Anyone dealing with Cluster headaches for many years?

I've had them for many years and been taking Topamax about two months now. I am getting fewer and less painful migraines. I'm not sure how long this medication has been out but I wish I found it long ago. I had been taking Sumatriptan after a migraine started. Of course the ones I'd wake up with were the worst and when coupled with nausea, very difficult to get ahead of. I haven't had one of those. Pretty amazing. One plus side effect is weight loss.

Hi @benchi300, were you able to see @vellen's response and what they have used to help with their symptoms? I'd like to also invite @faithann64 and @jalo as they also discussed experiencing and struggling with cluster headaches/migraines.

@benchi300, was verapamil what has been prescribed to you? How are you currently managing your cluster headaches?

I have a chronic form of cluster or hypnic headaches. Basically everytime i go to sleep i wake up with a headache. When it started 12 years ago it was more the severe form that usualy comes with cluster headaches , but it quickly became like a chronic dull type tension headache form. I've tried many medications to prevent them over the years but never tried verapamil. a lot of medications loose there eficacy over time or has too much side effects. Ive tried botox 2 months ago but havent notice any change at all. My neuro is open to me trying emgality to see if i get any relief from it. Anybody here had long time relief with short rounds of prednisone ? i havent tried verapamil yet, will talk about it to my neurologist. Thank you

Hiya. Yes, a short Prednisone knocked a particularly bad bout on the head, and just tapered down after a couple of days of high dose. Think this was to help until the verapmil got them under some control.

Hi there. @benchi300 , I'm in the UK so poss different protocol. Mine began 4 days after spine surgery, which was just a world of pain on top of a world of pain. I had a short high dose of steroids once to control them quickly, and also went on stints of Verapamil, as well as the Triptan Self Injection pens which work super quick if you time them right, but could only use 2 in 24 hours, and they kind of make you feel like the Ready Break kid ie. kind of nuclear like your glowing. I had them only for 3 or 4 bouts, but finally got hold of high flow oxygen - if you can access that and know how to work it well with timing etc - it's the most effective with least side affects, but is tricky to get your hands on. I joined a Facebook group for Cluster Head folks, most of which were in the US. Found them so helpful with info and support. I'll find a link if u poke me. Obvs, avoiding triggers is the biggy, but not easy. Little Clusters can sometimes be chased away by drinking Red Bull ( I think it's the taurine in it) , or freezing your head helps but not too easy. Basically, they're a condition from hell, and despite being left with back and nerve pain each and every day, I consider a day without Clusters a fine and dandy day. Touch wood I've not had a bout for a few years. I wish you and everyone with them huge hope, strength and patience xxxx

Try looking into somatic thinking.
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