Hello! 

New to forums.  I wanted to post my experience as I just need to get this out of my head. 

Started suffering cluster headaches in November of 2015. Diagnosed as CH in April 2016.  Pattern is to have brief pain free periods with accelerating occurrences stating with one a month ramping to 2-3 a per day. Cyclical duration is about 3 months.  Pain free period often 10 to 14 days.  Headaches tend to take two forms ... 60 to 90 minute CHs with 9-10 scale "spikes" with a 1 second period between and 5 to 7 hour CHs with 6-7 "spikes" on a 1 minute period.

I've tried diet modification, high volume 02 with little success. 

Verapamil

Nearly immediately effective at reducing frequency.  First two weeks include significant reduction in intellectual capacity. Restriction of heart rate peak to 110 bpm results in loss of energy and ability to exercise effectively.  Some ED effects mostly tied to hear rate limitations.  Heart rate impact remains during usage. 6 weeks of usage of 240MG/day eventually proves ineffective with a return of headaches Scaling up to 340MG/day reintroduces mental impact, but again eliminates CHs.  Significant weight gain during period (calcium channel blockers reduce ability to convert fat to energy, compounded by lack of exercise efficacy).  3-4 weeks after increase in dosage, CHs return.

Topiramate

Added to 340mg of Verapamil after CHs return.  Topiramate caused significant impairment (loss of ~80% or more of mental clarity).  Load of topirimate and verapamil effectively for only 2-3 weeks before CHs return.

Lithium

Refusing to suffer the side effects of the verapamil and topirimate load, switched to 75mg lithium carbonate daily.  This resulted in a positive response for mental clarity, reduction in ED impact, and return of heart rate increases for exercise.  Resulted in a loss of appetite and overall motivation / passion.  Marginally effective in CH reduction mostly in the form of a reduction in pain for CHs to pain spikes in the 4-5 range.  That said, duration of CHs averages 6 to 7 hours with latent pain in the 2-3 range and spikes in the 5-6 ranges.  Periodic late night CHs have shifted to being shorter in duration (2-3 minute periods of 7-8 pain spikes on a 2-3 per second rate). 

Doctor wants to increase Lithium Dosage from 75 to 150 mg per day.  I am favoring shifting to D3 + Omega 3.

During severe periods, imitrex oral and imitrex injectable are used with about 80% effectiveness. 

I measure pain free in hours any more.  I've reached the point where I feel the urge to slam the side of my head into a brick wall until I loose consciousness. 

Am frustrated, tied, and feel no hope in the rest of my life being anything other than this.

Am planning to stop the lithium, add the D3 and Omega 3 recommended elsewhere, and possibly acquire spores for cultivation if I can't get into one of possible programs.

Am in Portland, Oregon.  Former USMC, father, computer geek, and CH sufferer

Hi there,

An excellent post.

The full D3 information is in the link below,

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


On the top left of this page you will see a list of tabs. Open the Oxygen info tab and have a read. It is unusual for a CH sufferer not to respond to O2 as an abortive. This might give you some tips.

Come back with questions and updates. Things will improve.

Peter.

Graemel wrote on Feb 5^th, 2018 at 6:49am:


What steroid did you try and what was the dose schedule? What was "limited succcess"?

Ch still bad. I went to quack today and am going back on the verapamil. I now have Imrex and cafergot to abort actual CH. Verapamil hopefully a preventative as before. If this does not work the next step will be to see a specialist.