Anyone have Cluster headaches? What helps?

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 am so sorry you are experiencing such severe pain and is including your back. I have a rare nocturnal headache that is a cross between a cluster headache and a hypic headache--it occurs nightly, 4-5X per night. Without effective preventatives, it was unlivable. Turns out Indometacin helps prevent the nocturnal headache about 95% of the time. After having limited success for treatment of those and my migraines, I visited Mayo Clinic early 2020 and it was experience and help I've ever gotten. My daytimes headaches (since childhood) are classical migraines with aura and my nocturnal headaches are super inflammatory, were untreatable and they do not fit the categories Migraine or Cluster exactly. I had ruled out dietary triggers over the years by elimination diets. I do have neck and upper back pain with daytime migraines and sometimes severe pulsating pain in my mouth (upper and lower gums). Since I have begun preventative treatment for the migraines with CGRP migraine drugs, the incidence of the migraines and back/mouth pain are much less frequent. And now my few migraines respond to triptans more completely and usually without multiple doses. Instead of daily as before the CGRPs, my migraines now average 5-6 per month with Ajovy and only 3-4 when I used Emgality. I still get the nerve pain in gums; but less in my upper back. I still get nerve twitches in eyelids and the back pain has become more like a twitch or pulsating muscle. Have you tried therapy with CGRP preventatives? I wonder if it might minimize the occurrence of headaches nerve pain and also the severity? Wishing you success in finding solutions.

To get more Oxygen from the air we breathe, it`s good to understand that Nitric Oxide is the element we need to inhale. Then the body converts it to Oxygen which flows thru arteries and vessels in your blood. Again that Dr Mandell on you-tube about NITRIC OXIDE can open some eyes and have everybody humming. Would you like to lower your blood pressure 50 or much more points on demand in 2 or 3 minutes. Dr Mandell will show you how. I promise you’re gonna Love “HUMMING”. Treetop

True “CLUSTER HEADACHES” are many times more painful than a Migraine, with a Migraine you want to be in a dark room and left alone to try to deal with the pain. With the Cluster you can`t be still. You want to run your head thru a wall or get a gun and blow it off! Some folks can get their Dr to prescribe E Tanks of Oxygen. Anything to get more Oxygen in the Blood.

True Cluster headaches are always limited to one side. The cure is Oxygen. Stress is usually the cause. They are called “Clusters” because when you have one you will probably have more before they quit. Avoid alcohol, caffeine, smoke and just saturate your body with Oxygen. Go to you-tube and search Dr Mandela—Nitric Oxide. Learn to hum. Will help you in more ways than you can imagine. Some people can stop them by spinning on a stationary bike. Gets the blood flowing and heart rate up pumping Oxygen to stop pain. Good Luck, Treetop

I would like to speak with others who suffer from cluster headaches and/or chronic pain in the thoracic section of the back. I am trying to find others who suffer back pain along with the headache.I have developed chronic pain in my back in the thoracic section between T3 and T5. The pain in the back mimics the cluster. It comes in stages, excruciating pain, disappears for anywhere from an hour to 12 hours, appears again. When I have the pain in the head, I never have the pain in the back. When I have the pain in the back I never have the pain in the head.

Try looking into somatic thinking.
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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

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.

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