Adverse Reaction to Sumatriptans??

[Kprice]

I'm a chronic sufferer & I've taken Sumatriptans for almost 10 years now. I've been taking verapamil for a couple years now, currently at 120mg 3x a day.

There was a time, a few years back, where I'd used a sumatriptan injection & had a pretty bad reaction to it. I swore I had to have hit a vein or something cause I'd never had a reaction that severe, so I dismissed it.

However, about a year ago, I'd woke up (after a night of drinking) with a strong shadow. I took a 25mg tablet & proceeded to work. 2 or 3 hours later, it was becoming unbearable so I took a nasal spray. I'd told my coworkers I was gonna go lay in my car while I fought it off. Not long after, I'd texted my coworker & asked her to come outside. My chest, back, mouth - all felt WEIRD/numb (for lack of a better word). I was hyperventilating. I could barely stand or walk & I couldn't talk right (assuming bc my mouth felt numb). My feet & my hands were all stiffened in an awkward angle. We both thought I was having a stroke. Seriously. She took me to a medstop, & once I'd managed to get in, the dr saw my condition & sent me to the ER. I ended up puking on the way there & felt like bambi trying to walk in. But by the time I was seen, most of my symptoms had subsided. They still ran some tests & an EKG, some things came back a little off but nothing too alarming cause I was sent home. 

Anyways, I've had this (all the symptoms as described above) happen a handful of times since then & was wondering has anyone experienced the same thing. The first time my husband witnessed it, he also thought I was having a stroke & wanted to take me to the ER. I just give it time to pass & it does, eventually. It's also worth noting, I've taken sumatriptan on many occasions since then where I didn't have these severe reactions.

I've always said sumatriptans were a Godsend cause idk what I'd do without them, but they have always made me nauseous. My full-blown clusters last ~3 hours. Shadows can last for hours leading up to them. Usually, I'll take a tablet when I have a shadow. If it doesn't subside, I'll move on to a nasal spray. If it gets to the point of being full-blown, I'll use an injection & -to date- they've always worked. The injections, more often than not, make me puke but they work. 

Also, I did inform my Neuro of this. He sympathizes with me, hence the prescription for all 3 forms of Sumatriptan but he has a total of 3 cluster patients & he's pretty young so not very experienced on the topic. He sort of brushed it off & said it sounded like a type of dystonic reaction but he couldn't say for sure without seeing it. 

Anyways, like I'd said, just wondering if anyone out there had experienced anything similar. I thank you for taking the time to read this & hope you're pain free <3

[Dallas Denny]

Welcome to the community @Kprice, sorry you needed to join us!

I've been around these online cluster support communities for 15+ years and I can't recall ever seeing the symptoms you've described!

There has been evidence of triptans causing rebound headaches and many folks subscribe to the school of thought that the can extend cycles.

Since you're new here I would urge you to look into the vitamin D3 anti inflammatory regimen in our clusterbusters files section!  It works very well for many folks and should lessen the number and severity of individual hits at the very least!

Dallas Denny 

[Maryo52]

I once had a side effect to tramadol -- my heart rate dropped into the 30s -- and at some later point, a doctor blew this off as impossible. But I looked it up and bradycardia was listed as a "rare side effect." Your reaction is your reaction, and it's a message saying that it's probably a good idea to explore other options, such as the Vitamin D anti-inflammatory regimen (which by the way gave me, a chronic, five and a half years of total peace). There's also a new drug, Emgality. Even without the bad reaction, triptans are not great for our bodies. I noticed that I had more and more palpitations and gave them up for that reason. 

Whoever prescribes your sumatriptan needs to know about your reaction.  

[jon019]

Hi K...welcome...

...agreeing with Denny....these dramatic symptoms are  highly unusual. LOTSA folks have unpleasant/alarming reactions to the hammer that is suma (esp the dang 6mg stat)... but that is typically much more transitory. talk to your pharmacist...make sure they have time to listen/digest even if that means an appointment. those behind the counter are frequently overwhelmed. i'd try to find one connected with a health org or a large corporation....those have specialized pharms in supervisory positions they can refer you to..... or consult themselves.  good luck...keep poking around....this sounds concerning and well worth pursuing...

 

best

jonathan

[CHfather]

1 hour ago, Kprice said:

I've had this (all the symptoms as described above) happen a handful of times since then

First of all, it doesn't seem that you have oxygen.  That is essential!  First priority.  Get started on the D3 regimen also, but oxygen is essential. It will stop your attacks and it will reduce your intake of triptans.  Too many triptans create big headache problems of their own (medication overuse).

Do the bad symptoms you describe always happen with the spray?  Ever with the tablet??  It sounds like you're saying that you typically have enough warning (even "several hours") before an attack that you can go through your progression of tablet/spray/injection.  Am I reading that right?  And are you also saying that you can sometimes/often lay down as you deal with an attack?  And I think you are saying that an injection will stop an attack, but not always since sometimes they go on for three hours or more.

There are a lot of seemingly unusual situations here.  I wonder how much triptan you are taking in (the nasal spray is usually zolmitriptan, not sumatriptan). One thing you can/should do is get less than 6mg with your injections.  One way to do that is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/.  Another way is to get a prescription for vials and syringes so you can measure your own doses.  For most people, 2mg is enough; practically no one needs more than 3.

1 hour ago, Kprice said:

Also, I did inform my Neuro of this. He sympathizes with me, hence the prescription for all 3 forms of Sumatriptan but he has a total of 3 cluster patients & he's pretty young so not very experienced on the topic. He sort of brushed it off & said it sounded like a type of dystonic reaction but he couldn't say for sure without seeing it. 

Many of us here have had physicians brush off symptoms that they don't understand.  What you are describing seems serious enough to me that a second opinion seems important.  Do you have access to a headache center?  They will have seen practically any kind of triptan reaction, I would think, since triptans are prescribed for many "headache" conditions. 

 

[Bejeeber]

 

Hi @Kprice, FWIW it looks like maybe some similar sumatriptan side effects are listed at mayoclinic:

Less common

1. changes in patterns and rhythms of speech
2. confusion
3. dizziness
4. fast, slow, irregular, pounding, or racing heartbeat or pulse
5. trouble breathing

Rare

1. lightheadedness, dizziness, or fainting
2. severe numbness, especially on one side of the face or body
3. trouble speaking or swallowing
4. twitching
5. weakness of the arms and legs

And as @Dallas Denny mentioned, you may wanna revisit preventatives for consideration of something more consistently effective. For many of us that includes busting, as seen at the "New Users - Read Here First" blue bar above^^^^^^ 

[Shaun brearley]

If you can get off the triptans get some o2 if you haven't already and really look in to th D3 regime its help so many people with CH . I know it's easier said than done with the samitriptan . I was the same it was the only thing I had prescribe by my neurologist.  It took the pain away within 5 to 10 mins so I thought it was a God send but when I look back all it did was made my cycles more intense and prolonged the cycle 

[Kprice]

This thing is adamant about not allowing me to respond

[Kprice]

Lol of course that one goes through..

[Kprice]

Thanks for the responses everyone! I'm thankful (& hopeful) seeing so many finding some relief!

Those side effects definitely seem familiar @Bejeeber. I did get my hands on some mushrooms a couple times. However, I didn't have the experience every one around me had. Maybe a mild euphoria but I did feel an unusual tightness in my jaw that I also get with sumatriptans. My best guess is I didn't wait long enough after taking sumatriptan. Haven't been able to find any more since then. 

[Kprice]

@CHfather, my neuro did write a script for O2 but there were insurance hurdles that I guess they'd never followed through with. It probably is time to seek another doctor instead of pushing it off. I feel like I manage way better than I used to so I've more or less just accepted my current treatments.

I don't think I've experienced those reactions with just the tablets. The most recent time was after 2 nasal sprays - taken probably 2 hours apart. The injections DO always work. There have been many times I've not had any though & I usually try to give the other methods time to work before using the injection. My most recent script I picked up were the vials - idk why, but they kinda freak me out worse than the autoinjectors lol. But I'm also trying to use up my oldest meds before getting into those.

[Kprice]

My clusters have seemingly evolved over the years. Like others, I was sure I was dying or had a brain tumor when they first started. Not knowing the first thing about cluster headaches. They started when I was about 16 or 17 years old, waking me at 3AM. Quickly peaking & lasting 3 hours at a horrid intensity. Idk if it's the meds over the years or what, but for the most part now, I'll wake with a shadow. & depending on the intensity of the shadow I'll either take a tablet or nasal spray. Since I only get 6 nasal sprays a month, I usually opt for the tablet first. It seems like there's some sort of intensity threshold there that determines the effectiveness of tablet vs nasal spray vs injection. 

I RARELY, if ever, have any nasal sprays left before it's time to refill. I MAY have a tablet or 2 left during a good month. I get 50mg tablets but usually try 1/2 first cause the nausea isn't so bad with just 1/2. & I hardly ever use all 4 of my injections I get a month. I'm sure that's still a pretty good bit of sumatriptan to be taking in though. Oh, & the nasal sprays are 20mg sumatriptan. 

I had looked into the d3 regimen years ago when I first found cluster busters. & I did request to have my vitamin d levels checked at my next dr apt. I believe it came back at 26ng/mL, which I've read that some consider low. I'll look into the d3 regimen on here further & hopefully get started on it soon. 

Sorry for the lengthy post guys. I've also been diagnosed with Idiopathic Hypersomnia (although, they didn't completely rule out Narcolepsy) in recent years. Dr wants to put me on Xywav, but I have concerns considering the reactions I've had to sumatriptan. I did read about a small study on 4 cluster patients who were treated with Xyrem that showed promising results. Just a tad weary of putting something else in my body. 

Thanks again yall! 

[Kprice]

For whatever reason, it didn't like this paragraph: 

[Bejeeber]

Good info in that follow up, @Kprice, thank you.

My take at this point is that if you're going to continue to use triptans, there is a semi-hidden opportunity to get better results while significantly reducing risk of the bad side effects. It is there in THIS EXTENDING YOUR IMITREX LINK that the venerable @CHfather had also supplied. Reasons:

• Yep, you'll be greatly extending your supply, with much less risk of running out at end of month
• You should still get very reliable results with the 2mg doses. I found that pretty much impossible to believe at first, so I went with 3mg, but when I finally tried 2mg, even with very old imitrex, wow, it worked.
• In my experience injections with plain old syringe are surprisingly way less flinch and cringe inducing than the auto injector! Once you get the muster up to do the first one, you realize "oh this is nuthin".
• Of course 2 mg injections should present way less side effect risk than 6 mg, right?

Syringe pro tip for abdominal area injections: pinch an inch of belly fat if ya got it, skin if you don't, and inject there. Most often it is practically painless.

All this said, I would still advocate for use of O2 first whenever possible, triptan to only be considered as emergency back up, and I applaud your resolve to pursue the O2 again.

 

[jon019]

5 hours ago, Kprice said:

@CHfather, my neuro did write a script for O2 but there were insurance hurdles that I guess they'd never followed through with. It probably is time to seek another doctor instead of pushing it off. I feel like I manage way better than I used to so I've more or less just accepted my current treatments.

....a) oxygen can have such dramatic and positive effects for CH treatment that you really should go all out to get it....which may include some shoving of the civilians who just don't get the URGENCY CH hits cause. quick, easy once dialed in, nunna the nasty side effects of some of the meds we use...life changer for some of us.

....b) i TOTALLY get wanting to stick to the hard earned strategies that one uses to deal.....been there, done that. but, there just might be another way that works, might even be better......and it's always nice to have alternatives.  clusterheads sharing about beast wrangling is why we're here.....that and a cool family that happen to understand and care...

5 hours ago, Kprice said:

My most recent script I picked up were the vials - idk why, but they kinda freak me out worse than the autoinjectors lol. But I'm also trying to use up my oldest meds before getting into those.

.....there are countless clusterheads who would be doing a happy dance for access to the vials. BIG score!  Nothing to add to @Bejeeber  concise and vital primer. above...agree with everything he said! Note from experience re self injecting. The only ooky part is the first time or 2....after that it's no big deal no more....

PS....26 D reading is NOTHING. the lowest level i've ever heard of lowering CH hits is in the 60's....i believe batch @xxx would say 80's or even higher. ...hope he comes along to comment. benefits beyond CH for your overall health too.....

Edited November 10, 2021 by jon019

[CHfather]

Agree with Jeebs on all counts (except insofar as those counts apply to me), and with Jon'.  

Just a reminder that welding oxygen can be used as the basis for an easy to set up, cost-effective O2 system. Lots of people with CH do it that way. You've already been exhorted about the difference O2 can make.

5 hours ago, Kprice said:

Dr wants to put me on Xywav, but I have concerns considering the reactions I've had to sumatriptan. I did read about a small study on 4 cluster patients who were treated with Xyrem that showed promising results. Just a tad weary of putting something else in my body. 

Don't blame you for your misgivings about more meds.  For those who don't know the brand names, Xyrem is sodium oxybate and Xyway is a low-sodium version of Xyrem.  The study that Kprice mentions, on four folks with chronic CH, showed results that were pretty amazing -- 90 percent reduction in attacks for three of them, over an extended period, I think.  There was a person here, with chronic CH, whose attacks stopped for quite a few months after taking Xyrem, but then started again.  Maybe there's more about sodium oxybate over at clusterheadaches.com.