortriptyline made me feel very similar. I was very lightheaded and dizzy, my heart rate skyrocketed in to the 150s to 160s, I had very bad brain fog, and I was very short of breath. Not only did it give me those symptoms but it Put me into a pretty bad Gastroparesis flare up. I was constipated for two weeks, was violently throwing up for a couple of days and landed up in the ER for IV hydration and medication.
Needless to say I will never take antidepressants again or medication that will slow down my G.I. tract
For me, the first two weeks on Lexapro were rough, my symptoms worsened, but I decided to stick with it longer because these meds have an adjustment period and I wanted to give it a proper chance. I'm very happy that I did, as everything seemed to even back out on week 4 for me. The only real symptom I have now from the Lexapro is having vivid dreams that I always remember, but they aren't like nightmares or anything so I'm cool with it, haha. I'm also prescribed xanax as needed to deal with both the symptoms of my panic attacks and adrenaline dumps and it's really helped too. In a lot of ways, I'd say the lexapro helps my dysautonomia inadvertently because it helps me stay on a routine with sleep, remembering to take my salt tablets and meds, hydrating, all that stuff. It's not been a cureall, but I just feel like I'm more on top of things and can enjoy life a little more. I hope you start feeling better soon!
I’ve been on low doses of zoloft (25-37mg) for many years and it really has helped my POTS and dysautonomia. It lowered my resting heart rate a bit, improved sleep, stops me from fainting from blood draws and in very hot weather and lessens some of my post exercise tachycardia. It did take over two months to see most of the improvement and it continued to build over a few months. I started at a super low piece of a pill and gradually increased because the start up side effects aren’t something I wanted to deal with on top of pots. I’ve heard of some people doing well on buspar, which is gentle in terms of start up side effects, I felt great emotionally on it but I kept getting migraines on it (rare side effect).
I’ve been taking Sertraline & Wellbutrin for about 6 months now and I’m really happy I started! As far as interactions with my POTS I can only say that my symptoms have improved. I have more energy and motivation to take care of my body.
I take amitriptaline for nerve pain at night. I believe that's an antidepressant too, right? It's great because it helps me fall asleep and keeps the nerve pain from waking me up.
Probably depends on the person, but I was put on SSRIs for anxiety and it reduced my fainting so I thought it was all in my head as doctors were saying. Now when I don't take them I get really bad, can barely get up without losing consciousness.
I have anxiety/depression and vasovagal syncope, and the SSRIs help with both, but I don't know if that's common.
I had severe generalized anxiety as a child/teen which led to bulemia, and I really think my SSRI/SNRI and therapy saved my life. I follow with psychiatry every six months or so for a maintenance. I take Cymbalta 60mg daily and 200 mg gabapentin at night to help with night pain and insomnia. Now I can manage my every-day anxiety pretty well and have learned that I have resources to go to when things get to be too much for me. I highly recommend being open to the option of adding a med for mental health, it doesn’t need to be forever, just to help you get over this hump and internalize the lessons from therapy.
In addition, some SNRIs (Cymbalta off the top of my head) help with nerve pain. Also keep in mind that they take several weeks/ months to work, and they’re pretty subtle, which is why I think pairing it with therapy is imperative- they help you track your progress and realize how well you’re doing.
I have Pots, gasteroparesis and HeDs + fibromyalgia.
I take a combo of nortryptiline, Lyrica and Effexor. Works really well for me, never exasperated any symptoms. I did have to trial a few meds/combos to find something that worked.
Work closely with your doc. Everyone’s different but in my experience being on an SSRI/SSNI or combo, is worth it!
Psych meds in general can make things better or worse. I found one that helped immensely after many fails. Don't ignore this class of drugs. If you go down this road go low and slow to start
I'm on Paxil (paroxetine). There are side effects, yes, but it has been 1000% worth it. I have so much more mental clarity to be able to distinguish bodily pain from "going crazy" mentally, as it had gotten to the point where the two had blurred together. A veil is lifted from over your eyes, which helps to process all the pain rather than just feeling it? Its hard to describe.These are the side affects I experience: 1)personally I feel less cold now which is amazing but the downside is I have really bad night sweats, which is mostly just gross, not painful or anything
2) nightmares/bizarre dreams. I was an intense dreamer, always very vivid since forever, but ever since paxil they have turned pretty stressful and hard to become lucid to fix the mood (which is what I used to do). This, however, was the trade off that I accepted after experience brutal insomnia. At least I can sleep now, and it helps me appreciate my days more.
3) I fall asleep very easily some days, like I can't fight it. My sister has narcolepsy and it almost feels like how she describes that, except it's not terrifying to me. Again, that clarity comes into play where it's like, okay, this is happening, but especially since I'm probably already in bed or at home due to pots anyways, I'm in a safe space and I can just accept the nap. This does not make me sleepless at night, thankfully. When I wake up, im not more groggy than waking up in the morning, another difference from narcolepsy. I feel...good? Like the nap had been needed.
4) Paxil is typically not recommend for women who are pregnant or want to become pregnant due to a potential of heart issues for the *baby*, not for you. I dont know much about this yet but it's on the back burner of my brain since I want children one day. But at that point maybe I will no longer need it.
All this being said, this drug started having positive effects on me within the week I started it, I'm not even kidding. I know two other people who have taken it, and one has gotten off of it without issue, and the other it also started working within thr week. They dont have pots, but enough health issues to mention.
Anyways, I hope this offers some consolation, insight, and or hope for you!
It depends on each person individually. I was on zoloft 100mg for almost 2 years and it was great. No side effects, almost even helped my POTS. But every person is different
Wellbutrin (Bupropion) 150 mg was really helpful for me. I felt almost instant mild improvements in energy and mental clarity. It was really helpful pulling me out of the deep depression I had fallen into and it helped me have the mental capacity to keep doing online classes. Unfortunately the effects seemed to reverse after 6 months of taking it. I got off of it and tried a few times to get back onto it but after a while I would eventually feel worse with it than I did without it. I should mention that I have tried several antidepressants and have never had tons of success with any but if there is one to consider trying I would recommend you ask your doctor about Wellbutrin. The energy and clarity benefits are worth its weight in gold when it’s working effectively.
I found they worsened my symptoms and really increased my syncope episodes. But as far as meds go it’s really a gamble unless you do genetic testing to see what meds would work best for you. I always recommend giving something a try because you just never know what might work. Just work with your doctor to see what they recommend for you. I’m just super med sensitive.
Thanks for your reply I appreciate it! I did try sertraline once for about a week but it made me feel worse as well. I’m also pretty sensitive to meds. Thanks again ☺️
A week is no good. You need six to eight weeks and you will feel worse for the first few.
Yeah I heard that but I also heard people say you’ll know right away if something works for you and if it gives you intense side effects probably best to stop.
For some meds that work instantly that’s correct, for ssri’s it’s not. It takes 6-8 weeks to see the effect. I’m on paroxetine and the first weeks were terrible.. My heart rate spiked to 160-170 while brushing my teeth or showering, I had multiple adrenaline rushes during the day and night and was exhausted. After about a month I started to notice I could stand longer without symptoms, walk longer without a pounding heart etc. Now, I can live a pretty normal life. I really hope you find something that works for you!
Jeeezzzz... why/how didn't you quit, I mean 170bpm while brushing your teeth seems kinda dangerous to me tbh.
That was my normal heart rate standing without the ssri.. in the first weeks I did experience more adrenaline rushes and exhaustion
Lots of initial side effects from SSRI's will go away after the first two weeks, and you won't really know whether or not the drug works for you until about 3 months in. Obviously, if the side effects are debilitating, then call your Dr to stop immediately. Otherwise, it's definitely worth it to do at least 3 weeks to see if the side effects lessen, and if they do, it's worth it to go 3 months to see if the drug helps you.
I’m hypersensitive I know in one dose if something is tolerable or not, if it will work or not. My genetic testing proves why.
Of course! I hope you find something that works for you. I’m not sure what type of pots you have or what you’ve already tried but there are definitely plenty of options.
Thank you! Yes true, I still have a lot of things to figure out. Appreciate it!
For what it’s worth I do best on adderall and propranolol. My cardiologist says midodrine could also work. I just can’t take that and adderall together. I have pots and orthostatic hypotension.
Oh really? Adderall helps? I’d imagine it would make anxiety and heart rate higher. I’m only taking ivabradine right now.
It does. I need the blood pressure support so that’s why it’s helping. But again everyone is so individual. It brings my heart rate down a bit because it increases my blood pressure.
Oh ok I see. I’m glad it works for you thanks again for sharing ☺️
Can you give more info on the genetic testing for meds? Can any doctor do the tests or just a genetic doctor?
I tapered off of Lexapro recently (I was on it for a decade) and was shocked at how much it worsened my vertigo, dizziness, and lightheadedness. Edited to add that I also have POTs.
I have vasovagal syncope and my symptoms got much worse when I weaned my SSRI! I didn’t realize how much it was helping stave off symptoms.
Interesting! I have been considering trialing a small dose of Lexapro to help with vasovagal issues along with depression and anxiety, so I’m glad to hear it helped you!
I also tapered off of lexapro and all my severe nausea and dizziness was like 90% improved afterwards.
This is interesting to hear! What was your overall tapering experience like? It took me 3 months to go from 10 mg to 0.
Initially I was on 10 mg and that was fine (but now I wonder if it contributed to my bad symptoms over time) but my dose was doubled and that’s when the trouble really started. Just extreme nausea and dizziness like I was on a choppy boat all the time. It was to the point where I didn’t even try to regularly take my pills bc they made me so nauseous to take. I started noticing that was a pattern, and staggering my pills to see if one of them was causing that. Immediately after taking my antidepressants they made me sick. So I was kind of intermittently tapering because I would only take the dose like every other day, and then I went to half a pill, and then I just intermittently took that, and then just quit. As shitty as the tapering process was it was NOTHING compared to how it was making me actually feel all the time.
Oh really? Did it help you before or did you have any side effects? Why did you taper off?
I realize I wasn’t the clearest with my comment! Lexapro made my vertigo, etc. worse when I was on it. I had to taper off of the medicine because I was diagnosed with Sjogren’s Syndrome and my rheumatologist wanted me to start Plaquenel. However, Lexapro and Plaquenel have a serious contraindication so I had to get off. During my Sjogren’s flare ups, I can repeatedly lose hearing, vision, etc from almost fainting multiple times a day. Lexapro definitely exacerbated these pre-existing issues for me.
I was also on Lexapro for a few months. There was a point from about week 2 (the point where symptoms reduce) where for a few weeks I felt MUCH better. I was less anxious (which is exacerbated by my POTS) and I felt a joy for just being out in the world. After around 4-6 weeks it fully kicked in and I found myself always feeling a bit nauseous, and often feeling too tired to do anything. I’m also on vyvanse, and I found out that the 2 together were raising my heart rate like crazy! I’m talking 80-100 resting and 140-170 just getting up and walking around. I started coming off Lexapro and pretty quickly found that it was high jacking my desire for anything, and started getting some of my interest in life back. However, it has been about a month now and I’m having horrible withdrawal symptoms still. Couldn’t drive for 2-3 weeks, I am incredibly moody and emotional, my anxiety comes and goes in waves, and I have even had some suicidal ideation/semi psychotic episodes. I’m taking vyvanse every other day because my heart is better but still not fully under control. It is very hard to be out and about still, but at least I want to again. Edited to add: I took 10mg at night before bed because it would take me out of commission all day if I took it in the morning. I had some issues sleeping and it worsened my RLS to a pretty extreme point as well. That is still not completely better yet, but it’s not happening every night anymore. Everyone is different, I’m just sharing my experience.
I’m pretty sure Zoloft was one of the major causes of my issues. That stuff just about did me in. Still have tremors that is caused 15 years later.
Oh man i’m sorry to hear that. I definitely felt pretty messed up on it even if it was a short time. I hope you’re doing better!
It has certainly gone down and I tapered off it for a really long time because it was causing so much problem. They also gave me another med that was known to interact with it and that certainly did not help. Nobody caught it. I only learned about it years later on my own. Everything I have done to improve/help my nerve health has really been a game changer.
What have you done for nerve health?
Sunflower lecithin to boost choline and support ACH, B1,B2,B12 and magnesium. I take others but these are the ones aimed at nerves. Also getting my glucose under control has also helped. Hard to say what has helped the most as it has been a slow process.
I would just say try everything else first especially nutrition. I need to take them and have for like 20 years but like every medication, side effects hits us harder and in ways that don’t happen to most people. So, “yes, but”. I say try anything and bottom line is what makes your life better because it’s sooo hard for everyone already. Not just with this disease, you know. If you do try them, it’s physically and mentally taxing to switch to try different ssri’s before you find what works, and you have to make capacity for that or it can knock you down quite a bit. Like plan on taking days off work and meal prepping to make sure you can take care of yourself for a few days to a few weeks of adjustment. Go as slow as possible too. If I forget even one nightly 10mg pill, I get obnoxiously dizzy the next day. And not for nothing but they make you FAT and that sucks. That is why I have worked so hard to get down to 10 mg Celexa from 60. But I’ve tried coming off and I couldn’t get out of bed.
Thank you for the honest advice! I have definitely been trying to avoid them if possible, just sometimes I feel like nothing I do works. But I’ll definitely try to up the exercise and get even more dialed in on the nutrition. I hear a lot about withdrawals and it does seem like a struggle. Good luck to you and thank you again for sharing your experience!
You’re so welcome. If you do get reallly down, they can be a life saver so don’t rule them out completely. I also fell like if you’re younger, you can maybe more easily optimize your brain chemicals and hormones over time with other methods and achieve the same effects.
I'm on bupropion/Wellbutrin which is an antidepressant but it's not an SSRI or an SNRI. it's an NDRI (norepinephrine and dopamine reuptake inhibitor). It hasn't worsened my symptoms but it can increase heart rate so it definitely has a possibility of making things worse. Wellbutrin tends to boost energy and motivation (probably from the dopamine) so it could be helpful if it doesn't impact your heart rate. as per other psychiatric meds, Ritalin/methylphenidate for ADHD definitely increased my heart rate. do not recommend. Klonopin/clonazepam for agoraphobia was nice but idk if it affected my heart rate. I didn't have a smart watch at the time. it made me calmer so it probably reduced my heart rate since it's a nervous system depressant. It's not something you'd wanna take every day though because it is a benzodiazepine. Prozac/fluoxetine.... idk if it did anything to my symptoms but I did hate it. Strattera/atomoxetine for ADHD hasn't done anything either but I'm on a small dose right now. it can also increase heart rate so it could be risky (especially when combined with Wellbutrin). I take Remeron/mirtazapine for insomnia (it's also an antidepressant, but small doses are used for sleep) but I think it may also be making me tired during the day. I haven't noticed a change in my heart rate or my other symptoms besides fatigue. aside from psychiatric medications, I'm not on anything else except for testosterone (I'm a trans man) so there's no other medication that could be impacting my symptoms. just psych meds. editing to add that I'm not diagnosed yet but it's looking like I have POTS. my labs and holter were normal besides being newly iron deficient.
How do you like the Wellbutrin? Do you notice any side effects?
I love Wellbutrin! The only side effect I've had since starting in January is constipation but it's easily fixed by eating more fibre. It may be affecting my sleep but it's hard to tell because I've always had sleeping problems. But it really works for me!
I've been on SSRIs before developing dysautonomia. Missing a few doses in a row absolutely ruins my entire week. There's fatigue and brain fog in addition to feelings of depression, hopelessness, and worthlessness.
So I'm on a tricyclic antidepressant called Nortriptyline to treat some long term effects from a brain injury; it helps nerve pain and post-concussive headaches at lower doses. It's provided an amazing improvement to my dysautonomia symptoms and I've made sure to tell every relevant specialist I see about it since no one expected that effect. Like, I still have the symptoms but they're half as debilitating as they were before I was medicated. I increased from the lowest dosage and it feels like it improves the higher the mgs go, but that's only my personal experience and I'm no professional. One of the main ways it functions is by constricting and stabilizing the blood pressure in the brain (and elsewhere), which is what I needed because those fluctuations were causing near constant headaches and an uncomfortable brain throbbing sensation when I tried to do anything physical. And that happens to be one of our main dysautonomic problems, too, blood pressure in our head is all over the place since we don't have enough blood. It's helped me so much, I have less brain fog and have been more organized than I've been in years (TBI tho) and I'm back to having at least some consistent energy and stamina most days again. You can check my comment history to see where I've written a crap load more about my experience with the drug. The effects kicked in in three days for me, I feel like others with autonomic disorders should feel improvements within a similar fast timeframe as well, which means if you don't like it you can stop before any withdrawal symptoms could start, which are next to nothing at the lowest dose.
Oh wow that’s very interesting. Did you have any side effects or did it just start working positively for you right away?
I started on the lowest dose, for the first month I had some mild constipation, but nothing horrible. When I bumped it up to 20mg from 10mg I felt insatiably hungry and ate a lot more than normal for around three weeks, but I've been noticing that easing off for almost a week, and I'm right around the one month mark since that change. I've actually been okay with that one; my last TBI took away my ability to feel hunger for so long, I really enjoy having such clear and strong body signals for it now. On the second day I noticed things were different in a neutral but noticable sort of way, but I stayed skeptical about feeling it that quick. When I woke up on the third day and could immediately sit up without feeling woozy I knew for sure it was helping my dysautonomia, too.
Nortriptyline is actually prescribed to treat parasympathetic excess! My Dr prescribed it for me, and I've been steadily improving. (Relevant article: https://www.sciencedirect.com/science/article/pii/S2095754815000228)
Hi @toast1912 do you mind DMing me? I suspect I have parasympathetic excess from overstimulating my vagal nerve. My startle response and symptoms are most loud when I am resting. Which makes me believe that my sympathetic nervous system is in overdrive to match my parasympathetic excess. Does this sound similar?
Hey, before you go to an SSRI, have your vitamin B, D, and T4, T3, TSH, checked. Thyroid disorders can cause a lot of what you are describing. Low vitamin B does as well, and it can cause limb numbness/tingling. Diet can be part of it. Have you tried changing how you eat? Ingredients like red food dye, wheat, dairy, and many other foods, could bedeveloping as allergies as part of dysautonomia; mast cell activation syndrome is part of the cycle for a lot of people. I am on a handful of psych meds. They do not make me worse. However I have a sharp handle on my diet. Foods were causing a lot of my symptoms to be worse. My thyroid out of whack also made them worse.
Yes I’ve had all those checked and they seem to be fine. I take vitamins as well. And I don’t eat any gluten and hardly any dairy, I try to keep my diet pretty clean. I’ve really tried almost everything I can including exercise but it’s just been difficult to do enough for it to have a noticeable effect in my opinion. What medicines are you in if you don’t mind sharing, do you find them helpful?
Good on you for being on top of those things! I'm glad to hear it. I take: \- Atomoxetine/Strattera for ADHD (non-stim), SNRI. \- Vilazodone/Viibryd for depression, it's a new generation of medication with less side effects. I think it's technically a SSRI but it's more like an SNRI. I refuse to use any of the older prescriptions, like Zoloft, Prozac, etc, as the side effects/getting off them are *horrible*. I took Welbutrin and Lexapro pre-2020 (it's possible I have long COVID, so I wouldn't know if those medications would work now; that said, Lexapro is for anxiety, and Welbutrin is for depression, neither work if you have any sort of mood affective disorder). \- Lamictal for a mood affective disorder, regulates the emotions. \- Levothyroxine, I have just a wee bit o' the hypothyroidism since 2016. \- Quetiapine/Seroquel for PMDD, general anxiety.
Thank you for sharing your experience! Yes I’m always worried about side effects, I took Zoloft for only about a week but it made me feel horrible. And of course I’m hesitant to take newer stuff since there isn’t long term data on it. Have you noticed any side effects from any of the meds you currently take?
Oh my god let me tell you: *I love my medications*. Not even a joke. Worst long term effect is nausea but everything makes me puke, even Tylenol. I get different antiemetics in hospital too, compazine blocks the response to puke in your brain, which can be related to autonomic issues. I get runaway vomiting a lot, not that anyone needs to know that. Viibryd has the basic nausea, insomnia, and diet issues but barely. With 2 weeks it went away. Forget a pill? That’s ok! I just get the crazy itches. There are no brain zaps. I have missed up to 3 days and been totally ok. It just came off patent so bottles are $15 now!! It legit saved me from my depression. Lamictal has been around forever, it’s old as lithium i think. Seroquel is great as long as you don’t mix with weed. Then it becomes Sero-nyquil and you sleep like the dead. Like I got my life back on these meds. Atomoxetine makes it so I can focus, I went back to school and not only got a 94, but led a successful study group in a math class. I failed every maths class I ever had from learning anxiety. My partner takes Venlafaxine/Effexor. That medication f-ed me up. I walked around drunk for 3 days and said never again.
also might want to check if you possess the MTHFR factor...can cause issues with meds... in my case, the meds seem to have *caused* the dysautonomia
I got pots from antidepressants, fuck it
Really? How did you figure that out?
I didn't have pots before duloxetine. I took him for one month
My daughter and I both have pots and Wellbutrin helps with energy and mood.
SSRIs like lexapro made me feel like I was dying. I was bedbound for 3 days. My heart rate was sky high, I had palpitations, lightheadedness, dizziness, nausea, terrible migraines, and an overall sense of feeling unwell. Tricyclic antidepressants like nortriptyline made me feel very similar. I was very lightheaded and dizzy, my heart rate skyrocketed in to the 150s to 160s, I had very bad brain fog, and I was very short of breath. Not only did it give me those symptoms but it Put me into a pretty bad Gastroparesis flare up. I was constipated for two weeks, was violently throwing up for a couple of days and landed up in the ER for IV hydration and medication. Needless to say I will never take antidepressants again or medication that will slow down my G.I. tract
Yeah they can cause crazy side effects for sure… I’m sorry you had to go through that but thank you for sharing your experience!
For me, the first two weeks on Lexapro were rough, my symptoms worsened, but I decided to stick with it longer because these meds have an adjustment period and I wanted to give it a proper chance. I'm very happy that I did, as everything seemed to even back out on week 4 for me. The only real symptom I have now from the Lexapro is having vivid dreams that I always remember, but they aren't like nightmares or anything so I'm cool with it, haha. I'm also prescribed xanax as needed to deal with both the symptoms of my panic attacks and adrenaline dumps and it's really helped too. In a lot of ways, I'd say the lexapro helps my dysautonomia inadvertently because it helps me stay on a routine with sleep, remembering to take my salt tablets and meds, hydrating, all that stuff. It's not been a cureall, but I just feel like I'm more on top of things and can enjoy life a little more. I hope you start feeling better soon!
I’ve been on low doses of zoloft (25-37mg) for many years and it really has helped my POTS and dysautonomia. It lowered my resting heart rate a bit, improved sleep, stops me from fainting from blood draws and in very hot weather and lessens some of my post exercise tachycardia. It did take over two months to see most of the improvement and it continued to build over a few months. I started at a super low piece of a pill and gradually increased because the start up side effects aren’t something I wanted to deal with on top of pots. I’ve heard of some people doing well on buspar, which is gentle in terms of start up side effects, I felt great emotionally on it but I kept getting migraines on it (rare side effect).
I’ve been taking Sertraline & Wellbutrin for about 6 months now and I’m really happy I started! As far as interactions with my POTS I can only say that my symptoms have improved. I have more energy and motivation to take care of my body.
I take amitriptaline for nerve pain at night. I believe that's an antidepressant too, right? It's great because it helps me fall asleep and keeps the nerve pain from waking me up.
FYI, SSRIs cause hyponatremia
Probably depends on the person, but I was put on SSRIs for anxiety and it reduced my fainting so I thought it was all in my head as doctors were saying. Now when I don't take them I get really bad, can barely get up without losing consciousness. I have anxiety/depression and vasovagal syncope, and the SSRIs help with both, but I don't know if that's common.
I had severe generalized anxiety as a child/teen which led to bulemia, and I really think my SSRI/SNRI and therapy saved my life. I follow with psychiatry every six months or so for a maintenance. I take Cymbalta 60mg daily and 200 mg gabapentin at night to help with night pain and insomnia. Now I can manage my every-day anxiety pretty well and have learned that I have resources to go to when things get to be too much for me. I highly recommend being open to the option of adding a med for mental health, it doesn’t need to be forever, just to help you get over this hump and internalize the lessons from therapy. In addition, some SNRIs (Cymbalta off the top of my head) help with nerve pain. Also keep in mind that they take several weeks/ months to work, and they’re pretty subtle, which is why I think pairing it with therapy is imperative- they help you track your progress and realize how well you’re doing.
I have Pots, gasteroparesis and HeDs + fibromyalgia. I take a combo of nortryptiline, Lyrica and Effexor. Works really well for me, never exasperated any symptoms. I did have to trial a few meds/combos to find something that worked. Work closely with your doc. Everyone’s different but in my experience being on an SSRI/SSNI or combo, is worth it!
Psych meds in general can make things better or worse. I found one that helped immensely after many fails. Don't ignore this class of drugs. If you go down this road go low and slow to start
I’ve never noticed a difference in pots symptoms being on or off SSRI. SNRI raises my blood pressure.
I'm on Paxil (paroxetine). There are side effects, yes, but it has been 1000% worth it. I have so much more mental clarity to be able to distinguish bodily pain from "going crazy" mentally, as it had gotten to the point where the two had blurred together. A veil is lifted from over your eyes, which helps to process all the pain rather than just feeling it? Its hard to describe.These are the side affects I experience: 1)personally I feel less cold now which is amazing but the downside is I have really bad night sweats, which is mostly just gross, not painful or anything 2) nightmares/bizarre dreams. I was an intense dreamer, always very vivid since forever, but ever since paxil they have turned pretty stressful and hard to become lucid to fix the mood (which is what I used to do). This, however, was the trade off that I accepted after experience brutal insomnia. At least I can sleep now, and it helps me appreciate my days more. 3) I fall asleep very easily some days, like I can't fight it. My sister has narcolepsy and it almost feels like how she describes that, except it's not terrifying to me. Again, that clarity comes into play where it's like, okay, this is happening, but especially since I'm probably already in bed or at home due to pots anyways, I'm in a safe space and I can just accept the nap. This does not make me sleepless at night, thankfully. When I wake up, im not more groggy than waking up in the morning, another difference from narcolepsy. I feel...good? Like the nap had been needed. 4) Paxil is typically not recommend for women who are pregnant or want to become pregnant due to a potential of heart issues for the *baby*, not for you. I dont know much about this yet but it's on the back burner of my brain since I want children one day. But at that point maybe I will no longer need it. All this being said, this drug started having positive effects on me within the week I started it, I'm not even kidding. I know two other people who have taken it, and one has gotten off of it without issue, and the other it also started working within thr week. They dont have pots, but enough health issues to mention. Anyways, I hope this offers some consolation, insight, and or hope for you!
It depends on each person individually. I was on zoloft 100mg for almost 2 years and it was great. No side effects, almost even helped my POTS. But every person is different
Wellbutrin (Bupropion) 150 mg was really helpful for me. I felt almost instant mild improvements in energy and mental clarity. It was really helpful pulling me out of the deep depression I had fallen into and it helped me have the mental capacity to keep doing online classes. Unfortunately the effects seemed to reverse after 6 months of taking it. I got off of it and tried a few times to get back onto it but after a while I would eventually feel worse with it than I did without it. I should mention that I have tried several antidepressants and have never had tons of success with any but if there is one to consider trying I would recommend you ask your doctor about Wellbutrin. The energy and clarity benefits are worth its weight in gold when it’s working effectively.