Recognizing Mild and Severe Cases of Serotonin Syndrome

Pink cloudy background with text “serotonin syndrome and migraine”

When you live with one or more chronic condition, its common to create treatment plans utilizing a variety of medications that will all work together to maximize your quality of life.

I connected with my new headache specialist this past Spring and despite personally having run through many options for managing my migraines, with new medications on the horizons and new people managing my care, new opportunities for combination treatments were presented to me for the first time in ages.

Because of a host of medication side effects, I wanted to wait a good bit before introducing my doctor’s first choice for me: Effexor.

Throughout most of winter and spring I worked closely with my primary care doctor to get my blood pressure and heart rate to a normal place all of the time – an unexpected side effect from my arthritis medication. This took until early summer to consistently have readings in the normal range so throughout this time any medications, like Effexor, were put on hold if they had a risk of heart palpitations.

Further pushing things back were complications I found out to be Lyme disease; an update on my summer with Lyme will be coming soon. But getting that under control also took priority over expanding the medications I used for migraine.

But on September 15th, it was time to add a new therapy to my migraine toolbox.

We chose Effexor for a few reasons. My headache specialist seems to give preferential treatment to both Effexor and Cymbalta. I believe in his practice he’s noticed more benefit with the SNRI class of antidepressants aiding in the reduction of migraine days per month compared to TCAs (a class of antidepressants including amitriptyline and nortriptyline which I’ve previously used in combination with my migraine therapies.) He allowed me to choose which of the options I preferred and after reading the side effect profile and additional benefits, Effexor seemed to match up best with my needs.

For example, in working with my dermatologist to manage my psoriasis patches, my biggest barrier is my compulsive picking at the scabs preventing any treatment from working. Technically this is a type of anxiety disorder, which a medication like Effexor could prove beneficial for.

I spoke extensively with my headache doctor prior to starting about Serotonin Syndrome and what my risks may be in starting this medication. What to watch for. If it was safe for me to make the choice to discontinue the medication. Reaching out to local urgent care (as my headache doc is hours away) depending on symptoms. And so on.

I don’t think either of us expected anything, but with my history – especially recently of drug reactions – I wanted to be prepared.

We planned to do a taper up to the therapeutic dose and I was given options to do so slower than normal if that made me more comfortable.

And on Wednesday night, I took my first dose before going to bed. Somewhere in the ballpark of 11:00 PM.

My head was at an indecisive point with the migraine pain. I could sleep it off and feel fine, or I could treat it. I decided to wait on treating and if I awoke later still in pain, then I would treat.

At 3:00 AM I rolled over, the migraine pain no worse, but no better.

I was hot. It felt like my bedsheets may be drenched in sweat. An uncomfortable clamminess had taken over. I got up to go get migraine medication, and I expected to be hit quickly with cold chills that would have been normal with a cold sweat. I wasn’t. This sweat was a different, internal type of discomfort.

The nausea began coming in waves.

I didn’t fall back asleep as I tossed and turned. I could feel my heart rate slowly climbing up higher than normal. Strange sensations took over my abdominal cavity, almost gas like.

By 7:00 AM I recognized an urgent need to defecate. Sitting up, still drenched in sweat, I was hit with the beginning of a vasovagal response. I immediately became dizzy and lightheaded. Since this is something I’ve come to be familiar with over the years, I went straight to the fridge to get a gatorade before going to the bathroom. I think this helped prevent it from escalating beyond that initial dizziness.

I went back to bed.

Getting up around 9:00 AM, I was exhausted.

My body’s temperature regulation was all over the place. The lingering migraine hung over me like a dark cloud. The nausea continued in waves. Cognitively, I wasn’t fully there. By this point, I already knew what I’d been experiencing throughout the night.

Serotonin Syndrome.

And thankfully, a very mild version at that. I knew, because the same symptoms, albeit much worse, had plagued me the previous December. And this reaction confirmed what the doctors then could not.

I called the nursing line locally to try and get information as to what I should be doing at home to minimize any additional symptoms. Of course, the lines were very busy.

As I waited, I began to have a funky vision change. After further inspection I realized my eyes were just dilated rather weirdly.

Before anyone got back to me, I’d managed to eat breakfast and most of my symptoms passed.

I’m glad it was so mild, but in following up with my headache specialist he mentioned that since it had happened to me before, I was almost in a way pre-disposed to experiencing Serotonin Syndrome again. I don’t know why this had never been mentioned before in our “prep” conversations.

Although this was mild, it wasn’t the first time, and looking back I want to share my more severe experience with this same serotonin toxicity.

In the midst of December as my team of doctor’s was working to manage my arthritis – still very unaware my new IBS flare was because of that medication – we began me on Amitriptyline to slow the rate of my digestion and in turn manage the IBS. I was familiar with this medication as it was the first ever medication they gave me years before to treat my migraines. Because of this, I viewed it as a very safe medication and didn’t give much thought to any side effects, only the hope that hey maybe it’ll help the IBS and give me a double bonus and reduce my migraines a bit more too.

It was on the second day that things got weird.

I had been battling horrible nausea in the mornings for at least a month, in part from medications and in part from the IBS, so I had shifted to blander foods. I was trying to distinguish the times where I was having morning nausea versus nausea from being hungry, so oftentimes as my nausea would go up I’d attempt to start making lunch hoping it would clear as I began eating.

I made a chicken sausage and kale soup and was reheating the leftovers. I’d munched on some salty crispix mix as it heated, hoping to tide myself over until I could begin eating the soup. I sat down, warm soup in front of me, trying not to gag. At some point, I took my nausea medicine (zofran) hoping that too would kick in and allow me to get food into my stomach.

As I began eating, the nausea didn’t go away. Rather, I began getting tunnel vision. A sinking feeling came over my skull, like a deep exhaustion or fatigue wishing to knock me over and sleep for years. A dizziness came with it.

In all of the days since this nausea began, this was a first. I felt as if I would pass out at any moment.

I called my mom on the phone to come downstairs immediately, fearing I would shortly lose consciousness.

This was really bad timing as I had to eat my lunch and hop on my telehealth follow up visit with my Rheumatologist. But suddenly I could barely see, I was losing my ability to speak mostly trying to manage the nausea.

They would be calling any minute.

My mom helped me move from my kitchen chair to my papasan chair a few feet away. The intense fatigue getting worse by the minute. As I got into the chair, I began to shake. The kind of deep shake you get when you’re coming down with the flu or have been vomiting for days and your whole body is exhausted. The chills and tremors rumbled through my body.

I began to get cold. That clammy kind of cold. Again, not like the cold sweat kind of cold.

They called. My mother had to answer. We requested to be immediately transferred to a nurse because of whatever was happening.

As we waited we tried to talk out what might be happening.

I knew two days ago I’d started the Amitriptyline. My mom read through the print-off it came with, notating exactly which side effects she could see me experiencing. The nursing line advised we come in to urgent care, a terrifying prospect at the height of the pandemic.

It began to pass.

I was able to move through the disorientation and quick pee, grab a granola bar, and get shoes to get to urgent care. I grabbed a gatorade on the way out, perhaps my dad’s suggestion.

Getting to the car was hard, walking through the brisk cold caused an uptick of those full body chills to shoot through my body.

I sipped the gatorade and waited for the heated seat to warm me.

My symptoms were gone before getting to urgent care.

They brought me in anyway. My blood pressure was 154/97, heartrate hanging out at 139 bpm.

The doctor got my information and I explained to the best of my ability what all I’d been through in the last two hours. In her opinion, I’d just experienced a migraine. I’d had one that morning so surely that was the only explanation for the additional symptoms.

I asked her about POTS – something I’d self diagnosed with for almost 6 months since my symptoms were consistent – and if she thought this may be related. It had seemed to clear up rather consistently with my intake of the gatorade, and increasing electrolytes was a known treatment. She didn’t think it was relevant and stuck with the migraine theory. (I have since been more formally dx with POTS.)

We discontinued the Amitriptyline until I could touch base with my doctor.

Two days later, we all collectively decided it was a migraine and that my vitals were likely related to the fear of being at urgent care and the stressful event I was coming in for. We resumed the Amitriptyline.

This had been a serious case of Serotonin Syndrome (with obvious increased risk factors that I’ll touch on later) that was not recognized and brushed aside because I was taking such a low dose of the medication it was highly unlikely.

Over the next month I would occasionally experience those shakes again. I began to associate them with being cold, because my temperature would plummet each time, my hands often feeling like you’d expect a body at the morgue to feel. I would wrap myself up in my electric blanket, drink some gatorade and soon they would subside. Surely if I tracked the days I took my nausea medicine with the days I would have mild tremors they would overlap perfectly.

During this time, my heart rate was very high. My blood pressure was also very high. I had days where I was exhausted by two flights of stairs to do my laundry.

I was tracking these as evidence for when I finally connected with my Rheumatologist for a whole host of symptoms my arthritis medicine was causing for reason to discontinue and perhaps flush my system of the drugs. Looking back now, I’m not certain these two symptoms were completely related to my arthritis meds.

Two days after discontinuing them, on another brittle cold day in the middle of January, the long term effects of remaining on a drug that induced Serotonin Syndrome came to a frightening, life threatening climax.

One moment, I was doing my makeup the next I was recognizing a swift onset of exhaustion. Mixed up with a clear spike in my heart rate and some impending nausea.

I thought I was quickly coming down with a migraine and the standing for so long to do my makeup surely caused me to be lightheaded. I quickly moved to my couch, with the lights out and laid down.

My heart was racing.

After a bit, I got up to get my pulse oximeter to check. I’d been lying down for at least 10 minutes and my heart rate was telling me I’d just run laps. The nausea worsened. A horrifying headache arrived, stabbing down into my brain, rendering me very close to unable to speak.

I tried to explain to my mom that something was very wrong. But she was headed to the grocery store. Thirty minutes went by, my heart rate never dipping under 130.

We were expecting some handymen to arrive to work on my heat. I couldn’t stay in my dark room as they needed to be in there working. I had to force myself upstairs to a chair in my mother’s bedroom where I would sit, sliding in and out of consciousness for another hour or so.

I began to get more nauseas as my lunchtime came and went. I connected with my doctor who made it clear I needed to get to their office as soon as possible. I was able to eat maybe a small portion of eggs before we got me off to the doctor.

I thought I was going to die.

They did bloodwork and they sent me to cardiology for tests.

It took hours.

By the time it was time to go home, the head pain was taking over and my symptoms were beginning to subside.

They had no idea what was wrong with me.

I was hydrated and all of my tests were normal, my vitals were simply off the charts.

I knew by now that Amitriptyline can cause heart palpitations and I said I believed that’s what this was and that I wanted to discontinue the medication. The doctor agreed and began me on a blood pressure medication to start the process of getting my vitals back to normal.

That took an additional six months.

But I do not know if the Amitriptyline caused heart palpitations or if this is a way that untreated Serotonin Syndrome manifests itself.

What had happened in December was not a migraine and I never should have had to go through so many doctors to finally get a conclusive “Yes you are experiencing classic serotonin syndrome” only after experiencing it in a much more milder form on a second drug.

My first incident in December I believe is clearly tied to my nausea medication, a commonly used anti-nausea medicine Zofran, which is listed on every single “do not mix” list with antidepressants.

Anecdotally, people on anti-seizure medication may also be at an increased risk of experiencing serotonin syndrome. I take Keppra daily to manage my migraines.

Mixing triptans with drugs that increase serotonin levels also puts you at risk for experiencing serotonin syndrome. Mixing tramadol can put you at an increased risk.

This is not comprehensive at all – This US Pharmacist Breakdown seems to be the most comprehensive list I’ve located regarding other medications/herbal things that can increase risk or aid in inducing Serotonin Syndrome.

I knew my risks in trying Effexor, even if we skipped over the part that once you do experience it you’re likely to experience it again, I was aware and able to be mindful.

I knew to notify my dad that I would be starting the medication in case I did have a severe reaction requiring hospitalization.

I vividly remember a few other migraine people mentioning that what I’d gone through sounded like Serotonin Syndrome, but to this day, only my new headache specialist sees it for what it is.

Urgent care said it was a migraine.

My primary care doctor said it was impossible because I was on such a low dose.

I don’t want to bombard a pharmacist to get their opinion, but perhaps I would advise you to call your pharmacist and go over your existing meds if you’re prescribed a serotonin increasing drug.

I personally use a multitude of pharmacies and the anti-depressant in both cases were prescribed at a different pharmacy than my anti-seizure medication and my anti-nausea medication meaning I would have to verbally share all of my medications before they would be flagged.

Using the drugs.com checker:

interaction checker between amitriptyline and onadestron (zofran) comes up with a red major interaction

Checking my anti-seizure drug with amitriptyline yields a “moderate” interaction that mentions an increase of side effects, but doesn’t specifically mention serotonin syndrome as zofran does. The Effexor interactions yield the same thing.

I want to mention that you shouldn’t use the WebMD checker, it does not say these drugs have interactions so I do not trust it’s effectiveness for evaluating any interacitons.

What I find most interesting in the interaction checker between the anti-depressant and the anti-seizure med is that it lists possible side effects all of which check off every box of serotonin syndrome without specifically mentioning serotonin syndrome.

My point in bringing up the interaction checker is that we as patients likely have to do this ourselves just to be safe. My doctors who prescribed the initial Amitriptyline no doubt had an entire list of all of my medications – I know because it takes about 10 minutes to list them all off at the beginning of the appointment and my nausea medicine is always there. Meaning that if a warning popped up on the doctor’s end it was either ignored or it never came.

I don’t have nausea medicine for fun.

And if you have migraine or other chronic conditions, you likely also consume medications either as needed or daily that may increase your risk for Serotonin Syndrome.

Most information online isn’t all that useful. It doesn’t say how these symptoms feel and it doesn’t say what you can do other than go to an urgent care or discontinue the offending medication.

From my perspective, I can tell you to increase fluid intake, get electrolytes into your system, try and balance your temperature (heat if you’re freezing, ice packs if you’re sweating) and call your doctor. If it is severe urgent care can aid in increasing fluids and provide medications that help reduce your serotonin levels.

I’m really lucky this second incident with Serotonin Syndrome was mild. My headache specialist got me in day of just so he could get a good look at me and decide if he needed to send me off to the hospital.

Going forward, we aren’t sure what’s next for migraine treatments but we do know that antidepressants are off the table for me, for good.

A.

2 thoughts on “Recognizing Mild and Severe Cases of Serotonin Syndrome

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