Jump to content
ClusterBusters
Sign in to follow this  
CHfather

Sumatriptan and increased attack frequency

Recommended Posts

This is not "news," really. It's a ten-plus year-old report. But I hadn't seen it or had forgotten about it, and it's relevant to discussions that take place here:

Objectives.—To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature.

Background.—Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial.

Methods.—Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described.

Results.—All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache.

Conclusions.—Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2004.04132.x/abstract

Share this post


Link to post
Share on other sites

Sumatriptan caused me to have 51 attacks in 7 days.  I have stopped taking it and do not plan on taking it again.  It seemed to make the pain worse too.  IÂ’m still having a couple a week.  Somewhat keeping them at bay with verapamil. Physicians will continue to prescribe it because they are making money on it, kickbacks from pharmaceutical companies and dinners at nice restaurants. They do not care about the patience and it is all about the $$.  This goes for profit, not for profit and county health care providers.  All of them make a lot of money!  This is why my neurologist will not prescribe me O2.  I have been asking for it seven years!  IÂ’m getting a welding tank. I worked in healthcare for 7 years at the corporate level at saw this first hand at a not for profit and at a county hospital.

Share this post


Link to post
Share on other sites

While we're on the subject of sumatriptan, I wanted to bring up the fact that we are seeing a number of peeps that have been having cardiology problems with this drug.  It seems that the majority (correct me if I'm wrong) of these cases involve overuse of imitrex. 

At any rate it has become alarming, and I am not the only one to notice this.  I'm sure that THMH will chime in, as he has had first hand experience with this.

I am not trying to demonize sumatriptans in any way, just think we should as a forum be more aware of the risks.   As NightCrawler implies, it is very doubtful that the medical community will be on top of this.

Carry on.........

BB

Share this post


Link to post
Share on other sites

I want to expand on this to help CHrs make a better decision for themselves.  The neurologist that I was seeing is on one of CH specialist list.  He told me that the recommend dose is 2 per day but because clusters are so bad to inject every time I had one.  He prescribed me Sumavel Dosepro 6 mg.  Each injection cost $89.  For 51 attacks that was $4539 in one week.  It did give me cardiology problems for a couple of weeks.  Not sure what the long term effects will be but sure I will have some.  They know what the side effects are and do not care.

Share this post


Link to post
Share on other sites

Imitrex / Sumatriptan is known to cause rebounds.  Sadly a rebound can be just as bad (or worse) than the CH it's supposed to stop. :(

I've been reading some of the recent threads on heart issues, and I'm questioning the root cause of the PVC's (Premature Ventricle Contractions) that the wonderful dr scripted garbage caused my heart to have for about 3 years after stopping those drugs.

When my PVC's started I had just started a course of Verapamil a few weeks before (it wasn't helping reduce my CH like it had the first year I tried it).  I was convinced my PVC's were caused by the Verapamil, but reading some of these recent posts.  I'm now questioning if my PVC's might have been caused by the Imitrex (or combination of the two).  I only rarely used the Imitrex, (maybe 20 auto injector sticks total over 2 cycles / 2 years).  It's possible that my body is / was very sensitive to the terex and alone or either in combination with the Verapamil caused the PVC's.  At this point there's no way to tell which of the two drugs was the major contributor.

Luckily my heart eventually repaired the problem.  The PVC's slowed and eventually disappeared after about 3 years. 

Maybe this thread could help someone that starts having heart issues more quickly identify the root cause drug.

Sorta thinking out loud here:  Maybe make a sticky thread and list side effects of Imitrex and Verapamil to help new people experiencing issues?  If my doctor had told me there was a possibility of having something like a heart attack every day for 3 years, I'd have told him to keep his scripts...

J

Share this post


Link to post
Share on other sites

Here is the another perspective on the pharmaceutical side.  My friend used to be pharmaceutical rep for a major company.  They have quotas to meet.  She would meet with doctors all day long.  Giving them samples, shirts, coffee mugs, ties, and all kinds of other stuff.  She asked me to help her move this stuff because I had a pickup.  I was shocked by all the stuff that they give away doctors.  This stuff was in two large storage units.  She had a large amount of $$ to spend on dining every month.  All $$ had to be used up every month.  She would take the doctors out to very high end restaurants. After receiving all of this on a monthly basis, What do you think the doctors are going to do?  They are going to give out the samples then write scripts for it.  Doctors are just legal drug pushers for the pharmaceutical companies.  The majority of commercials on TV now are for prescription drugs.  Their profit margins are insane!  Endo International is the manufacture of Sumavel DosePro.  Their profits for Q4 2014 were $800 million, up 37%.  This why they only dedicated $2 million in research for clusters. They donÂ’t care about what causes it or finding a cure when they are making billions.

Share this post


Link to post
Share on other sites

High flow O2 is so much better of a route to go for an abortive than imitrex, on so many levels.

BUT, Warning: I'm about to blurt out a controversial (?) statement....

From what I've seen, the word *O2*  can practically be interchanged with the word *Sumatriptan* in the study on increased frequency of attacks, because it can happen with O2 too.

Here's something I've experienced and compared notes with others who have experienced the same:

In high cycle? Being awakened every hour with a re-attack after aborting with O2? If you abort it with imitrex you'll get 3 hours sleep before the next attack instead of just one.

So could I personally recommend imitrex over O2? NO. Quite the opposite. But I think when comparing the two (which is something I realize I'm the only one interjecting into the conversation here so far), the potential serious heart risks from imitrex use I've been hearing more about lately, the toxicity, the expense and the availability are what make O2 the vastly superior choice, not necessarily the rebound issues.

Thank gawsh busting preventatives are working for so many of us, and O2 is safe and non-toxic if needed for an abortive.

Of course everyone's mileage may vary, and as an example of that, Nightcrawler, I hate hearing about your 51 attacks in 7 days when on imitrex, what a nightmare, and extremely bad mileage.  :o

Share this post


Link to post
Share on other sites

Bejeeber- it was the worst bout ever in 17 years of living with this. I would take 2 to 4 attacks a day with no meds as I did for the first 10 years. Rather than going through the imitrex hell.  Once I stopped injecting  and did a detox my attacks reduced dramatically to none to a couple a week.  The heart issues went away after a week. I used PH water at a level of 12 and Natural Calm Plus Calcium. It also helps alleviate lot of side effects caused by prescription meds.

Share this post


Link to post
Share on other sites

I'm hesitant to post this because I know it may scare some folks (possibly unnecessarily) but all in all I think it should be said.  

 

A while back we had 1 person come onto the CH board and claim that Imitrex had messed up his eye sight somehow.  Everyone blew him off as a quack but once I looked into it a bit I became concerned.  When I reread the info that comes with sumatriptan I found that under the section entitled "Animal Toxicology and/or Pharmacology" there was a note about corneal opacities.  It says that they tortured dogs to get us more info on Sumatriptan and that the results of the torture was this--"dogs receiving sumatriptan developed corneal opacities and defects in the corneal epithelium.  Corneal opacities were seen at the lowest dosage tested, 2mg/kg/day and were present one month after treatment."    It goes on to say that the lowest dosage tested was 5 times the normal amount for a human who took a 100 mg pill and 3 times the human exposure after a 6 mg subcutaneous dose.  

 

To me it looks like anyone taking a lot of trex should have their eyes checked for any sort of corneal opacities.  What really sucks about this study is that seeing as how this was happening at the lowest dosage that they tested we can not really be sure that it is not happening with normal human amounts of Sumatriptan.  I've had doctors tell me that Sumatriptan has been used so much that we would know about it by now if it was causing eye problems but that is just plain stupid.  I have serious trouble believing that my general doctor or my eye doctor is going to know enough about sumatriptan to link it together with a vision problem.  Much more likely that they would say "for some unknown reason you have corneal opacities." and call in the next patient.  Anyone out there been taking a lot of trex and experienced vision problems?

 

I would love more info on cardio problems that people have reported.  How many people have we heard from saying they thought Sumatiptan had caused them heart problems?  What type of cardiac events are we talking about?

 

-Ricardo

Share this post


Link to post
Share on other sites

Ricardo we had a member, Fabalicious who joined in 2014. She was taking a lot of trex. She detoxed and got PF. About a month later she stopped coming on the board due to a severe heart condition that had just appeared/been diagnosed. Jeebs or another member spoke to her last I think. She was not allowed on the PC until her condition improved was the report we received from her daughter I believe. We have not heard from her since. It was bad. Not a heart attack evidently.

 

I have often wondered how she is doing now. I suspect that if she were better, she would be back. Miss her posts.

 

Anyway, that is the worst case that I am aware of.

 

Edit to add: Another member had taken two shots of trex and was hit again. His wife took him to the ER. They proceeded to give him two more knowing that he had already taken two in under 12 hours. Idiots abound.

 

spiny

Share this post


Link to post
Share on other sites

Some links I found.

 

35 year old woman with coronary artery disease has a heart attack after first dose of SQ sumatriptan.

http://www.ncbi.nlm.nih.gov/pubmed/7783891

 

56-year-old female patient with migraine who experienced a myocardial infarction shortly after using sumatriptan, despite having had a normal cardiovascular evaluation.

http://www.ncbi.nlm.nih.gov/pubmed/8682677

 

Risk of severe cardiovascular adverse events after the use of a triptan is estimated at 1:100,000 treated attacks

http://www.ncbi.nlm.nih.gov/pubmed/20977405

 

42-year-old man with episodic cluster headache without history of coronary artery disease who was admitted to our coronary care unit for acute myocardial infarction after 3 h of subcutaneous injection of sumatriptan. 

http://www.ncbi.nlm.nih.gov/pubmed/16601942?dopt=Abstract

 

If you keep looking there are more.  Most cases, but not all involve people that already were experiencing some sort of heart condition.  There are also a good amount of people reporting chest pain that turns out to most likely NOT involve any sort of heart problem. (There is something to also be said for the fact that just because you have not been diagnosed with a heart problem, that could still mean that you just have an UNDIAGNOSED heart problem) My take on everything I have read--if you have a pre-existing heart condition I would be pretty wary of taking sumatriptan.  For the rest of us, be on the lookout for dangerous side effects but personally I am not too worried about it.  There are a number of weird cases out there involving sumatriptan possibly having a negative cardiac event but with the unbelievably huge number of people that have at this point taken the drug with no problems, I'm not convinced it's something I should worry about enough to stop taking sumatriptan.  I would however be very wary of mixing sumatriptan with certain meds (like verapamil).  

 

Anybody have any other cardiac info on sumatriptan, whether from research or anecdotal? 

 

-Ricardo

Share this post


Link to post
Share on other sites

I-J, I'm not sure how to reply to this.  By "plant extractions" do you mean psychoactive substances?  If so . . . they can be effective as an abortive during an attack (a cluster headache attacks, at least; I can't say for sure about a migraine), but they're commonly used to prevent future attacks rather than to abort attacks.  I have no idea whether tryptamines would have the same effect on her as triptans.  No real reason I know of to think they would.

Share this post


Link to post
Share on other sites

Well, I know nothing about this myself.  Ricardo is probably the person you'd like to hear from. Here's what a ClusterBusters FAQ says about DMT: "DMT (dimethyl tryptamine) is a very potent hallucinogen found in many plants and animals; it’s even present in the human brain. There are a few reports of its use to treat clusters with good success. But this hallucinogen is powerful. Its effects are so intense, bizarre and outrageous, it’s not recommended as a cluster treatment."  We're more about cluster headaches here than migraines, although there's evidence that tryptamines work on migraines as well as on CH.  Lots can be found on the internet by googling DMT and migraine, generally seeming to conclude that DMT often helps, but sometimes (going directly back to your question) makes it worse.  Unfortunately, for some reason the search engine here at this site won't search for three-letter items.   I suppose if your friend was going to try a tryptamine to abort, maybe she would want to start with a less dramatic one, like LSA or psilocybin.  But I'm just guessing, as I'm sure you can tell.

Share this post


Link to post
Share on other sites

I have a friend that when she took Sumatriptan the migraines intensified. This is synthetic................is it not? Would plant extractions do the same to her or would it work differently as an emergency suppressor?

 

 

What I mean is natural DMT versus the synthetic. She has tried imitrex and Sumatriptan, which just makes it worse. From my understanding Sumatriptan is just DMT with a sulphur molecule.

 

You are correct that Sumatriptan is essentially DMT with a sulfur molecule added on, but they are in essence very different drugs with very different effects.   (water is essentially just hydrogen with 2 oxygen molecules added on, but you will have quite a different experience if you drink a glass of hydrogen compared to a glass of water.)  As far as synthetic vs non-synthetic, you can have synthetic DMT that is made in a laboratory or you can have natural DMT that you have extracted from a plant.  Both are still DMT.  DMT may or may not be helpful for your friends headaches but unfortunately the only way she would be able to know is if she tried it.  

 

-Ricardo

Share this post


Link to post
Share on other sites

Any triptans will make the next attack you have far worse. Guaranteed by the way it works.

Triptans will allow the cycle to continue and get worse. You get short term relief but long term continuation.

After ending ten years of conting pills, I went cold turkey and suffered for two weeks. Then all the attacks amazingly got weaker and weaker. Then I went 15 months without any attacks! Shadows yes, aura yes, but no pain.

Opioids will give you a rebound hangover like headache as well.

Triptans will rock you so bad when they wear off.

All triptans are released from the k receptor at almost the same time, this sets you up for the worst possible pain you can receive in your life. All receptors open at once = full scale pain. You want these receptors blocked by LSD or psilocybin then you get five to seven days of pain free. Then you block the, again. As many times as it takes for your slow body clock t get back on schedule. This will take weeks. Maybe busting 1x a week for five or ten weeks. Whatever it takes for you. Just bust and save your life and quit these meds.

The meds will totally screw up your busting too so you have to quit for a week at least.

Stop triptans now. They will set you up for disaster and continuous headache cycle. You are fooling yourself if you think they are helping. Read revised my lean theory in theory and implantation to learn more about why they are bad.

Share this post


Link to post
Share on other sites

Any triptans will make the next attack you have far worse. Guaranteed by the way it works.

Triptans will allow the cycle to continue and get worse. You get short term relief but long term continuation.

 

 

I disagree.  In my experience triptans will most definitely give me rebounds IF I take it numerous days in a row, but there have been plenty of times (and after close to 20 years of using triptans I can say PLENTY of times pretty confidently) that I have had a cluster, taken sumatriptan and did not have a rebound headache or increase in the severity of attacks.  And yes, more than once I thought the same thing, stopped Sumatriptan for 6 months at a time and found no difference.  Maybe this reaction is happening with you Denny, but I suspect it might be an individual sensitivity to triptans.

 

 

Opioids will give you a rebound hangover like headache as well.

 

 

Again, I disagree.  I fully believe that taking opiates too many days in a row will give you rebounds, but I have had too many times where I ended up in the ER and the only thing that worked was opiates.  The next day I did not get hit, and my attacks in general did not actually get worse in any way.  I think this is important info because I think as a last ditch effort the opiates are very useful.  If you end up in the ER, you are out of options and they offer you a shot of morphine should you turn it down because of the possibility of a rebound headache the next day?  In my experience and opinion, as long as you have not been taking opiates much you will do yourself very little harm with an emergency shot of opiates.

 

 

Triptans will rock you so bad when they wear off.

 

 

I would say that somewhere around 95% of the time that I take sumatriptan it gets rid of the cluster and does not in any way "rock me so bad" when it wears off.  Sometimes the triptan does not work, I consider this to be a bad cluster and not sumatriptan rocking me.

 

All triptans are released from the k receptor at almost the same time, this sets you up for the worst possible pain you can receive in your life. All receptors open at once = full scale pain. You want these receptors blocked by LSD or psilocybin then you get five to seven days of pain free.

 

 

 

Triptans are not really released from any sort of receptor, they do trigger certain receptors to do certain things, but they are not actually released.  The k receptor is a hallucinogenic opiate receptor and I have never heard of it being related to sumatripan or clusters.  Do you have any info showing otherwise?  

 

 

The meds will totally screw up your busting too so you have to quit for a week at least.

 

In my experience this is not always true.  I have taken sumatriptan, then less than 48 hours busted with psilocybin and it worked.  I have done this more times than I can count.  When I get to the point where I am taking sumatriptan for more than 2 or 3 days straight it seems to interfere with my bust and I need to make sure I get a good break from it.

 

 

Guaranteed by the way it works.

Stop triptans now.

They will set you up for disaster and continuous headache cycle.

You are fooling yourself if you think they are helping. 

 

In my opinion, none of these statements are very helpful.  You have your situation and other people have theirs.  You can not guarantee any sort of reaction to anyone about anything.  Telling people "stop triptans now" because they haven't worked well for you seems to assume that you know other peoples situation enough that you can tell them what meds they should just "Stop".  That seems kinda arrogant to me.  You can not say in any sort of surety that "triptans will set you up for disaster and a continuous headache cycle".  Maybe you can say that about yourself, but there are a LOT of people that do not have this effect at all.   It has been pointed out over and over on this site that we should all take as little sumatriptan as possible.  That IS helpful. 

 

As far as "You are fooling yourself if you think they are helping"  Again not very helpful and most definitely arrogant.  You don't usually convince people of the merit of your ideas by calling them foolish.  My bet is that if you do some serious research you are going to find very different ideas than the ones you have come up with.  Maybe I am missing something though. 

 

 

Read revised my lean theory in theory and implantation to learn more about why they are bad.

 

I responded to that post earlier with a whole bunch of questions because I wasn't understanding what you were saying and I have to admit, after you answered me I was even more confused.  Between the k receptors that are somehow receptors and molecules, the clusters being caused by clusters, the strange oxygen info, I could go on and on---it just doesn't seem to have much basis on any sort of factual evidence.  The idea alone of K being a both a molecule and a receptor makes very little sense from what we know of biology, chemistry and science.  Molecules bind to receptors because the molecule fits into the receptor just like a key in a lock. From everything we know, If the molecule and the receptor were the same it just wouldn't work--that would be like trying to fit a lock in a lock, instead of a key in a lock.  I would research more about the receptors that get triggered by sumatripan and the receptors that are triggered by hallucinogens and look for correlations.

 

-Ricardo

Share this post


Link to post
Share on other sites

Guys:

I expound a theory that the ultimate treatment for the headache cycle lies within the pain itself. I have found the Triptans do cause me re-bounds, but only when in high cycle - also found that there is a point in high cycle when I have to go down in my office at home and let 'er rip.   No meds - cold turkey - ice on the head - bang and scream and let the attack run its course.  It seems almost like there is a number of attacks in a cycle that you must endure in the purest form of the pain for the Beast to begin to release its bloody talons. 

However those of you who have let me whine here for the last decade or more know that I keep the injections handy - and I take a healthy dose of Verap. every day all year - I have the big big O2 tank in the hall all year - I have tried a visit to the Portuguese wizard, busting with shrooms, Chinese doctor and herbs - nothing but licorice water for a week, water water water, exercise rapidly, ice on the carotid artery, steroid dose pak, Cluster vitamin regimen, Opioids, benzos, advil, melatonin, a Shaman in the Navajo tradition, Hot water pads, every other god dam thing.  In the end; every single cluster cycle required absolute submission to the Beast in varying amounts before I can see the light. 

 

Share this post


Link to post
Share on other sites

I urge everybody using triptans only as an emergency abortive. Nothing good comes out of frequent use of Triptans. Naratiptan may be better than Sumatriptan. Never the less, use them with very much caution. Never ever on a permanent base, no mater dosage used.  

A few days ok, but after you have to give a break!!! A break does mean to me at least a month...

I've made some really crazy experience using Naratriptan (for years) and Sumatriptan lately. Now I'm working hard getting more evidence and scientific background on my findings which at the moment I won't reveal at all, but yes, I may be able to come up with some really ugly  shit...

O2, verapamil and busting still considered being save! So I hope I can come back with some verified sounding input for all of us found through logic as I'm not qualified talking on a pharmaceutical level.

;)

 

Share this post


Link to post
Share on other sites

I am brand new to this site, though I have had ECH for 25 years. I have always avoided medicine of all kinds, preferring to just sweat out the episodes. But during the last three episodes, I have experimented with using sumatriptan shots to abort headaches. They are AMAZING until they SUCK. And when the suck, you will want to die. I had suspected they might be causing rebounds and extra headaches, but I wasn't sure because I would only use them two or three times during a 4-8 week episode, and no more. But in my current episode, I have used them twice, separated by only a few days, and my head has gone plain crazy, shooting out 9 bloody headaches a day!  Previously (before using ST), I would get 2 at night and one in the day. So if your choice is the gun to the head, or the shot to the leg, please take the shot. But if you can, my advice and experience are AVOID ST at all cost. I am going on the prednisone taper today for only the second time in my life because my headaches have completely spiraled out of control.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×