Hey, I just wanted start off by saying I've lurked this site for some time now, but I've finally decided to join.

I guess I should start with some background information. I started getting my headaches when I was 18, so it's been 5 years now. My father also suffered from them; so I can thank genetics for allowing me the privilege of having them too. The first 2 years I was a guinea pig, since my neurologist at the time wasn't familiar with cluster headaches. I've tried countless preventive and abortive medications (many with terrible side effects) through the years, with no luck. It wasn't until about 2 years ago that my specialist diagnosed with having chronic cluster headaches. The previous neurologist refused to diagnose me with them, even though I told her countless times that they were indeed cluster headaches. I think the closest she got to diagnosing them was by labeling them as "chronic cluster migraines."  :-?

Anyway, on to my point. About 2 months ago I was diagnosed as being ADHD. The doc prescribed me 30mg/daily of Vyvanse for the treatment of it. Initially I was fearful of it making the headaches worse, which was absolutely frightening because I was getting them a couple times a day, EVERY day. It had been like this for ages actually. I recall mentioning to my specialist, "I guess it's too much to ask for JUST one week of relief and a 'normal' life." Despite this fear, I went ahead and started the Vyvanse. I figured that since they've been this bad, a few more wont kill me (I hoped).

I believe it was about 3 days into the treatment when I noticed something happen. My pain had immediately stopped. Dumbfounded by this, I had to find an answer to why. After some pondering, I concluded that the reason was because Vyvanse, being an amphetamine, constricts your blood vessels. Because of this, it prevented the dilation of my blood vessels (Hooray captain obvious, right?). However, I still was getting the symptoms of my headaches. It was strange to get that tingly feeling in my temple, followed by a runny nose, achy teeth, droopy eye, etc., without any pain. This definitely took some getting use to, but I still get anxious when it happens. I've noticed it happening less and less as time goes on though. I do still have a few that break through here and there. The only problem now is that I'm not sure if that tingly feeling is going to stay at that or escalate, so I'm hesitant on using my Zomig NS. If it does end up being one that breaks through, I'm basically s.o.l. at that point since it's too late for the triptan. But I can't complain because it’s not like it use to be. I've still got to make more observations and do more “tests.” Even though it's probably a terrible idea, I haven't taken the Vyvanse today, and won't for some time, in order to see if there are any changes. I guess I got so use to being a guinea pig, that I don't mind "experimenting" on myself. Plus it helps satisfy my "need to know" personality.

I'm curious if anyone else has had the same results. It also makes me curious if some sort of preventive treatment could come from this. Could it be obtained with a minimal dose of the medication in order to prevent side effects for people who don't have ADD/ADHD? If I'm not mistaken, dextroamphetamine has been used in migraine treatment. Even though they’re not the same type of headache, it might be possible to find some answers in that treatment.

It was such a dramatic change for me after having no luck for so long (yes, I know I'm lucky in the fact that others have dealt with them much longer than I have), that I felt the need to share this. I'm not saying people should run out to their docs and ask for amphetamines. I just wanted to post it just incase others have had similar results and to see if there might actually be something here. It could just be my dreamer mentality, along with my yearning to help others, which causes me to think something could come from this. You never know until you try.

Also, I’m sorry if I ranted, left details out or if the post has grammatical (or other) errors. I am tired and my brain is a fuzzy tonight.

Interested to hear that this is apparently working for you.  I'll be interested to hear any followup.

A few years ago, there was some talk of using Ritalin to treat CH.  Haven't heard much about it in a long time.

By the way, welcome to CH.com.  Glad to see that you've decided to start posting.   :)

Best,

Thank you for your response. Even though I never joined until now, this site did offer help for me mentally and with other routes of possible treatment. You can only get so much out of discussions without partaking in them though.

I'm assuming the discussion on Ritalin didn't go far? I'll have to do a search and see if I can locate the discussion on it.

Even though it'll be some time before I can do a follow up post, I figured it'd be nice to get some opinions of others or to give them something to analyze/think about.

I haven't heard of this route before, but many of our best treatments for CH were discovered by accident. Pleae keep a detailed journal, if you're not already doing so, there's potential of an exciting new treatment here. Hoping it continues to work for you!

Joe

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