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MarkN's profile

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Location: Huonville 
DOB: Monday, 19th November, 1973
Site: Not Entered
Facebook: Not entered
Status: Not currently suffering :D
Joined:  23rd June, 2012
Posts: 10
My Cluster Headaches started right after I had my first heart attack at age 34 and 364 days.
Within a month of that Heart Attack I had my first ever CH 'experience' and had absolutely no idea what hit me, I quickly came to realise the pattern and at first the doc had suggested migraines (of which I had never suffered) I felt really badly for all the migraine sufferers of the world at this point as apparently that was what I had been suffering from.
With my cycles lasting around the 12 week mark and then remitting for a similar amount of time eventually my local GP came up with Cluster Headaches and everything made a little more sense.
It had taken over two years from onset to prognosis at this stage and I had hidden myself away from family and friends whilst I was in cycle for that entire time. I covered the attacks and shadows with Grumpiness so that my wife would feel like leaving me be and never had to see me have an attack.
I had been very secretive about my suffering and alienated a few close friends along the way & put a strain on my marriage just so I could keep people I loved from seeing what was really happening.
When my GP came up with CH as a prognosis many things changed, it gave me a new to research and many things fell into place.
I found fellow sufferers on this website for one, which in and of itself doesn't physically help, but mentally was a massive weight off of my shoulders because I knew that other people here knew what I was going through and I didn't have to try and put it into words.

My family knows now and my wonderful wife is very accommodating, she has still only seen one attack for which I'm very grateful but at least she knows when and why I lock myself away for an attack.

I could go through the list of meds we have tried over the last few years to knock these CH down but the list is long and full of failures, my latest hope TOPAMAX (topiramate) used in the prophylactic sense has been an adventure.
With mixed results from the studies I have read, anything from a reduction of attacks per day to a reduced time to remission of just a single week, I have great hopes for this med.
The Side effects have been crazy, dizziness, very dark thoughts, pins and needles, complete and utter confusion & lack of motor skills.
Think walking around punch drunk with a plaster cast over your hands and feet and try getting anything done.
I started on 25mg per day and titrated up to 125mg per day (@ 25mg increments per week) until it just became too much, I dropped the dose by 25 mg per day over then next fortnight to 75MG per day and feel better for it, now that I am settled at 75mg I will increase my dose again at maybe 25mg per fortnight until I hit the apparently magic 200mg.

At age 40 now with 5.5 years of Cluster headaches behind me, we are still looking for a way to tame the beast but everyday brings a little bit of hope, something I had honestly lost for a little while there.

Thanks to my Family for being wonderful and to the members of for literally sharing my pain with me.
I always feel bad that I feel a little better because I know that you are here suffering the same thing.

Cheers guys and I hope you all find something that helps you though your next CH cycle.


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