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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I have been living with episodic cluster headaches for over 20 years. I have used everything a doctor can prescribe with little relief. I still have my Triptans (nasal) but I don't use them any more. I would research everything I say for yourself, I am no doctor. Saying that I will say this, at first sign of a cluster cycle I microdose Psilocybin Mushrooms, and follow up with another dose one week later. It breaks the entire cycle, not just one attack. I did this for the first time four years ago and it stopped the cycle in one attack, and I experienced the longest remission period (four years) in over 20 years. I again last week took a single dose and it stopped the cycle completely. ClusterBuster.com is a great resource. I pray this helps at least one other person get rid of the living hell that we deal with.

I have had clusters just about every other year for 30 years. New headache specialist suggested a 3 doses of Emgality. I'm a little hesitant but not sure what else to do next time they hit. Mine are more cervicogenic, so they said, but I rock back and forth, bang my head and scream. The headaches no longer stop on their own (tried fighting for 2 hours) and they hit a couple of times a day. To stop them, I have to use the sumatriptan injections. However, I give myself half doses of 6mg vials (not auto injectors). I have the kind that has two vials and they clip into a blue container. I hook the injector onto a vial and spin to pop the dose up, and then spin it backwards so I can pull it the rest of the way out with my hand. I put the needle in my arm and use a q-tip to push the black stopper down halfway. The next round I use the same needle (only 3mg left) and push that into my arm with the actual injector. That gets me 4 shots out of the two vials. Can't use too many per day because they will rebound. To stop a cycle I have to get facet injections into my C2-3. Something triggers my muscle and it pinches the nerves. The spasm will only stop with a steroid injection. Not sure why these headaches exist but they are truly hell on earth. I also belong to the cluster headache website but not sure how to go about getting mushrooms. I heard years ago that it works but never looked into it. You would think with technology and medications today, we would be able to put an end to this hell.