Hello:

Thanks for all the great information on this site!

I have been diagnosed with hemicrania continua and possible intermixed cluster headache (it is possible also that it is just the upper extreme range of pain for hemicrania continua - but the pain increases in a clocklike pattern).  I was a migraine suffer for years, but The Headache is another thing altogether.  I have had it continuously since December 2007.  Besides the pain being constantly there, it differs from migraine in that I cannot be still when it peaks until I get to the point I can't control my arms and legs from the pain, and the pain if it gets to that level lasts and lasts and lasts...

Indomethacin has helped but I am not able to take enough to stomp out The Headache, and every three to four days I am in pain at non-functioning levels.  I have also developed pancreatitis from the indo and have been told I will need to d/c at some point.  Sigh...

I chanced upon this site because my headache specialist is recommending an occipital stimulator implant, and I hope that some members have had experience with it (either good or bad).  I am going to see a pain managment specialist this week to find out my options (if I am even seen as a candidate).

Any information would be appreciated!  I have followed the thread concerning OS in the treatment section, where it appears two members at least have experience with nerve stimulation. Since my pain is continuous and fluctuating, I am not sure if it is the same as they have experienced.

mle134

thank you Oliver!

That thread actually mentioned a couple of studies I had already looked into - Goadsby and Hayek. 

The pictures of the surgery are very graphic further on.  It seems quite invasive, but I don't have many options.  I'm just guessing at this stage whether I would be accepted as a candidate.

The results of lowering the medication needed would be great for me. Thank you again!

mle134
Emily