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My general practitioner doctor has been treating me for cluster headaches, among other things.  I’ve had nerve blocks with little to no lasting success and tried a dozen or so preventative medications. The only western medicine preventative that might work for me is Verapamil. Currently I’m taking 360 mg ER. I was randomly losing partial vision for 30 minutes or so not during a cycle and with no headache. After starting Verapamil that hasn’t happened in over a year. MRI showed no problems. He hinted I’d be better off getting oxygen myself; which I did. The welding oxygen provides some relief but I’ve been struggling with feeling like I’m going to pass out using it while also getting some relief. The best thing I’ve found so far is sumatriptan and D3 regimen at the onset of a cluster cycle.  I know sumatriptan should be avoided. I only use them if the attack is really bad and/or I’m at work and need to work.  I don’t feel like I get rebounds and generally only have to use them once or twice a day for the first 2 weeks of my cluster.  I also split them in half. 
 

My question is, and the problem is, I’ve never been given a diagnosis. I’ve never been to a neurologist/specialist and my town is small and remote without specialists. I haven’t sought out a diagnosis because I feel like I’m being treated for cluster headaches regardless of a diagnosis. In the past I’ve been treated for migraines, occipital neuralgia, and cluster headaches. The cluster headache “treatment” has had the most effect. I’ve been suffering the “headaches” for 15 years, since 22 years old. I’m convinced I am having cluster headaches due to the severity, frequency, duration, and seasonal occurrences. I don’t get a red drooping eye or stuffed up.  Can cluster headaches come with no eye redness/drooping?  I just get a lot of pain, sweating, and, on the worst ones, ear ringing and once sided face tingling/numbness. I feel like I want to run off a cliff on the worst ones. 

Other than an actual O2 prescription, and given my treatments, is there a benefit to a diagnosis? 

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@EggMan welcome

i don’t get autonomical symptoms either with my headaches. I get pain mostly behind my head and ear, also behind my eye. I was wondering if I had occipital neuralgia because an MRI of my neck a year ago showed an inflamed ligament at the base of my neck. I was told I needed physical therapy but I can’t afford that. Have you found occipital neuralgia treatments are helping? 

Kat 

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Posted (edited)

...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is  treating appropriately tho the vison issue sounds more migraine than CH...

.....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed....

.....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV

best

jonathan

Edited by jon019
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It sounds like you would benefit form another opinion regarding your diagnosis.  There is no competent physician who would be offended if you sought out an opinion.  You have had imaging and have had this for a long time so it's unlikely something like a tumor.  Cluster headaches are a diagnosis of exclusion which basically means if the symptoms fit and nothing else is found; you have cluster headaches.

 

Personally I believe if you have the classic symptoms and O2 used properly knocks out an attack: diagnosis is straightforward.

 

The diagnosis and treatment of cluster headaches is pretty unique so a proper diagnosis is appropriate.  There is a whole constellation of severe headache called trigeminal autonomic cephalgia (TAC) many of which have a nuance treatment unique to that type of headache.

 

You are in an awkward spot if the O2 advise from @jon019 doesnt' abort an attack I would pursue another opinion.

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