Well it’s started up again. Last time I discovered the horrendous experiences of withdrawal while coming off of a central nervous system muscle relaxer that was causing breath suppression and other problems. This time I am coming off an anti-depressant (SSRI) I have been on for over 10 years. Guess what? It’s even worse.
Let me back up some. When I was 14 I started to develop psychological issues that eventually manifested into depression and anxiety and culminated with a full on mental break down. I got handed a couple bottles of pills, sent to therapy, and told “surprise, you’re bipolar and depressed and maybe a little psychotic..whooo”. After many years of therapy, bad and good psychiatrists, diet changes, and the prompt removal of one very nasty medication (Risperadol is literally THE WORST DRUG OUT THER), I’ve managed to stay relatively stable for 5 years. I learned to control my anxiety and panic attacks, discovered how to discern between chemical and situation depression, and even found ways to combat the molecular deficiencies my body had. I was ready to come off the medications and see how I was going to do… NOPE. Jellyfish attack put that all on the back burner.
Yet we have discovered something new. Last year my new doctor, who is handling my current conditions and cases, mentioned he believes my newly acquired POTS may not be genetic, but actually a side effect of the drug interaction between Lexparo and my other medications. It’s also a well documented side effect. Fun fact: you can develop any side effect or reaction to a medication at any time after you begin taking it (in 2 day or 2 months or 2 years). Surprise surprise, Lexapro could be the source or a factor in my POTS.
Now on top of POTS I have Dysautonomia. Essentially this means that my body cannot maintain homeostasis and the signals are all wrong. Think mini strokes without brain death and the capability to be reversed (More on this another day). POTS in it of it’s self can exist on its own but it usually has something causing or triggering it. While the trifecta of conditions, MCAS, POTS and EDS(Ehlers-Danos syndrome- which I may or may not have, we just can’t test right now) is very common, there are many things that can trigger them to be more severe. In my case, I faint after standing or sitting up right for more than 10 seconds. If we can treat the Dysautonomia and eliminated the Lexapro, I may have a significant improvement in my POTS and instead only faint if I were to stand up very quickly.
So, back in November we began to titrate me off Lexapro. We were relatively easily able to drop from 5mg to 2.5mg. I’ve been on 5 mg for years (it’s basically a children’s dose) and I did pretty well at first. Suddenly. I wasn’t okay. I had Gastroporesis again. i was vomiting up everything. We ended up having my Lexapro compounded into a liquid so it would stay down better and we could control the amount easier. I started having tremors and shaking again as well. We went back up again to 3.75 mg and waited it out. Then I began to do some digging into why this was such an issue again. And there it was. A collection of research explaining that SSRI withdrawal is worse than quitting heroin cold turkey. The withdrawal can last for months to years after the last dose. And, of course, the top 4 hardest medicines to come off included Lexapro.
2.5mg is the witching hour. Most people seemed to be able to get to that point but after that, everything seemed to go wrong. When we tried to titrate me down even slower (instead of dropping .1mg every day or so we tried it every 5 days. Suddenly I’m seizing, spasming, sick as can be, and having strange reactions again. My hearts palpitating constantly, my blood pressure has sky rocketed into the 180s and above, I can’t sleep, and I can’t function again. So back up we went again to try and stabilize me.
But why is this happening? Well, like any drug Lexapro has a half life, which is the time it takes for the medicines potency in the body to be reduced by half (so 5mg to 2.5 mg). Lexapro’s half life is around 8-16 hours depending on the person. So essentially, at the 96 hour mark, most of the original amount has been depleted in the point-something percent range and it’s caught up to your body. That’s why I was having what looked like delayed reactions. When you give back the body what it’s craving, it’s not instantaneous like an opioid, it takes time to work.
Another factor to consider is that fact the SSRI’s are selective serotonin re-uptake inhibitors. Basically they keep the serotonin molecules bouncing around and sending signals into your neural synapse longer than they normally would because your body doesn’t naturally produce enough to send the right amount of signals. Over time, your body gets lazy and begins to rely on this medicine to extend the life of your serotonin NTs (neurotransmitters) and produces less and less. As a result, when you take away that helper, you now don’t have enough produced to regulate normal functions let alone enough to keep you feeling happy and not anxious. Serotonin is a powerful neurotransmitter that does a lot more than keep you feeling good.
So back to my adventure. We went back to 2.5mg and stayed there for a month while I dug into research as to why the hell I was having such a hard time. I wasn’t having all the invasive thoughts or depression, just physiological problems. Eventually we started again. The recommendation from one fo the leading researchers on Lexapro and it;s dangerous side effects (As well as the withdrawal issues) suggests a 2%-5% decrease every 2 weeks or so to allow your body to adjust. The longer you’ve been on the drug, the harder it is to come off. What;s really interesting is that doctors actually have ZERO idea how to get people off this drug. My pain doctor wanted to put me on a medicine they use for opioid withdrawal. Of course I couldn’t take it because it interacted with every single medicine I was on. Some medical professions have recommended taking a pill every other day, lowering the dose by half for 3 days then stopping, titrating down by 1/4 over 3 weeks then stopping, the list goes on and on. Unfortunately, there are NO medical doctors whose sole job is to work with patients in withdrawal for anything OTHER THAN OPIODS OR HARD DRUGS. No one really studied how to get people OFF the drugs they started them on. Even the drug trials don’t discuss that. So your choice is really stay on the drug forever and hope you don’t get side effects or hope you can come off of it with zero problems. Not really a good solution in my book.
But back to my current conundrum. I’ve managed to restart titration again at a much slower pace. We have gone back to slow drops over a few days and will continue to do so until I hit the 1mg mark. So far, besides the Gastroporesis, I haven’t developed anything new or seen the return of my spasms and tremors. So let’s just hope it STAYS this way until I can finally come off this damn drug.
Life On Fire 