Serotonin Syndrome after quitting antidepressants?
March 10, 2009 12:30 PM   Subscribe

Could I possibly have Serotonin Syndrome even though I've been off anti-depressants for two or three years? And whether I have it or not, what's the best way to get a doctor to hold my hand while I try the recomended treatment for it; an antihistamine called Cyproheptadine (brand name Periactin) that blocks Serotonin receptors?

I've had health problems most of my life, but developed my current set in 1995. At first, I thought it was the flu. Fevers, night sweats, fatigue, constipation and diarrhea. But as those symptoms decreased, new ones arose. I was incredibly tense, agitated, and restless. I felt like I wanted to peel off my own skin. I literally could not relax. It felt like someone had my neck in a vice. When I tried to relax - laying down in bed, comfortable and peaceful - I'd feel a horrible surge of restlessness and agitation. It's hard to describe, but it felt like an electric eel wrapping itself around my spine, delivering a constant voltage. Then, the involuntary movements would kick in. I'd start flailing around, my head jerking to the side, my legs twitching. I wouldn't return to "normal" until I once again tensed up completely. In addition to all this, i was incredibly anxious. I could barely even talk to people. I couldn't do anything. Everything made me freak out.

During and prior to this period, I was on and off anti-depressants pretty frequently. If I took more than a tiny amount, they made me wired, talkative and fidgety. If I took too little or didn't take any at all, I was depressed. So I was always trying, and usually failing, to find a happy medium. I'd take them until I felt better, then stop. A few weeks would go by, I'd get depressed again, and the cycle would repeat.

For the mystery problems, though, there didn't seem to be any treatment. Finally, desperate, i tried a medication that had been prescribed to a family memember; a muscle relaxer called Flexeril. It permanently knocked my restlessness and tension down a notch or two, but my involuntary movements got more frequent (also permanently). Scared and having no idea what was happening, I didn't take any more Flexeril. I did, however, continue taking anti-depressants as before.

I's been fourteen years and, in that time, I've tried countless treatments. Nothing's done much good. I did finally stop taking anti-depressants in 2006 or thereabouts. I went through withdrawal for several months, but when all was said and done, very little was different.

Then, recently, I read a description of Serotonin Syndrome. This disorder is caused by taking anti-depressants or other serotonin boosting medications. It causes fevers, sweating, involuntary movements, restlessness, and dry mouth; all of which I have or have had. (I can't seem to find the links for the following info, but I did read it somewhere on the web). The involuntary movements tend to be in the head and neck, which is where mine are, for the most part. There's a characteristic foot twitch; you bend the foot upwards at the ankle, then push it back down again and the foot twitches repeatedly. My foot does that. The problems are made worse by a number of different neurotransmitter enhancing drugs, including dopamine boosters like Sinemet. Sinemet and others on that list do make my problem worse. The only thing that made it better was, as I said, Flexeril. And it turns out that Flexeril blocks serotonin receptors.

So S.S. sounds like a pretty good fit, right? Only one problem. I just got off the phone with a psychiatrist who was adamant to the point of raising her voice; you just can't have Serotonin Syndrome if you've been off serotonin-boosting drugs for years. I can't find any direct statements to that support this assertion, but it does seem implicit in all the available material.

So, question number one is... Is it possible for me to have Serotonin Syndrome even though I quit the meds a while back? I have been using magnesium and malic acid to keep my mood up. When I was taking a lot of them, I was behaving in a manner that might be considered manic (starting lots of big, complex projects; making overly optimistic plans, etc.). Could the magnesium and malic acid be increasing my Serotonin? It seems terrribly unlikely, but thought I'd throw it out there.

Now, the most popular treatment for Serotonin Syndrome (besides taking away the offending meds) is a drug called Cyproheptadine (brand name Periactin) which blocks certain serotonin receptors. It turns out, you can get this drug legally through pharmacies outside the US. I've already placed my order and it's supposed to be here in about five days.

Ideally, I don't want to just perform experiments on myself. I want a doctor to supervise and be there to take care of me should things go wrong. In addition, I want one who has actual experience treating S.S. But I've been calling people left and right and I just can't find a doc who's both experienced and willing. I did manage to score an appointment with a psychopharmacologist who has actually treated S.S., but he may very well look at me and say "No, you don't have it and I'm not giving you Cyproheptadine. Now that'll be two hundred bucks." (He doesn't accept my insurance and I'm planning to pay out of pocket).

I realize no doctor is going to commit to a diagnosis over the phone. But if I walk into the appointment blind, I've got to to risk a lot of time and money on the (apparently small) chance that he or she will go along. I could end up spending six months and thousands of bucks trying to get the okay for a medication I already have sitting on my shelf. I'm stubborn, but I'm not that stubborn.

If the doc in question were pushing a different diagnosis, that would be one thing. I could look at it and decide whether it was more or less likely than S.S. But none of them are going to offer anything I haven't heard before. So it's a choice between trying the cyproheptadine and possibly getting better or trying nothing (or nothing new) and definitely not getting better. I certainly choose the latter. Besides, even if it doesn't help the problem, it could tell me something important.

So question number two is: How do I get a doc to get my back while I try this medication? I'm open to suggestions.

(Don't try to talk me out of the solo treatment. Yes, I'm sure it seems kind of harebrained to some people. But I have an undiagnosable disorder that makes me miserable twenty four hours a day, prevents me from writing, keeps me from dating, and is slowly trashing my body. I require more and stronger meds for the headaches and am worried about my stomach, my liver, and addiction. I can't take much more of this; I've got to do something. My doctors just look at me and shrug, so it's up to me to come up with the ideas and this is the best one I've had so far. I am more than justified in taking this relatively small risk.)
posted by Clay201 to Health & Fitness (15 answers total) 1 user marked this as a favorite
IANYD, but if your doctors literally shrug and blow you off when you offer THEM this treatment plan, and they offer no alternative, even when you're clearly not sounds like they're shitty doctors.

For now, see what the psychopharmacologist says. As for advice beyond that, keep looking, and if you have to, seek out hospitals, doctors, and researchers who've dealt with this. You might have to travel, and it might get expensive, but it looks like, (huge IANYD), this is really, really serious. And even if you don't have S.S., I have to think someone in the medical community can help.

Again, if your doctors blow you off and offer nothing in response, that's on them.
posted by world b free at 1:00 PM on March 10, 2009

Just to clarify, I don't mean to just offer a blanket, "keep trying, sport!" piece of advice. But it looks like, in the wiki article you've referenced, they've experienced this at Cornell and UCLA. Maybe start there.
posted by world b free at 1:02 PM on March 10, 2009

I don't think anyone here can help with an answer to number one, and I'm fairly sure that a doctor's going to want to be involved with any decision to administer meds (question number 2) whether they're on your shelf or not. In short: you need to ask a qualified medical professional.
posted by jquinby at 1:03 PM on March 10, 2009

I'm sure you're at your wit's end, but this is certainly no way to go about things. You say you don't want to experiment on yourself, but that's what you're planning to do. You're asking a doctor to give a potentially harmful drug (all drugs have side effects, you could have a fatal allergy to cyproheptadine) where there is no benefit, since there's no diagnosis. You need to take a step back and re-assess things.
posted by gramcracker at 1:22 PM on March 10, 2009

I understand being at your wits' end without a diagnosis. What sort of doctors have you seen? I'm assuming psychiatrist based on your story and presumably some sort of GP. How about a neurologist? Endocrinologist? Gastroenterologist? Have you ever received any sort of diagnosis for the symptoms that do not seem to be psychological?

There are many, many things that could be causing these problems, and other than your prior use of anti-depressants, there is no real reason to think it is serotonin syndrome. I agree with those who say there's no way a doctor is going to help you take a possibly dangerous drug for a condition it is not clear that you have.

Desperate people with serious undiagnosed conditions who have exhausted all of their local options go to places like the Mayo Clinic. If you have literally seen every local specialist in every conceivable specialty, and been to the closets major teaching hospital to see some of their specialists in those areas, too, then consider something like that.
posted by hydropsyche at 1:40 PM on March 10, 2009

I just checked and you can in fact request an appointment at the Mayo Clinic online. The one in Jacksonville, FL is a pretty reasonable drive from AL.

Here is a good starting place for University of Alabama Birmingham specialists.

And, because I don't know where you might be in Alabama, if you're closer to GA, here is a similar site for Emory, which is a really good medical center.

You don't have to go through this alone, trying to google things and treat yourself. There are people who can help you.
posted by hydropsyche at 1:48 PM on March 10, 2009

Ideally, I don't want to just perform experiments on myself.

Except you already have been, all along, Your description of how you take anti-depressants, going on and off and on and off them again, that's nothing like how they're supposed to be taken, will screw up their efficacy, potentially negate their longer term benefits and sounds just plain horrible. Your poor brain.

Now you're diagnosis shopping. Calling doctor after doctor until you find one that will give you the diagnosis you've pre-decided. This is bad. It's also not the way to experiment, I don't go into the lab looking only at results that match my preconceptions, I go in with a well designed experiment ready to see what the evidence tells me. You should be able to let your doctor(s) do the same.

So instead of the shopping you should be finding a good doctor, working with them over time, taking any medication as prescribed, and letting them look at your symptoms and issues as a whole and with an open mind so they can figure it out from what is actually there. I agree that seeing a better specialist or set of specialists makes sense and that the psychopharmacologist you mentioned is possibly a good place to start. You can tell them your ideas about SS but make sure you also give them an objective list of actual symptoms rather than one tailored to your pet theory (think about this carefully because it's so easy to do). Also listen to what they tell you even if it's not what you want to hear. Sure have the attitude that you want this diagnosed and treated no more messing around and tell the doctor that, don't let them brush you off. But there's a line between that and doctor shopping plus taking unprescribed medication which you're way over.
posted by shelleycat at 2:10 PM on March 10, 2009 [4 favorites]

Response by poster: Don't try to talk me out of the solo treatment.

That's a quote from my initial post. Thanks to everyone who has respected the request.
posted by Clay201 at 3:08 PM on March 10, 2009

I would be profoundly cautious about anything that involves taking a drug that blocks serotonin receptors. You were on anti-depressants, meaning, presumably, that you were, at least before if not now, depressed. Not being a neurologist, I cannot say, but it stands to reason that even if you're not hopelessly depressed now, anything that blocks part of your response to serotonin might well lead you back down that road and fast. If you don't heed the past seven comments telling you that you're doing something stupid (and really, you should), at an absolute minimum have someone with you who knows what you're doing and can look out for you. They need to be able to take you to the hospital if something goes horribly wrong, which it could of course, as well as be able to respond to signs of depression before you drag yourself down that hole.

Your psychopharmacologist may well say that you don't have Serotonin Syndrome and he won't prescribe this drug, but that's not the point. The point is that you have a medical problem, would like to not have this problem, and would like to treat it in the best way possible. That's how you need to approach this. Doctors go from symptoms to diagnosis, not the other way around.
posted by zachlipton at 3:09 PM on March 10, 2009

Response by poster: Mayo Clinic... Jacksonville, FL.

Thanks. I didn't know about the one in Jacksonville. I may have to look into that.

...University of Alabama Birmingham specialists.

Yeah, UAB and I have a long but not terribly fruitful relationship. These guys are considered the gold standard in these parts, so it's particularly spirit crushing when you go there and the neurologist looks at your involuntary movements and says apologetically "I don't know."

Emory, which is a really good medical center.

I'm pretty sure it was an Emory shrink who told me S.S. was out of the question. I talked to two hospitals today; UAB and Emory. It was one of the two.

There are people who can help you.

Man, I hope so.
posted by Clay201 at 3:20 PM on March 10, 2009

Yes, this can be done. You need to go to a very shady part of town (usually), and (again, usually) find a 24-hour clinic. You will need to visit quite a few of them to find the right doctor. If you know people who shop for doctors for their pill addiction, ask them for a referral. The doctor will be not very good, and probably skating the line toward having his license revoked, but he has attended medical school, which is more than you can say for most of us here, and most of the wikipedia writers. Lay out your plan, and your cash.

This sounds sarcastic, maybe because I think this is foolish, and maybe because it is foolish. But, if you want a doctor like that, they can be found. Like any profession, there are some doctors who will do anything for a little money. Start with the ones who have an open prescription pad for pill addicts.

If you want to know what I really recommend, you can see the comment I left for a similar question, here.
posted by Houstonian at 3:23 PM on March 10, 2009

I'm not a doctor.

Serotonin syndrome is a potentially fatal and serious acute medical condition and a rare complication of taking serotonergic drugs. It's not in any way a long-term thing and, once the cause of it (i.e. the medications involved) are removed, it usually resolves quickly. This can vary depending on how long the medications causing it take to be metabolised. Since you're not taking any serotonergic medications, you cannot have serotonin syndrome.

No doctor willing to prescribe you inappropriate medications for a condition that you in no way fit is someone you should trust to monitor your treatment.

Presumably at some point you were diagnosed with depression. The symptoms you describe and your focus on these medical issues could well be due to that. If your disorder is undiagnosable, you should consider the possibility that it's cause is not physical in nature. Screwing around with your medications hasn't helped you in the past - there's no reason to assume that it's going to do you any good now. Rather than continuing to do this, you need to see a psychiatrist and have them assess you.
posted by xchmp at 4:31 PM on March 10, 2009 [1 favorite]

So S.S. sounds like a pretty good fit, right?

Umm no. NOT right.

If you have not taken any serotonergic medications (most antidepressants) or other serotonin stimulating agents (including but not limited toL L-tryptophan, stimulants including Ecstacy, lithium, fentanyl, migraine drugs, dextromethorphan, St. John's Wort) in 3 years and you still have these symptoms, it just ain't serotonin syndrome, no matter how much you want to believe that it is or how much you've convinced yourself that it is by (selectively) reading the internet.

If you like, look up the Hunter criteria for this syndrome which require a variety of symptoms "in the presence of a serotonergic agent." Or look at Sternbach's criteria which require "recent addition or increase in a known serotonergic agent." From a review in the New England Journal of Medicine (2005): "The onset of symptoms is usually rapid, with clinical findings often occurring within minutes after a change in medication or self-poisoning. Approximately 60 percent of patients with the serotonin syndrome present within six hours after initial use of medication, an overdose, or a change in dosing." 75% present within 24 hours of such events. From the Up-to-Date article on the subject: "Symptoms usually resolve within 24 hours of discontinuing the serotonergic agent." Occasionally it might take a few extra days if the causative agent has a longer half-life, but once it's out of your system, that's it.

Basically by definition having this syndrome requires either the concurrent active ingestion of a serotonergic agent or its very recent discontinuation. It is a drug toxicity. Here is a parallel to your reasoning: "I've been losing weight for almost the last year, my pulse is running fast, and last week I had a seizure. I read these are all symptoms of a cocaine overdose. I used cocaine up until quitting 6 months ago, and my doctors told me my reasoning doesn't make sense, but I still think I'm having a cocaine overdose."

Unless you're still exposed to a serotonergic agent without your/our knowledge, consider the possibility that a bevy of trained professionals have blown off this diagnosis for a good reason.

With respect to cyproheptadine, you might want to think about this for a second. Cyproheptadine's purported mechanism in the treatment of serotonin syndrome (a treatment who's efficacy has not been well established in the literature, by the way) is via the antagonism of the 5-HT2a receptor. Pharmacokinetic studies suggest that the drug is a reversible, competitive inhibitor of the receptor with a half life of ~4 hours. That means that its effects if anything are transient. When it's used for this purpose it's not a one time treatment leading to a cure. Patients are given this drug under close monitoring (often in an ICU), essentially to dampen the symptoms of the syndrome while the offending drug is ultimately metabolised and cleared. It's crucial that you understand this. Cyproheptadine is a form of supportive care provided while the patient's liver actually clears the offending drug following discontinuation. It is the latter that actually provides the "cure" to this syndrome, not the cyproheptadine. The cyproheptadine only provides temporary symptomatic relief, and can be quite sedating along with having a number of potentially serious adverse effects.

IAADBNYD and have directly been involved in the intensive care of a handful of patients with serotonin syndrome. The above is all general information easily also found elsewhere and on the internet, and is not intended as specific medical advice. Your symptoms are definitely concerning, and you should not rest until someone (preferably other than you, for obvious reasons) has figured it out. As Osler rightfully noted, "a physician who treats himself has a fool for a patient." Consider how that might apply to a non-physician.
posted by drpynchon at 6:54 PM on March 10, 2009 [11 favorites]

I wanted to say the same as drpynchon. Only time I've ever seen serotonin syndrome has been in an ICU setting. You've clearly done reading online but lack clinical experience.
posted by gramcracker at 5:06 AM on March 11, 2009

If you like, look up the Hunter criteria for this syndrome which require a variety of symptoms "in the presence of a serotonergic agent."

This is more than definitive enough for me, and I think it should be for you, too; by the accepted diagnostic criteria, you clearly don't have Serotonin syndrome.

However, I also think it is possible your endogenous serotonin could be turned up so high that you have developed signs and symptoms which strongly resemble those of Serotonin syndrome. After all, as the link you provide says:

Serotonin syndrome is not an idiosyncratic drug reaction; it is a predictable consequence of excess serotonergic activity at central nervous system (CNS) and peripheral serotonin receptors.[1]

I see no reason "excess serotonergic activity" could not come from the internal sources with which your body is liberally endowed as well as external sources.

And I think there is some indication from your question that you may have a lot of serotonergic activity going on:

During and prior to this period, I was on and off anti-depressants pretty frequently. If I took more than a tiny amount, they made me wired, talkative and fidgety.

A tiny dose was enough to push you into a zone of undesirable side effects.

BUT, I still don't think your plan is a good one. Whenever a disease is being treated, it's important to make a distinction between something your system is doing to help cope with an underlying problem and the underlying problem itself. If you suppress the coping mechanism without doing anything about the underlying problem, the results can be serious, as the cases of the children who developed Reye's syndrome after taking aspirin, for example, could be said to show.

It looks as if you've already run into this in your experience with the Flexeril you got from one of your relatives. When you took it, the electric tension you felt and your muscle spasms abated, but only at the cost of worsening your involuntary movements "permanently." I think this means the muscle tension and the electric restlessness were protecting you from developing the involuntary movement problems.

And I also think the high levels of endogenous serotonergic activity I am imputing to you are likely to be a coping mechanism, and that you mess with those only at your peril unless you can first, or simultaneously, address the underlying problem, which remains mysterious.

As to the underlying problem, if I am reading you correctly, you develop this electric tension (and the involuntary movements worsen?) mainly shortly after you lie down. I believe that could imply a kind of mechanical problem with the brain, since blood pressure and CSF pressure in the brain surge immediately after you lie down, and involuntary movements often bespeak problems in the brain stem, which it seems to me could be pressed down toward the base of the skull and the opening for the spinal cord by sudden and uncompensated increases in brain blood pressure and brain CSF pressure. Or there could be tension on cranial nerves from pressure-driven mechanical issues with the brain.
posted by jamjam at 12:06 PM on March 11, 2009

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