Hello, I was diagnosed with cluster headaches when I was 15 (5 years ago). I take verapamil and use a combination of imitrex injections and oxygen as abortives. The imitrex injections are the only medication to offer any relief but unfortunately they are expensive and my insurance company only likes to pay for 6 cartridges (12 shots) a month. This spring I have had a particularity bad cycle and have been going through lots of injections so my neuro game me imitrex nasal spray to try.

The nasal spray doesn't seem to be very effective, even when I take two 20mg sprays at once. What really surprised me though was the fact that the nasal spray actually made my headaches more intense (they will intensify my current headache after administration), and had no noticeable effect on the duration. I vaguely remember the tablets making my headaches more serve when I tried them some years ago. Also, this cycle I've noticed after taking an imitrex injection to abort a CH it will quickly intensify the pain but they headache will disappear quickly after (5-15 minutes).

Does anyone have similar experiences? Have sumatriptian sprays, tablets or injections actually made your headache WORSE? And should I be worried that my imitrex injections may stop working? I really don't know how I would manage if they stopped working effectively...

Thank you everyone for your responses.

dave

You have an unusual picture but, in light of this report, not entirely out of the question for you.

Have no alternative but to work with the doc, considering dropping Imitrex and use another triptan and see what happens.
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Headache. 2004 Jul;44(7):713-8.   

 
Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.

Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

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-naive 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.

PMID: 15209695 [PubMed]

{Note from BJ: Review of PubMed in 1/11 found no citations with this type of data in the last 10-years. The absence of newer reports suggests that experience of recent date is not stimulating much attention on this topic. In view of this reports comments about quick return to the former headache pattern, it appears such changes in frequency is not a significant issue.}

Very interesting report, thank you. I have noticed increases in frequency of attacks which could be attributed to the sumatriptian shots..

Seems like a vicious feedback loop.. more headaches.. more shots.. more headaches.. more shots.. ad infinitum..

The nasel sprays take a bit longer to work than the injections but I've always used them because they are more convenient, especially when you are not at home.

ANY of the Triptans will and DO cause rebound headaches.  That is why we always tell folks to only use them in dire circumstances. 

Is it normal for them to intensify the headache, though? When I use the sprays the pain just becomes more severe.

Re.#4: Linda and I will split a hair on this question. Triptans CAN & MAY lead to changes in the headache experience but there is no evidence, that I can find, which supports the idea that they DO (implying a universal/very common response).

Review of the last 15+ years of literature on side effects with sumatriptan show a very uneven picture but clearly no general evidence of a broadly based pattern of negative side effects. The abstract I posted, above, is a fair representation of the literature: possible side effects which, not common, and easily resolved with a change of meds. In my judgment, I don't see any evidence to avoid sumatriptan, given it's excellent record of effectiveness and safety. The exception, of course, is if you have a response which leads to considering a change.

With any med, for any condition, we are always trying to balance the benefits against the side effects. Or, use it until your PERSONAL experience says it's not helpful for YOUR body.

I use oxygen as my primary abortive, but always keep the trex injectables on hand in case I get caught away from my tanks or with an empty tank. The trex always aborts my attacks and has never increased the pain level.

You don't have to spend much time on the board to realize how radically different people are in their responses to the various CH treatments. That's why as Bob said, it's important you try and keep an organized approach to trying out the various treatments.

Here's a link to the oxygen therapy, as I said, it's all but eliminated my trex use. No side effects, cheap, fast, not much to dislike:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Joe

Thank you for the responses. I do have oxygen tanks and have used it as an abortive, but will minimal success. Although, I recently discovered my lack of success may be due to the fact my doctor set me up with a regulator that maxes out at 8 LPM and the wrong type of mask. I'm going to work on getting a proper regulator and mask and hope for better results. Can't wait for spring to be over...

I use the nasal spray and within 2 mins my headaches will be gone for days. It has never that I can remember made a headache worse. I havesaid it before and I will say it again there is an art to using the nasal spray. If you end up tasting it your wasting it...

ddorz wrote on Apr 26^th, 2012 at 1:41pm:

Thank you for the responses. I do have oxygen tanks and have used it as an abortive, but will minimal success. Although, I recently discovered my lack of success may be due to the fact my doctor set me up with a regulator that maxes out at 8 LPM and the wrong type of mask. I'm going to work on getting a proper regulator and mask and hope for better results. Can't wait for spring to be over...

You will be AMAZED at how fast and COMPLETELY you can abort an attack at the higher flow rates. 15 LPM is considered the rock bottom flow rate for most CH'ers, with some finding NO relief at 15 LPM, but aborting their attacks in minutes at 25 LPM. Start HIGH on the flow rates, then back off until it doesn't work as fast. That'll give you a good idea of what you need.

Joe

Thanks everyone for the help. Just ordered a 0-25LPM regulator and non-rebreather mask on amazon. Hoping they will be here by the end of the weekend so I can try the oxygen out again.

I'm sure you'll appreciate the difference that a flow rate of 25lpm makes. I know that for killing off my CHs that 25lpm is over twice as quick as 15lpm, so that means I've avoided a whole lot of pain multiple times.

Mike NZ wrote on Apr 26^th, 2012 at 10:26pm:

I'm sure you'll appreciate the difference that a flow rate of 25lpm makes. I know that for killing off my CHs that 25lpm is over twice as quick as 15lpm, so that means I've avoided a whole lot of pain multiple times.

That's good to hear. Has anyone tried flow rates as low as 8LPM? That's as high as my regulator goes so I'm assuming that was causing the inefficiency.

That's a common problem, seems the few docs who DO know about 02 prescribe it at 8 LPM. A few, like Jimi, could abort at rates that low. Most require at least 15 and find at higher flow rates the aborts are faster. I use a demand valve, similar to what a SCUBA set up looks like so it's unlimited flow. My aborts run 6-8 minutes with that set up. It's actually hard work to totally hyper-ventilate...almost tiring...but the first time you knock beast on his butt in under 8 minutes you'll see why we all push it so hard. Hope it does it for you too.

Joe

Bob Johnson wrote on Apr 26^th, 2012 at 9:58am:

I don't see any evidence to avoid sumatriptan, given it's excellent record of effectiveness and safety.

I disagree.  If you do not stop taking sumatriptan, you will never know if you are getting rebounds from it.

The only thing I can think of as far as Imitrex spray making your headache worse (and grasping at straws here) is if you are already in a cluster, and your inflammation is up, AND you are having sinus problems...Most people nose's don't appreciate funny drugs going up there...Maybe it's increasing the inflammation and irritating nerves involved with cluster?  (again, grasping at straws)

-Ricardo

My personal experience with Imitrex injections is very clear:  There is a "pee in your pants to keep warm" effect. Both frequency and strength of attacks gets higher. I don't know what is true for others.

ddorz,

I never had any success with Imitrex nasal spray, but they didn't make my HAs worse. Injections worked almost every time, but there is a rebound effect. I've taken up to 6 injections in a 24 hr. period. Have been chronic since 2004 and had clusters since 1996.

I started Batch's D3 regimen in Dec. at the height of a headache swarm and am now almost pain free. I have my life back. I've only had 1 HA in the last two weeks. It was so minor I'm not even sure it was a cluster. I instinctively killed it with a 1/2 Trex shot.

FWIW. Best of luck...

An abortive treatment plan would give due consideration for the most effective least invasive abortive first.
1:  02
2: vascular or cardio stimulation eg; exercise,showers, cold air therapy, cold water consumtion.ect,ect and  02
3: 02+caffeine
and last
4:pharmacuticals or triptans of any sort.
Key word: treatment plan
but thats just me, not suggesting anything to anyone.
tachead

This happens to me every time--the HA immediately (somehow!) gets worse after a shot, but then 2-3 seconds later, no pain.  I feel like I even read this side effect in the patient leaftlet, but I'll have to go back and check.  So far, the 'trex still works like a charm.

Er, I meant 2-3 minutes later.  I sure WISH the trex worked that fast!   ::)

Thought I would update- Received my 25LPM regulator and non-breather mask in the mail and have had great success with aborting headaches using 02. Using 25LPM I can abort a headache in as little as 5 minutes, very excited about this!

Also, not sure if its a coincidence or not but I noticed that after not using any imitrex for several days I've had less headaches in general, in fact I went an entire day yesterday without one. Like I said not sure if its a coincidence or has something to do with the sumatriptian.

Thanks everyone!

Great news with the oxygen, now you see why we suggest people go to 25lpm as the abort times drop which means much less paind.

For the imitrex it sounds like it could be rebounds were affecting you.

I'm not much of a fan of the nasal sprays either. It changed my cluster from a stabbing nightmare to a burning stabbing nightmare. I also had the same experience with Immitrex- for about 10 minutes the pain became more intense, then it goes away. As long as you get the shot in early, it's worth the price for me.

I can verify that about 30 seconds after Imitrex injection my headache shoots from 4-5 pain to 8-9, and this will last between 7-12 minutes.  After that, the pain will drop to 0 in a matter of 20 seconds.  If I do not inject, I'm stuck with 4-7 pain intensity for 1-2 hours.  I reluctantly prefer the 10 minutes of 8-9 level pain.  But I sure wish O2 would've worked for me...

Very noticeable spike (2-3 KIPs) in pain upon administration of Imitrex Inject but complete abort within 2 mins thereafter.

Rebound for me is purely a matter of dosage over a 24 hour period. I only use the injection as a very last resort, if O2 isnt working and if I am heading towards a KIP10. Once used I try to not use it again for 24 hours at least.

I have found the imitrix tip less useless than others have. 2 or 3mg just dont do the job for me. Takes too long to act and I am guaranteed to be back on O2 or a second dose within the hour.

Importantly, you may want to talk to your doc in order assess your Verapamil dosage, if you are still getting attacks. Many people here see Verapamil suppress CH completely at dosages of 480mg and up.