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My son has just been diagnosed with CH, we went to the MD yesterday and got the definitive diagnosis. He got 2 prescriptions: Topiramate and sumatriptan spray. The spray would be for when he is at work and wants to abort an attack. (He is a driver). The spray wasn't covered, needs authorization. I don't know if insurance will give the auth, we paid out of pocket $300.00 in the meantime. He is afraid to use it do to the side effects he has heard of. (a tightening feeling in the chest). The MD told my son that some patients have told him they would rather have the CH!! Also, it will take some time for the Topiramate to take effect. Has anyone had experience with sumatriptan and did not get the side effects? My son just had a CH at 3:30 am and would not try the spray do to his fears of getting a panic attack from the side effects! 13 October 2016 - 06:11 AM

I use sumatriptan injections, and have no side effects at all.  They work for me in 5 - 7 minutes, and after 10 minutes you wouldn't even know I'd had an attack.  The only thing that happens is pure blessed relief.

Everyone is different though, and some people do have unpleasnat side effects.  The best thing for your son to do, is try it for the first time at home.  If he finds the side effects too bad he need not use it again if he doesn't want to.  It would be an awful shame if he continues to suffer when he has something that would help enormously, and maybe not have any nasty effects.  he should at least try it once.

Thank you so much for the information, I will continue to encourage him!

Hi Ann Marie,

I'm so sorry your Son has this diagnosis. The good news is you've found the one place on the internet that has all the info he needs to get his life back. I've been fighting these for over 20 years. This place and the people here made a huge difference for me.

Sumatriptan is nothing to worry about compared to fighting the beast without it. I too use Sumatriptan. Though I use injections instead of the nasal spray. It can feel weird but it really works. I prefer injections to the nasal spray because of the awful taste. Though lots of people use the nasal spray too.

My main weapon is high flow oxygen therapy. There are zero side effects and I can abort an attack faster with high flow oxygen than I can with Sumatriptan. I use it at home, I use it at work and I use it on the road. Take a look at the info here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

My heart goes out to you as I know all too well what its like to have a child with CH. Two of my sons have had CH cycles and I have two daughters that suffer with migraines. HA is the family curse. It is always so much easier to fight through my own cycles than to watch them suffer.

Good luck and please encourage him to create an account here to do some reading.

-Dennis-

ann marie wrote on Oct 15^th, 2016 at 6:41am:

The spray wasn't covered, needs authorization. I don't know if insurance will give the auth, we paid out of pocket $300.00 in the meantime.

I forgot to mention, there is a procedure to get prior authorization from the insurance co. You need to call your Dr and ask that they get this started. It has to come from Dr. Once it is in place it will stand for one year. Then you have to get approval again. It's a pain but it'll save you money.

Even when it is approved there are limits placed on how many doses they will cover in a 30 day period. I find it's best to keep getting the rx filled even when you aren't using that much so its there when you need it.

-Dennis-

The MD told your son that some patients would rather have CH's? I call Bullshit!!! I've known female CH sufferers that have said they have experienced and would rather give natural childbirth without epidural, etc than be attacked with a CH.

Personally, that comment from the MD would make me ? the MD.

If you want MD recommendations in your area who are familiar with CH treatment, feel free to PM me as I have a comprehensive list compiled 3 years ago provided by CH sufferers nationwide from this website.

Imitrex injections, ask for vials, use insulin syringe dividing doses, or try the Imitrex Trick/Tip...research on this site archives for more details. 

Batch's vitamin regimen is the best remedy out, try it, no prescription required, inexpensive, and all natural, nothing to lose, and everything to gain.DS test should be taken beforehand.

NON-rebreather mask, regulator with flow rates to hyperventialte aka ability of 25 lpm or faster, and a bottle of o2, prescribed or welders...that is a great line of defense! Small O2 bottles to keep in vehicle when driving, if hit with attack, pull over to side of road, put on hazards, hyperventilate, and after 5 or so minutes, back to the day pain free...

Melatonin before bed, somewhat helpful.

RedBull energy drink or other energy drink with at least 1,000 mg of Taurine and Caffeine combo, slam one/chug it down fast immediately at onset of attack, priceless for many of us, may even chug a can and hyperventilate o2, this spells relief!

You've come to the right place for advice, ma of us know more than the doctors and have actually taught the doctors who to treat CH's. Absorb your reading, make your decisions and pray!

Good luck ;)

-Gregg in Las Vegas

I agree with Gregg 100%.  There is nothing, and I mean NOTHING, worse than a CH.  Side effects are a small price to pay to get rid of that pain.  If I had a £ for every CHer that would rather have a CH than a few side effects, I'd be broke.

I wouldn't wish CH on anyone, but I do think there are a few doctors who would benefit greatly from just one short attack. You'd soon see them scrambling for all the meds they don't want to give their patients.

Your son has to try it and make up his own mind.  I was terrified the first time I gave myself an injection - but now, they are my new best friend.  I dread to think of the pain I would have suffered if I'd refused to try them.