LindsayIt occurred to me recently that I have a bad habit of writing a post about some issue that I’m currently having and then never following up, leaving my readers to wonder what happened. Sometimes I will even receive comments on older posts or private messages asking if/how whatever issue was resolved. One particular post for which I received a lot of questions is the post I recently wrote about stopping the selective serotonin reuptake inhibitor (SSRI) I was taking: Celexa.
SSRI’s are often used to treat depression and thus are often referred to as antidepressants. As you may remember from a previous post, people with postural orthostatic tachycardia syndrome (POTS) are often prescribed SSRI’s for off label use in the treatment of POTS. (If you’re interested in other common POTS treatments, many of the journal articles listed in the News section of this blog discuss treating POTS). Balancing serotonin levels has shown to improve nervous system function. However, after taking Celexa for over two years for POTS, I had not noticed much difference, and if I hope to have kids someday, I would need to stop it anyway. I was also starting to feel a little desensitized to my surroundings. I felt like I wasn’t reacting properly to emotional situations – If something sad happens, it’s normal to be sad. It was like I was emotionally dead, and I didn’t like that. Isn’t having emotions part of what makes us human? Aren’t emotions part of why life has meaning?
- …I want to be med-free.
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I stopped taking the Celexa in November. As I was only taking 5mg, I decided to just stop altogether. I immediately began experiencing withdrawals, the most frustrating of which was the “brain zaps”. It was as if someone had taken a live electrical current and put it to my brain. I also did a 180 and instead of being unemotional, I become overly emotional. The side effects lasted longer than I expected, at least two months. So, if you recently stopped a SSRI and experiencing withdrawals, I feel for you – I really do. It’s awful. But, the good news is: it does eventually go away.
It has been almost three months since I stopped the Celexa, and it has been at least a few weeks since I experienced any side effects. Now, I’m down to taking just one medication for dysautonomia, a beta blocker.
However, since stopping the SSRI, I’ve had issues with waking up every night, multiple times per night, with bad tachycardia and a panic feeling. I don’t know if that means the SSRI was actually helping, and now without it I’m having issues, or if something else is going on. I switched to taking the beta blocker in the morning now, and that has helped a little, but it’s causing issues with increased fatigue throughout the day. Fatigue is a side effect of beta blockers, and in the past I chose to take it at night to help me sleep through the night. Hopefully this is one of those things that just takes a little time to get used to. I’ve been taking leftover cough syrup with codeine every night, in part to help get rid of this lingering cough, and in part to help me sleep through the night without waking up feeling like I’m having a heart attack. But eventually the cough syrup will run out, and I will have to find another answer.
“To the dumb question “Why me?” the cosmos barely bothers to return the reply: Why not?” – Christopher Hitchens, Mortality
Smell ya later.
– Linds
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So, I found your post because it randomly trackbacked (is that a word? er, maybe trackedback?) to my own blog — specifically to a blog post I wrote about withdrawing from Celexa.
Anyway, that part’s irrelevant, kinda — I just wanted to say hello and mention what perfect timing this is for me. I’ve been reading about POTS recently because, well, frankly, my heart rate definitely spikes when I stand up. It’s worse at times and better at times, and I’m trying to parse out whether it’s linked to my anxiety or not! I just installed one of those heart rate monitor apps on my phone that has a sit down/stand up test — and I’m scoring SO poorly!
Anyway, I’m definitely going to follow your blog now — love it!
Hi Summer, thanks for your comment! Your blog is great – I’m glad I found it.
I find your comment to be very interesting, especially because a lot of people with POTS are misdiagnosed with anxiety in the beginning. A lot of POTS symptoms can mimic anxiety, and anxiety itself can be a symptom of POTS. Recording your heart rate when sitting/standing is a great place to start!
What’s the app called that has the sit down/stand up test? I hadn’t heard about that yet!
It’s called “Instant Heart Rate” by Azumio — but there’s an additional in-app purchase required to get the sit/stand feature. It measures your pulse via your finger on the camera with the flash activated. It works fairly well, so long as your hands are warm and you’re generally staying quite still!
I had my first panic attack over ten years ago — and the first one didn’t cause me any heart-related concern, but the others have. I’d found that it was way easier for me to feel anxious/panic if I were standing up. Moving would help, but standing still = ahhhh, not good. I’d often bend a little bit forward to slow down my heart (and to this day I still have shitty posture because of this).
So, who knows! Anxiety is expensive, so I’ve had all the major heart-related tests. Holter, echo, EKG…no one’s ever mentioned POTS as a possibility, but I think it’s a possibility. One doc (where I lived last) had me on propranolol to help stop those scary anxiety-induced heart palps. I REALLY wish I could go back in time and do the sit/stand test then to see if there’d be a difference! (I was more concerned about getting rid of the palps — I had not idea POTS was even a thing at that point. All I knew is that I got anxious when I stood up!)
I’m on Zoloft right now — close to the max dose, actually — and I still “fail” the sit/stand test every time. So, while I’m certain anxiety/panic is a huge problem for me, it’s totally possible POTS could coexist with it. I finally have a lovely doc who takes me seriously, so next time I’m there, I’m going to ask her about it.
Been there, done that…w/d from any SSRI sucks big time and docs are not educated about it at all. I’ve made so many adverse reaction reports tot he FDA they probably know my stats quite well. The w/d issues are not published not admitted to by the pharma companies so it is up to us – the users – to figure it out on our =own and help each other.
BTW, i’ve been on a beta blocker for about 6 mo now and my labile autonomic sx are VERY much under control. My heart rate rarely goes over 80, and I’ve only had one pass-out – I was standing up for an hour and a half though…
Most docs don’t consider beta blockers b/c they LOWER BPs, but they also STABILIZE them. Lucky I found a cardiologist that knew about this and said “here, you’ll be fine with this.” She was right.
Ciao,
Lori
that’s great that a beta blocker has helped your symptoms so much, Lori! even on atenolol i still get high heart rates while standing sometimes. my bp is lower on the beta blocker, but still within the normal range, so no worries there.
so glad you’ve made adverse reaction reports to the FDA. we can’t count on the pharmaceutical companies to disclose that stuff!
Can I ask how high your heart rate generally gets while standing?
Great post Linds as I have 3 lots of these meds in my draw that I was never game to take – SSRI – lexapro, SNRI – effexor, and tetracyclic – mirtazapine (remeron). I really wanted to try the remeron as it helps with sleeping due to having an antihisthamine effect but I am worried it will affect my bp. I haven’t slept without waking since starting my bb – atenolol. I take it at night and I wake up at about 4-5am every morning for an hour or 2. Sometimes I get the tachy and adrenalin feeling during that time. I recently dropped down to 6mg atenolol (hardly worth it?) to try stop that and it has a bit but it’s not stopping my standing tachy. Like you, I tried my atenolol in the day and couldn’t continue it as I felt too fatigued and zombie like. I haven’t tried the 6mg of a morning only though, that was 12.5mg – your dose now I think from memory. I have a script for metoprolol and I’ve been reading lots about the two vs each other. I am tempted to change but of course apprehensive.
It would be interesting to know if anyone has experience on metoprolol vs atenolol and how it is working or if they made a similar switch. I’m reading a lot about potsies being on nevibolol and bisoprolol now (could be spelt wrong).
Hi Lori, what beta blocker are you on? I’m very interested as my standing heart rate is still 100+ on my low dose atenolol. Thanks!
Jo, any idea what the benefits are of metroprolol vs. atenolol? i know a few POTSies on metroprolol, i’ll have to ask how they like it.
Linds I know a few also on metoprolol. It seems to be more popular. I just know that atenolol is about double the strength of metoprolol so my 6.25mg would equal 12.5mg of metoprolol. I think there’s a slow release metoprolol (once a day like atenolol) but most of the potsies who I know in my group are just on the normal metoprolol and take 12.5mg x 2 per day.
Jo, you may find this study interesting – http://link.springer.com/article/10.1007%2FBF00542203#page-1
it compares use of metroprolol to atenolol. from the study, it sounds like those using metroprolol had slightly more sleep issues, but otherwise, not much difference.
Thanks Linds, I’ll have a read 🙂
oh, wait, that link tries to get you to buy the article try this for page 1 – http://link.springer.com/static-content/lookinside/372/art%253A10.1007%252FBF00542203/000.png
and for page 2, change the very end of the link from /000.png to /001.png
and so on for additional pages
Summer, my heart rate can go up to 180 on standing. It is actually about 20 beats less when leaning and I often lean like you for that relief but never knew why. Your heart rate should increase 30+ beats from sitting to standing, or greater than 120 beats for the pots diagnosis criteria.
Thanks for the info, Jo! I should test myself after standing for more than 5 minutes — I haven’t done that yet — to see what happens. (I used to sing in high school chorus and college choir, and OH I can’t even tell you the number of times I had to sit down on the risers during rehearsal!)
I’ve never tested for standing more than 5 mins either summer as my rise is instantly and I doubt I could stand for that long. I have tested though after moving around though for that long and my heart rate either slightly improves or stays the same. My blood pressure jumps around too. Does yours?
I agree with Lori. The startling awake at night is medication withdrawal. It will pass, but it might take longer than most people would expect. Psych meds change the way the brain works, and it often takes months for it to recover normal functioning after withdrawal. And yes, this is something that you have to find out for yourself. Most doctors are not aware of the post acute withdrawal syndrome that can result from quitting antidepressants.
I should change what I said above, MANY doctors are unaware of the FULL EXTENT of what quitting medications can do.
Thank you for keeping us updated. I took an antidepressant early on in this illness but I am not sure what type it was. I remember the name, Remeron.
Hi Kathryn, how did you find the remeron? Did it lower your bp at all and are you also on other meds such as a beta blocker? Thanks in advance!
I’m glad I’m not the only one who leaves posted topics and then never comes back to tie them up. 🙂 And, I too stopped Celexa months ago – but not for the same reasons, obvi. 🙂 Do you need something to help you sleep? Can you take homeopathic things? I have found these amazing things called “Moon Drops”. I don’t feel drunk in the morning and they help me sleep through the hot flashes (better than Ativan although I do still use that from time to time.) 🙂
did you have any problems getting off of celexa? i tried melatonin to help me sleep, but that gave me awful tachycardia. i had not heard of “moon drops” – i’ll have to check it out. thank you for mentioning it!
Linds, It’s interesting in that link you posted re: metoprolol vs atenolol that they compare 200mg vs 50mg. So atenolol must be 4 x stronger? It could be a factor as to why a lot of drs seem to give out metoprolol over atenolol for pots – as we potsies don’t tolerate high dose medications well. I’ve gone down to about 5mg of atenolol I think it would be once I’m finished trimming the tablet – I was on 25mg split in 2 doses and felt like a zombie. As far as the tachy goes I think the 5mg doesn’t do as well but I feel more ‘with it’ and I’m not getting the unapposed a receptor stimulation so much such as the sweaty palms and feet and urge to go as often. Wonder if my 5mg is therefore equivalent to about 20mg metoprolol ….
Oh, its ironic I found this today when I did… I was on Celexa first, and after my room mates found me unconscious and seizing on the kitchen floor, a trip to the ER made us go “We’re not taking this anymore.” Same side effects as you mentioned. My cardio then put me on Paxil, an other SSRI. I once again ended up in the hospital because I was having such a bad time with SSRI’s and no one was listening, but when I stopped taking them, yep, withdrawl sucked, but I know that I have to get off this type of med. It isn’t helping my dysautonomia, it’s making me suicidal… yeah, i’m so done.
I shake with mine, and am still shaking. The little electric shock feelings are the worst. The migraine headaches, horrible. I’m so glad I’m not the only feeling this way on this type of med.
Thanks for your comment! I’m sorry to hear you’re going through the same thing! How long have you been off SSRI’s? Are you on anything else that helps your dysautonomia?
Sorry for the delay in response, I’ve been off them since the end of January when I had my Paxil crisis! and I elected to no longer take them in the hospital. I got yelled at by my cardio for stopping them, but even with the withdrawals, it’s been a cake-walk.
So far they have me on midodrine and florinef for my dysautonomia, and are looking into other therapies because these seem to be causing other issues in me.
Hi there i am also currently suffering long term withdrawl side effects i stopped taking the meds for the loss of abilty to feel real emotions and fatigue felt like an empty shell just floating by day to day i quit cold turkey that was a bad few weeks i have been celexa free since last summer still suffering from some of the damage of long term exposure to to much serotonin also the ability to form connections with people post celexa my brother had children last year i feel nothing toward them sad to say i guess hard to express how u feel when there is no emotionial feeling toward it your panic attack or anxiety was that an issue before celexa i got the same after being on effixor and has been permanet try to avoid stressors like excessive sugar consumption lower caffine intake eating less carbs more protein and healthy fats try to avoid simple they put stress on adrenals increasing anxiety i take propanolol when needed more effective thay way plus no fatigue what works they best for me is a short 20-30 min walk just walk normal pace and let your mind relaxe in thought wooded trails with not much traffic or noises afterward drink a glass of v8 or oj makes a big diffrence discovered that by accident vitamin c is good for stressed. Adrenals have you found anything that had helped with the dulled emotional state i have had little improvement with that and had excessive irritability until just recently i gave up cheese for related digestive issues loose stool daily for over six months after celexa im lactose intollerant and thought that might help i use to tolerate cheese solved both probloms also look up ssri effect on adrenals info will help with fatigue and anxiety hope my experiance with ssri meds helps you in some way feel free to email me and good health