Chronic daily CH / migraine
rating: +1+x

JayWikiCH

my age
56

Diagnosis: Chronic cluster/migraine
Clusters started: Spring 2012

background - family, location, career, etc.
NYS

Hi folks,
One day about 3 years ago I got this terrible headache. It lasted all day and into the night. I never had or felt anything like it. Was banging my fists into my head, tossing and turning, ice packs on my forehead, just trying to get some relief or replace the pain in my head with some other pain (like headbutting the wall by my bed). Also, the pain would change forms. I couldn't believe it. First pounding, then a boring feeling, then it felt like someone was sticking their finger in and probing around in the hole that they just bored, then an extreme tightness. All happening on the right side by my temple and behind my eye. A few times it would let up for a while, can this be it, I thought, only to come back again. It was finally was gone after, what, 15 hours? And while any of my headaches can last that long, I've never since experienced that level of pain. Had 3 MRIs done after that.

Fast-forward to August '14. I see a neurologist. He puts me on Topamax with Sumatriptan on the side. I initally take 100mg Topamax (25, 50, 75, 100 over a month). Since then, I've been up to 200mg, and now I am on Verapamil 180mg. I've been on that for a month and am thinking of going back to the Topamax because I don't think it's working. Honestly, I don't know what works and what doesn't any more. EXCEPT….Sumatriptan. Yeah, that works! In fact, I don't know where I would be through all this without it.
I keep a headache journal and before I saw my neurologist, I was getting 20 headaches a month. Mostly being awoken either 12:30am or 1:30am. And sometimes it would go away on its own and come back later in the afternoon. Then I would have it for the rest of the day, into the night, and it would be gone by the next morning. No dinner, no nothing, just go to bed and wait. Or it seems like the entire day is just one long headache of varying intensities. And there's always that cloud. So after seeing the neurologist and getting meds, the number of headaches I've had per month since Aug. '14 have been 13, 19, 20, 9, 12, 11, 17, and 16. Not a good showing and really a waste of money I'd say, if I had to pay for the meds myself. Again, except for the Sumatriptan (Imitrex). And right now all I'm really doing is waiting for my next headache to hit so I can take a shot of Sumatriptan.

Now, that's my story so far. Does anybody know of any drug combinations that have helped? It seems to me that combining Topimax with Verapamil will give you the benifits of both and what one lacks, the other will provide. That's what I'm doing now since I still have some Topamax left. But my Dr. says no. I'm sure he would explain why if pressed.
Has anyone tried lithium? Surgery? Deep nerve stimulation? Corticosteroids? Interesting: http://dizziness-and-balance.com/disorders/central/migraine/cluster_headache.htm, http://www.ninds.nih.gov/disorders/headache/detail_headache.htm

Any help, questions, or other insights would be appreciated. Because it seems that aborting a headache once it starts they can do fine. But to keep you from getting them in the first place, they know as much about it as I do from researching these web sites.


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