I just come back from Hell.

My last cycle lasted for four months and during the last month I had nearly one KIP 10 a day where I stood under a cold shower just screaming at the top of my lungs for about one hour wishing to die but knowing that like all CH attacks it would eventually go away. Even LSD did little to alleviate the pain.

The cycle broke in three days after my new neurologist put me on oxygen.

Here's my view on the matter after a little pondering.

During my first fifteen years of undiagnosed CH, my cycles never lasted for more than 3 weeks and compared to what I have been through recently they were not so painful and rarely got me to the point of crying.

The first time I took Imitrex I nearly cried with joy to finally have found something that would work against the damn headaches. I had 3-5 attacks a day and strangely the Verapamil and Topamax didn't decrease the number of attacks I had.

But I didn't mind as long as I could use my beloved magic pill the pain would go away in 15 minutes. That was unfortunately only true in the beginning. At first the pills worked 10 times out of 10. Over the years its effectiveness decreased slowly to come to a disappointing 2 out of 10 attacks successfully aborted. That was still worth it in my view and better than nothing.

Actually my previous neurologist should have changed my treatment when I still had 3-4 attacks despite the use of preventatives. I took nearly the maximal dose of sumatriptans everyday thus saturating my system and rendering it mostly ineffective and guaranteeing a rebound once the substance disappeared.

It's all my fault as I didn't heed the numerous warnings on this forum. It was also bad luck. When my first neurologist laughed at me when I suggested trying oxygen saying it was archaic and less efficient than sumatriptans. I didn't insist and got my family doctor to prescribe me oxygen but I got the wrong type of system, the electric system that purifies air and that's not effective against CH.

This year I decided to go to the best specialist in Belgium but I had to wait for months for an appointment. He confirmed I had received the wrong treatment. Indeed after using oxygen to abort the attacks and thus completely stopping sumatripans the changes were spectacular. My cycle broke as it should because I'm an episodic FFS!

Sumatriptans indeed fueled an artificial cycle that kept on going for four months where it could have only lasted for 3-4 weeks.

I think that sumatriptans can do wonders for people who have low intensity CH ie less than one attack a day no matter how painful. But it can become a real Hell for people who have several attacks a day.

Just thought I would share this experience and encourage people to spread this information to their neurologist as we shouldn't count on big pharma to spread it.

It is always good to know all people's experiences with treatments because you never know which one you will be.  With that said, I will share a different point of view.  My sister and brother have used Imitrex for multiple headaches per day (for years) and have had very good results.  They even say it shortens their cycles.  Personally, I don't use it due to the potential side effects, but they LOVE it.  So, good thing there is chocolate and vanilla ice cream, huh!  Good luck to you!

Joni   

Thanks for your replies. I will still have a few shots and pills in my car for emergencies. As long as I use O2 as the main abortive, a shot heer and there might come in handy in certain situations.