frohfroh: triptans - my lifesaver and nightmare

[frohfroh]

I started suffering from migraines in my early twenties, there was a new drug out called Imitrex. It was so new that my doctor had samples from the drug companies to give out to migraine sufferers. I took a box of samples home with me and set them on the counter not intending to use them ever. When my next migraine hit, I suffered for 2 days and then remembered the drug sample she had given me to try. I was so desperate for pain relief, I didn't hesitate to pop it right into my mouth and hope for the best. It was a miracle, within 20 minutes, my migraine was history. Gone were the days of suffering for 3+ days and wanting to die from the migraine pain. From then on, I continued to take triptans for the next 20 years. In the beginning, I was only allowed 9 tablets a month, they came in 50 and 100 mg tablets. I always had more then 9 migraines per month. My doctor and I devised a plan to get around the limit of 9 per month by him prescribing me two different brands of triptans (sumatriptan, rizatriptan, naratriptan) and also giving me the 100 mg and sometimes cutting them in half to extend my prescription. Little did I know that the limit of 9 is to protect your brain. I was taking up to 20-25 doses of triptan every 30 days. Triptans stimulate the serotonin receptors in your brain and this restricts blood vessels and aborts the migraine. I know they are not an antidepressant but they affect serotonin mechanisms in the brain as do antidepressants and if you have been taking them routinely for years, they should never be stopped suddenly. I wish I had know this when I first started this drug.

 

My nightmare started in June 2020. I noticed that I was feeling fatigue that was so bad, I was having trouble walking upstairs and then the panic attacks hit. I had never had a panic attack. We thought I was having a stroke or heart attack. My hands went numb, I got severe dizziness, I couldn't stand up, I was hyperventilating and shaking. It was like an out of body experience. I literally thought I was dying. I had 10 panic attacks in the next 20 days. We called 911 the first 5 times. Next symptom was insomnia, then the vivid nightmares. I could not sleep for more than 30 minutes and sometimes I wouldn't sleep at all. I would sit in bed and my mind would not turn off. I had extreme fear like I had never experienced. When I would sleep, I would wake up and feel like my arms weren't on my body. I also would wake up feeling like I was going to stop breathing and would wake my husband up and he would stay up and watch me breathe to reassure me. During this time I also wet the bed a few times and would also experience vibrations in my body and electricity type jolts that would pulse out into my arms and legs and wake me up. I made my husband sleep on the floor by the door for a few weeks and placed items around my bed because I had a fear of sleepwalking. During the day, I could not have the TV or any music playing and I would fall apart if the phone rang. I was also having trouble with severe brain fog. I developed a tremor in my dominant right hand and my arms were numb and tingling all the way to my fingers. I though that I was going crazy. I could not figure out what was going on. One afternoon, I was lying down trying to take a nap from the exhaustion and fatigue and i dawned on me that I had not had a migraine in almost 3 months and that I hadn't reached for my triptans in a very long time. I immediately got up and did a search on if serotonin withdrawal was possible and found all kinds of posts on discontinuation syndrome. All my symptoms matched.

 

I was faced with the decision of whether to begin taking a small amount again (even though my headaches had ceased) to try and stop the symptoms or keep going without it. I chose to keep going without it and things got worse. I developed weakness and numbness in my arms, neck, chest and lower part of my face. I also developed deep depression, agitation, detachment from reality, depersonalization, derealization, pain in my wrist joints, pain in my shoulder joints, nausea, heavy limbs, trembling, confusion, appetite loss and throat tightness.

 

My migraines were gone for 4 months, but then they returned. I tried not to take any triptans and even went to the walk in clinic for a 3 day migraine and was given a shot of toradol which did nothing. I went home in tears and that evening I gave in and took a dose of triptan. My migraine was gone in 20 minutes. Since then, my migraines have slowly returned and I have had to take my triptans again. Over the last month, all of my psychological symptoms have ceased but I am left with these physical ones: fatigue, numbness and weakness in arms, tremor and shaking. The weakness and numbness in my arms is the most bothersome. It comes and goes but when it's bad, my fingers get so fumbly that it's hard to brush my hair or teeth. It scares me so much. I have tried to go grocery shopping 3 times in the last month and can only make it about 15 minutes before my legs become like jelly and I have to leave and go home.

 

I have been to a my primary care provider, neurologist, endocrinologist and have an appointment with a rheumatologist. I have had a brain CT Scan, abdominal CT Scan, Brain MRI with and without contrast, EEG, EMG, NCS, TTE, EKG and about 20 tubes of blood drawn all with normal results. I have never been through such torment in my life, I wouldn't wish this on my worst enemy.

 

 

Paxil 1999 - Took for only 2 months - Quit cold turkey

Celexa 1998 - Took for only 1 month - Quit cold turkey

Triptans  20 years - Up to 25 times per month

[Gridley]

Welcome to SA, frohfroh.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.  Please include the date you stopped the Triptan and what dosage you were taking and your current schedule and dosage with Triptan.

 

Account Settings – Create or Edit a signature.

 

When you say, "My nightmare started in June, 2020," was this after you'd stopped taking the Triptan?

 

As you've realized, you are experiencing withdrawal from the Triptans.  Sometimes reinstatement of the drug reduces withdrawal, but sometimes it doesn't.

Your drug is somewhat different from the psychiatric drugs we normally deal with, but the following links on withdrawal and the healing process would be in large part applicable to your situation with a serotonin-affecting drug. The symptoms you describe are typical of withdrawal.  It has been our experience that we all heal, but we can't give a timeline of when that will happen.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that ae single ingredient (not mixed with other types of supplements).

 

This is your Introduction topic, where you can complete your drug signature, questions and connect with other members.  We're glad you found your way here.

 

 

 

[frohfroh]

Hi,

Thanks for the kind words and information. Yes, the nightmare started in June 2020, after discontinuing both triptans.

[ChessieCat]

Hi frohfroh and welcome from me too.

 

You might find this topic helpful, especially the information in Post #1: 

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

To find members who have posted about the same drug you could also try doing a search (general internet search engine) using the following search string:

 

site: survivingantidepressants.org triptan Imitrex sumatriptan rizatriptan naratriptan

 

And you could add the other names that it is known by drug name and brand name.  From https://www.webmd.com/migraines-headaches/qa/what-are-the-seven-triptan-drugs-to-ease-migraines

 

There are seven triptan drugs:

• Almotriptan (Axert)
• Eletriptan (Relpax)
• Frovatriptan (Frova)
• Naratriptan (Amerge)
• Rizatriptan (Maxalt)
• Sumatriptan (Imitrex)
• Zolmitriptan (Zomig)

[ccfb]

I have suffered from a chronic headache disorder for several years.  I have a lot of experience with sumatriptan and rizatriptan, including daily use for quite some time.

 

Triptans are abortives.  They are not meant to be used more than sparingly.  I don't use them anymore because I almost invariably found that they produced an identical headache the next day.  What seemed to help me most with my headaches was a solid primary care doctor, a gluten-free diet (Celiac is often undiagnosed in headache patients), a solid supplement regimen, and daily exercise/meditation.

 

If those symptoms continue, don't assume that it's related to the triptans.  It's conceivable, but you want to rule out other stuff first.  Sorry to hear you're going through this.

[frohfroh]

Hi ChessieCat,

Thanks for the information. I have searched the internet for triptan withdrawal but I was only able to find 2 studies and they were very small. I think that people who take triptans quite often and then stop, probably don't even know they are suffering from serotonin discontinuation syndrome. It was a neurologist who clued me into the fact that they are a serotonin drug. I took them for years before even knowing this. I'm glad I found this site for support.

[frohfroh]

Here are the 2 studies I found that talk about suddenly stopping triptan use. 

 

https://pubmed.ncbi.nlm.nih.gov/23016662/

 

https://www.nyheadache.com/blog/stopping-high-doses-of-triptans-suddenly-can-cause-depression/

[ccfb]

55 minutes ago, frohfroh said:

Here are the 2 studies I found that talk about suddenly stopping triptan use. 

 

https://pubmed.ncbi.nlm.nih.gov/23016662/

 

https://www.nyheadache.com/blog/stopping-high-doses-of-triptans-suddenly-can-cause-depression/

That's interesting. Definitely seems plausible that there could be some lingering effects to daily triptan use. Triptans work as agonists at two 5HT1 receptor subtypes, causing vasoconstriction (narrowing of your blood vessels). 

 

I know that when I took triptans, I always felt tired as a side effect. There was sometimes some weakness or tingling too. 

 

There is a lot of comorbidity between migraine and depression. It's interesting because almost every headache patient takes triptans now. Many people overuse them. I always wondered what the long term effects of that might be. 

 

I'm not a doctor, but from my experience as a patient I would suggest that good headache control should be the top priority if you don't have it already.  It is difficult to stop any med if you are using it to prevent physical pain.  Next would be stopping the triptan overuse and figuring our how to deal with remaining symptoms. 

 

I can't imagine the vasoconstriction of daily triptan use is good for your heart or blood vessels.  And applying the Ashton Manual-style 10% recursive tapers to triptans might be unhealthy. I would consult a doctor.  But if you are told you have depression, be extremely wary of "antidepressants." They can do a lot of harm. 

[ccfb]

I wanted to add one more thing here.  This isn't medical advice, but I thought I would share it because my story sounds a little bit like yours with the daily headaches.  When my headaches were bad, all of my lab numbers were ok too—except LDL-P.  This is an unusual test that isn't part of the typical cholesterol panel.  It reflects the total number of LDL cholesterol "particles" in your blood.  My LDL-P was off the charts—and I'm 31, thin, and active.  It was odd, considering my other cholesterol numbers were ok.  

 

This may or may not be relevant to you, and I'm not remotely qualified to offer medical advice.  I would keep pushing your doctors for an answer because those symptoms aren't good.

[frohfroh]

Weakness and fatigue - did it come later?

 

I was wondering for those of you that had severe weakness and fatigue as a symptom, did it come right away or later on? For the first 3 months, my symptoms were mainly psychological: Depression, Depersonalization, Derealization, Vivid Nightmares, Couldn't be around the TV or radio, Brain Fog, Fear and Intrusive thoughts, etc. They got better but then the physical symptoms got worse and are hanging on. Trembling/Shaking, Weakness in Legs and Arms, Pain in joints, Numbness, etc. It comes and goes and some days, it is better then others. I have had in the last month, 3 days (not in a row) where I felt like I was healed and then the next day was like rug was pulled out from under me. 

 

Edited October 31, 2020 by ChessieCat
added topic title

[ChessieCat]

Drug information:

 

Sumatriptan, sold under the brand name Imitrex among others, is a medication used to treat migraine headaches and cluster headaches.

 

Rizatriptan, sold under the brand name Maxalt among others, is a medication used for the treatment of migraine headaches.

[ChessieCat]

Please be aware that the drugs you are taking are not antidepressants and as such there are only a few members on this site who are familiar with them.

 

(Please see this post re-wording the following paragraph).

Even though reducing your drug too quickly can cause withdrawal symptoms, it is highly unlikely that you can compare the withdrawal symptoms you are experiencing to what members who are getting off antidepressants, benzos and/or antipsychotics experience.

 

If you join FaceBook, support groups and/or forums for migraine / headache sufferers you are more likely to find people taking/stopping the same or similar drugs and with similar experiences to your own.

Edited October 30, 2020 by ChessieCat

[ChessieCat]

There are many existing topics on SA.  Use a search engine and add site:survivingantidepressants.org to the search term.

 

Or you can check out the existing topics in the different forums by going to the forum and looking through the topics that are already there.  Click on the SA icon top left and that will take you to the main page and then click on the different forums to see a list of topics.

[ChessieCat]

7 minutes ago, ChessieCat said:

Even though reducing your drug too quickly can cause withdrawal symptoms, it is highly unlikely that you can compare the withdrawal symptoms you are experiencing to what members who are getting off antidepressants, benzos and/or antipsychotics experience.

 

I'd like to re-word this.

 

Even though you may be experiencing similar withdrawal symptoms because the triptan drugs change the brain chemistry, your drugs are different to what most members here are taking, which makes it is difficult to compare your own situation with other members.

[frohfroh]

Hi,

Triptans are serotonin agonists. They stimulate serotonin in the brain. I took them for 20 years and twice as much as I was supposed to. (Doctor prescribed double the amount) When I stopped abruptly, I had all the symptoms of "Discontinuation Syndrome". They seem to affect the brain in a similar way that an antidepressant does. 

 

Unlike other acute medications, triptans are considered selective serotonin receptor agonists, meaning that triptans work by stimulating serotonin, a neurotransmitter found in the brain, to reduce inflammation and constrict blood vessels, thereby stopping the headache or migraine.Nov 19, 2007

 

Facts About Triptans - National Headache Foundation

Possible association of severe major depression with acute cessation of long-term excessive triptan use:

https://pubmed.ncbi.nlm.nih.gov/23016662/

 

 

 

[ChessieCat]

Yes, I do understand that about triptans.  I researched it after you made your first post.  As you know there seems to be only 3 other members who have experience with triptans.

 

My comment, which I re-worded to make more clear what I meant, was that it is difficult to compare your own experience with triptans to members who are withdrawing for different drugs.  Members who are taking the same drug can have different experiences.

 

What you describe in your post above sounds like window and waves; recovery is not linear.  These might help you to understand the process.

 

Windows and Waves Pattern of Stabilization

 

Brain Remodelling

Video:  Healing From Antidepressants - Patterns of Recovery

What is Happening in Your Brain

 

Dr Joseph Glenmullen's WD Symptoms Checklist

[ChessieCat]

Topic merged with Introduction topic so that history is in one place and information provided is not repeated.

[ChessieCat]

This topic might have some helpful information in it too:

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

[frohfroh]

These links are great, thanks. I will read through them.

Is it possible that there are phases to "Discontinuation Syndrome" that might follow a pattern. (I know everyone's experience will differ some what)

 

I was only able to find one article outside this forum that supports what I am feeling.

 

 https://www.news-medical.net/news/20130321/Alarming-report-on-persistent-side-effects-of-antidepressant-drugs-published-online.aspx#:~:text=SSRI withdrawal%2C like for other,withdrawal%2C depending on the drug

 

Particularly this:

SSRI withdrawal, like for other classes of CNS depressant type (alcohol, benzodiazepine, barbituric, narcotic, antipsychotic, antidepressant), needs to be divided into two phases: the immediate withdrawal phase consisting of new and rebound symptoms, occurring up to 6 weeks after drug withdrawal, depending on the drug elimination half-life, and the postwithdrawal phase, consisting of tardive receptor supersensitivity disorders, occurring after 6 weeks of drug withdrawal.

 

It seems to be saying that maybe some physical symptoms come later for some and last longer. 

 

I hope to find some other people who have experienced what I am feeling. (Physical symptoms lagging on, but the psychological ones mostly gone).

[ChessieCat]

Check out the subtopics in the Are We There Yet topic.

 

what-is-withdrawal-syndrome

 

[ccfb]

23 hours ago, frohfroh said:

Hi,

Triptans are serotonin agonists. They stimulate serotonin in the brain. I took them for 20 years and twice as much as I was supposed to. (Doctor prescribed double the amount) When I stopped abruptly, I had all the symptoms of "Discontinuation Syndrome". They seem to affect the brain in a similar way that an antidepressant does. 

 

Unlike other acute medications, triptans are considered selective serotonin receptor agonists, meaning that triptans work by stimulating serotonin, a neurotransmitter found in the brain, to reduce inflammation and constrict blood vessels, thereby stopping the headache or migraine.Nov 19, 2007

 

 

There are fourteen 5HT (serotonin) receptor subtypes in the brain.  

 

Sumatriptan and Rizatriptan are both agonists at 5HT1B and 5HT1D - 2 of those 14.  An agonist takes the place of the natural ligand and activates the receptor.  You can read about the other serotonin receptor subtypes here.

 

SSRI and SNRI block the 5HT reuptake pump, enhancing the concentration of the natural ligand serotonin ("5HT") in the synaptic cleft, thereby affecting transmission at all 14 autoreceptors.  They have very noticeable and sometimes enduring effects on mood, cognition, memory, sexuality, etc. - and they usually have longer pharmacokinetic profiles (half-lives in the 15-100 hour range).  These medications work by constantly exposing your "serotonin system" to an excess of neurotransmitter.  By contrast, triptans don't work by "stimulating serotonin."  They work by temporarily activating two 5HT receptors (in place of the natural ligand serotonin).  Activation of those receptors causes vasoconstriction, and thereby blocks the pain of migraine.  The half lives of sumatriptan and rizatriptan are 2-3 hours.

 

It is conceivable that excessive triptan use might induce a depressive state after long-term use.  The human body (and especially the brain) is incredibly complex, and it's difficult to discern causation.  But I'm reading the abstract of this article that you linked, and there's a sentence that gives me pause.

 

Quote

Case summary: We report a case of a 49-year-old male patient with first onset of severe major depression following cessation of daily excessive triptan use for 8 years. The depressive disorder was resistant to prior serotonergic antidepressant therapy. Antidepressant treatment with a non-serotonergic agent was successful in resolving depressive symptoms.

 

Was this person on antidepressants before the triptans?  If so, that is a complicating factor to this case study (remember, case study n=1).  We have learned over time that long-term "antidepressant" use can cause a tolerance/withdrawal effect and enduring harm.

 

Personally, I have also "overused" daily triptans for several years (~20-30 times per month).  I have also withdrawn from the SSRI escitalopram, 10mg to 0.  At least in my experience (which may differ from yours), there is absolutely no comparison between the two.  I did have depressive symptoms when reducing the escitalopram, during which time I had also stopped using triptans.  But the symptoms had a very strong correlation with the escitalopram dose changes.  The triptans did not seem to affect the depression (though they did interact with the SSRI).  

 

I would urge caution before adopting what people have learned about antidepressant withdrawal to triptans.  They are a different class of substance.  Trying to keep up daily triptan use because you're worried about depression symptoms based on a single case study does not sound wise.  Triptans can have cardiovascular and cerebrovascular side effects, and they are not meant to be used so frequently.  The medical rule I always heard was maximum twice per week.  

 

Quote

(Physical symptoms lagging on, but the psychological ones mostly gone).

 

Talk to a doctor!