Synthem Posted January 29, 2015 Report Share Posted January 29, 2015 Hey forum. I believe the last time I posted I may have mentioned a new prescription for Sertraline (Zoloft) to treat dysautonomia related brain fog, concentration difficulties, and fatigue. Well, I had one heck of an exciting weekend. Long story short, Sertraline triggered something called Reversible Cerebral Vasoconstriction Syndrome, where the arteries in my brain were constricting/spasming, causing thunderclap headaches and neuro symptoms related to brain ischemia/stroke.I'd been told to expect lots of side effects the first few weeks, but I knew something was wrong, so I went back over the drug info and googled a few terms I wasn't familiar with. That's when I read that the new neuro symptoms and the TCHs were all related to Reversible Cerebral Vasoconstriction Syndrome (also known by a variety of other names.) It's not well understood at the time, but some research going on outside of the U.S. has shown a connection between RCVS and SSRIs. It seems it's not as rare as was thought and is being increasingly diagnosed in connection with SSRIs. I ended up consulting the on-call emergency neuro, going to the ER, and eventually seeing my POTS neuro. All agreed the Sertraline was the cause and that I had RCVS, though they decided not to do any imaging tests since my symptoms were not actively problematic— and supposedly there's not much they can do to treat the RCVS, only complications related to massive bleeding and aneurysms, which I wasn't having. All this happened over the weekend before I was scheduled to double my dosage. The ER docs said catching it when I did was important and they really didn't know what would've happened if I had increased the dose. For the next month I've got to avoid triggers of the RCVS and its related complications (stroke, SAH, etc.) So pretty much, no bending over, no pool, no straining, no physical exertion, no getting angry, no fun of any kind. It was also theorized that I was having toxic syndrome due to the sertraline, caused by a suspected genetic abnormality of P450-2D6 (CYP-2D6) but that didn't explain the TCHs and neuro symptoms— just something they thought might have been going on simultaneously.POTS neuro said he'd never seen sertraline cause RCVS. The more commonly recognized culprits are Paxil and SNRIs, he said. Because many doctors aren't aware of this potential reaction, and how under diagnosed it is, I thought it would be good to share my experience with you guys. In some countries there is now mandatory procedure for testing for RCVS and related complications in people who show up to the ER with thunderclap headaches who are taking drugs known to cause it, but in the U.S. it is not recognized or screened for and often flies under the radar until the patients have serious complications, which might've been prevented if the responsible drug was immediately discontinued. Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted January 29, 2015 Report Share Posted January 29, 2015 Thank you for sharing Bird and I'm sorry you had to go through this. This is especially useful since SSRIs are considered one of the main lines of therapy for POTS patients, according to one of my doctors. Did your doctors offer you any non-SSRI alternative after what you went through? Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 29, 2015 Report Share Posted January 29, 2015 That is really scary. I'm so sorry you to to go through this. I really appreciate you sharing this with us. Take care. Katie Quote Link to comment Share on other sites More sharing options...
Synthem Posted January 29, 2015 Author Report Share Posted January 29, 2015 Sideofsalt: As of right now, my doctors have postponed trying me on any new medications (by my request, but they also thought it was a good idea) until I can be tested/evaluated for the P450-2D6 (CYP-2D6) enzyme abnormality since that effects the ability to metabolize a great deal of medications. Thankfully scary was the worst of it, and I didn't show any signs of lasting damage in my neuro evals. At least now the clinic knows it can be a problem! Maybe if the doctors are more aware of this possibility it'll save another potsy trouble down the line, and they'll know to send anyone with TCH side effects to the ER. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 29, 2015 Report Share Posted January 29, 2015 Thank you for sharing this. I had never heard of this connection. Quote Link to comment Share on other sites More sharing options...
xRobin Posted January 30, 2015 Report Share Posted January 30, 2015 Hi, so sorry you went through this! How scary, and thanks for educating all of us. I had never heard of this. Please be careful, my Dad had his second stroke two weeks ago and it's been life changing and horrible. If you have any signs of stroke, go go go go to the ER! Strokes are truly a nightmare. Quote Link to comment Share on other sites More sharing options...
statesof Posted February 2, 2015 Report Share Posted February 2, 2015 If you don't mind my asking, what symptoms were you having from RCVS that first brought you to the ER? Quote Link to comment Share on other sites More sharing options...
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