Sumatriptan and increased attack frequency

[CHfather]

No oxygen???   (You don't want to use meds, that's your business.  But oxygen is so benign and effective.)

Have you tried the D3 regimen (in the ClusterBuster Files section)?

Please let us know how your taper goes.   Good luck.

[swiftlaw]

Big Hitter.

Welcome; but sorry to meet you.

prednesone is great for me - I use a dose pack once in a long (10 week) cycle - just to get a few good days in a row. The other side of the prednisone pack is like - "Welcome back to Hell !"

Good luck

 

[BigHitter]

CHfather and Swiftlaw, thank you for your replies. Nice to meet both of you, but, yeah, wish we'd never met

I did try oxygen, but it caused rebounds, too. I have a pretty good - no, a great neuro in Dallas; in fact, clusters are her clinical specialty. We have discussed sumitriptan and oxygen, and she agrees that ox and st can cause bad rebounds in some patients and that is certainly the case for me. I have also avoided verapamil because they lengthen my cycle, and again, she is in agreement that V will indeed lengthen a cycle for some patients. My philosophy has (had) always been to fight the pain when it happens and get out of the cycle ASAP. But as I have gotten older (52 now), I just don't seem to have the fight in me anymore. So the last two cycles I have used the pred taper with verapamil. The first time I tapered, the results were great and as I came off the taper, I didn't have a banger for the rest of the cycle, tho the cycle with shadows just seemed to go on and on. This time the taper was effective, but the verapamil hasn't held up its end of the bargain, so the hits came back, tho not with the same intensity of pain. What bums me out about using the verapamil at all is that I seemed to have lost my ability to gauge where exactly I am in the cycle. In the past (pre-meds), I always knew when it was peaking and when it was waning and I could pretty much estimate to the day when the cycle would end. The meds have taken that away from me which causes an additional burden of stress and anxiety. Oh well, I've blabbered on enough. Good day to you guys, and may we all someday never have to hear from one another again!

[CHfather]

Big Hitter, to ask again -- Are you doing the D3 regimen?  https://clusterbusters.org/forums/topic/1308-d3-regimen/   It can make a huge difference.

Back when you were getting rebounds from oxygen, were you staying on it for 5-10 minutes after the attack had been aborted?  And were you combining it with an energy shot such as 5-Hour Energy?  And was your O2 system and breathing strategy optimized?  I've read a lot about these rebound attacks over the years, and there's a report of them from 2011, which almost certainly was not conducted with what we know today to be the best system (high-flow regulator, top-quality mask, and hyperventilation).  In what I have read here and at ch.com, many people overcame that rebound effect with one or all of the things I just mentioned.  Just a thought.

22 hours ago, BigHitter said:

may we all someday never have to hear from one another again!

Yep.

[BigHitter]

Hello, ChFather - I followed the protocol to the letter - rebreather mask, high flow, everything. I got the script from my GP who was knowledgeable about the use of oxygen for clusters and I matched it to the protocol that was published on the old clusterheadache.com website. But I still rebounded. My neuro at the time said she was aware that Ox can cause bad rebounds for some, and I guess I was that "some." I have been a user of red bull for years and it is a godsend. The caffeine/taurine mix is very effective for me, but it is tough on the system to drink 5 of those a night!

[CHfather]

On 6/21/2017 at 1:14 PM, BigHitter said:

I have been a user of red bull for years and it is a godsend. The caffeine/taurine mix is very effective for me, but it is tough on the system to drink 5 of those a night!

B'H,

So sorry about that lack of success with oxygen.  I keep trying to think of other oxygen strategies, but it sounds like you've given it the best try you can.

You might consider an energy shot such as 5-Hour Energy instead of the Red Bull.  Those little 2-ounce shots actually have considerably more caffeine and taurine than an 8-ounce Red Bull, so you might abort better and have less beverage sloshing around in you.

So, I have to ask this, and please forgive me if you've been down this road, too.  THE CH "lookalike" condition, paroxysmal hemicrania, is not helped by oxygen or triptans, but is sometimes treated effectively with steroids and verapamil, so it kind of matches your response profile.  (The standard treatment, highly effective, is the drug indomethacin.)  Do you think there's any chance you might have that and not CH?  https://www.ninds.nih.gov/disorders/all-disorders/paroxysmal-hemicrania-information-page

[swiftlaw]

Quote

Dennny -  Posted June 26, 2016 -  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.

Re visiting this issue.

I have been careless with the Triptan injections.  Here's why - I cycle once a year now - up to 12 weeks starting in early Spring.  So, all last year I did not discontinue my Sumatriptan injection prescriptions. I stockpiled. The cycle started in late April this year (2017) in June I had a very rare chance to take my 14-year-old to London and Paris on a ten-day trip.  I loaded up my suitcase with the injections and hit at least every day - sometimes 2 times a day and also used the Imitrex pill as a prophylactic - each for 10 days straight.

The first rebound, when it came, was so horrible I could not stop myself from using another injection to fight back the rebound - then when the CH broke through the Imitrex barrier - it was like white light - I was screaming out loud - a new level of pain and I know it scared my son a lot.   Stupid ?  OK, but I did not want to have to bail on my boy while in the Eiffel Tower or interfere with his first trip to Paris.  And I had not been thorough on these boards on the side-effects or actually read and digested Denny's post.

Now back 3+ weeks and the rebounds seemed to dissipate after I took them on cold turkey with no meds for 2 days a break and then 2 more days.   Now 2+ weeks later I have developed a nighttime hit every night at 2:30AM at KIP 4-5.  These I can put down with ice on the carotid and maybe some caffeine, however I have  developed a permanent all day shadow and a sore neck now for 10 days. I have not been taking the Imitrex but I feel like the medicine has me in a long-term downward spiral.

This continuation of the cycle is terrifying me - it will stop right ?

 

 

[spiny]

Oh Swiftlaw, that bites.

I can certainly understand the reason you did it. Pretty darn brave I think.

From what bit I know, yes, it will stop. Do you have O2 and are you on the D3 regimen? I don't re-call, sorry. Both are great and should help. In the long run especially the D3 stuff.

I find that caffeine definitely helps with the shadow. And a heating pad on the neck is a good aid. My neck will sometimes to ache for quite a while post cycle. I use heat and Ibuprofen for it. Sometimes at prescription dose - 800mg. Not long term or daily, but occasionally at that level. None of that stuff is good for your body daily. But, a doctor will often prescribe the 800mg for a week or two with an injury with inflammation. I have also found that head position when going to bed is of major importance to me. I turn the pillow on edge to get the right 'fit' for relief.

Have you considered seeing your doctor about this?

[BigHitter]

Swiftlaw, I have been in cycle since May 8. This is my longest cycle ever (25 years ech), so I totally feel your pain and share your anxiety. I was having upwards of 6 blazing headaches a day until July 7, when, three days after busting, they went down to 2 a day. I've busted twice since then but can't quite shake this cycle-I'm still getting about one ha a day. Like you I am wondering when will this bloody cycle stop!? Throughout the day I am dealing with a lot of shadows, too, which are more anxiety producing than the one ha a day. What sucks is that I always have a few weeks of shadows after my cycle "ends" (the painful headaches go), so I feel like I could be in the cycle for another month or more as I count the shadow portion as part of the total cycle. But I just think, if I went from 6 a day down to one, this too will pass. Good luck, and good on you for taking your kid on that trip. I would be scared shitless to do that, so you have guts. 

[BigHitter]

Switlaw, would you mind sharing how long you have had clusters? I take you are episodic.

[swiftlaw]

Wow, I've hadclusters for 26 years. 

 

[Odyseus]

I think I'm coming late to this thread but I have notable experiences. 

I have always felt that triptans (migrinal, imitrex, emerge and others) cause rebounds.  I had a transient ischemic attack (TIA) in 2013.  This resulted in my passing out while driving and mayhem ensued. My neurologist at the time led an extensive study and found that it was related to triptans. In 2015 I had an enlarged heart and arrhythmia develop. The Dr's felt it was related to a virus but they had no conclusive proof.  I've always felt it was related to triptans which I still used at the time. 

 
For me triptans are not worth the trouble. 
 

[Into Light]

On 3/18/2015 at 9:32 AM, alleyoop said:

After hearing from several of you suggesting making this thread a "sticky", it is done. 

I feel that it is that important. 

BB

What is.a sticky thread?

IL

[Into Light]

I had to banish sumatriptan totally from my life. 1 shot would stop the headache, but only as side effects ramped up. I would experience increasing nausea. Weakness would become so overwhelming I could not even rest my hands on my chest while lying down. I would pass out. And awaken with no HA, but unable to do anything other than lie on the couch for about 5-7 days; could not think clearly; could not read, certainly could not work for my art business. I couldn't even sketch.

My doctor switched me to oral rizatriptan, but I don’t take it. I am on 480mg Verapamil/day. Any change from that or missed dosage yields the return of CHs with a vengeance.

I’m ECH with chronic shadows.

[mit12]

My story about triptans goes like this. My doctor gave me a prescription for imatrex back when it first came out I used it a few times and had no success at all as a mater of fact it made the headache worse. Next was Zomig ZMT and Nasal spray these worked and my insurance was covering 72 for 3 a month supily plus my doctor would give me hand fulls of samples every month. When I found this site I was using all 72 of the zomig that my insurance was giving me and most of the ones my doctor gave me also. I was having hits almost daily and was ready to end it all. The great people on this site turned me on to trying MM which was against my way of thinking but it was a last ditch effort. Well thank god the busting, O2, D3 program and getting off of triptans saved me. Now I only use triptans while on vacation as a last resort so that my condition does not ruin my wife’s vacation also. If I had to use triptans when I get home I get off of the triptans cold turkey.

So to summarize before triptans I was getting 3 or 4 headaches a month when triptans reached 72 plus doses in 3 months I was at almost every day like clock work 3:00 pm hit driving home with one eye shut and sitting in a dark room rocking back and forth until sometime late in the night or early morning.   
 

My migraines never stopped and I was getting CH attacks occasionally until I started using Nurtec every other day. This has stopped the migraines almost 100% and I have not had one CH since starting this treatment. I am a little different than most as I have never had a CH without having migraines for multiple days in a row. Now that Nurtec has stopped the migraines the beast has been dormant. 
 

I hope that telling my story can help someone from going down the rabbit hole that I went down. This story has a happy ending but it was so close to ending in the worst place imaginable. Thanks guys! 
 

 

[mokokom]

Oxygen increases the number of attacks also.

[CHfather]

On 6/25/2022 at 1:11 PM, mokokom said:

Oxygen increases the number of attacks also.

Pretty sure most folks here would disagree with that.

[Bejeeber]

I had already piped in closer to the inception of this thread, but here I go piping away again.

I semi-agree with this:

On 6/25/2022 at 1:11 PM, mokokom said:

Oxygen increases the number of attacks also.

......in that in high cycle, there are those of us who will be awakened hourly with yet another attack, following our O2 aborts. 

That's a lotta attacks, and since I've aged into the 3 hour long attacks (when not aborted), it is a greater quantity of attacks than would have been possible without the O2 aborts.

Still, I think of these hourly attacks following O2 aborts as being more like re-aborts of the same single attack that keeps just wanting to come back and break through. And the question can come up regarding whether O2 technique/set up/adjuncts could be that much more optimized for longer lasting aborts.

[jon019]

 

4 hours ago, CHfather said:

Pretty sure most folks here would disagree with that.

.....ummmm....yeah....

1 hour ago, Bejeeber said:

Still, I think of these hourly attacks following O2 aborts as being more like re-aborts of the same single attack that keeps just wanting to come back and break through. And the question can come up regarding whether O2 technique/set up/adjuncts could be that much more optimized for longer lasting aborts.

...ummm....yeah ^^^^^^^^

.....out of hundreds of cycles when ECH, there were a handful of the "one hour wakies" type for me (handled differently, see prev "wake up"posts). no changes in nothing before or after. while there are always tweaks you can make to O2 usage, i know i never varied far enough to prevent oxygen from being its typical sanity/life saver. something else happened (physiological?) ....and just like ALL our other tools "sometimes", for some, it just stops working/works differently....hopefully only for a while.

....O2 never has been, don't see how it would ever be, anything but a most effective abortive (don't forget the caffeine/taurine). it is transitory, not a prevent, not a trigger.....

....as an ultimate believer in O2 i must add: before any clusterhead gives up on O2, they would be WELL served to insure: a non rebreather mask, lpm 12-15+, and a practiced breathing technique(slow breathe, breathe/hold, hyperventilation, combo).....

 

 

 

Edited June 26, 2022 by jon019

[BoscoPiko]

17 hours ago, jon019 said:

practiced breathing technique(slow breathe, breathe/hold, hyperventilation, combo).....

 

100% agree with this as I have had to change techniques multiple times to reach a successful abort. Sometime the breathing technique that worked the last time wont work the next so on and so forth.