Posted by Ray L on April 24, 1998 at 01:49:28:
Cluster headache sufferers:
Well, I guess I will throw in my two cents worth. I have read so many cases out there and thought I should share my experience with them in the event some of this may help. I have suffered from these bouts of hell since I was 18 years old and found them to become the worst at about age 25. I was diagnosed at that point which I found I had them usually every year about the same time (April) for two months and then they disappear. They used to call these "accountants headaches" since so many people got them around income tax time. I still believe it is an allergy issue and like Dan's issue as well. They would reoccur usually about the same time each year. The intensity varied from mild to excruciating. I have tried numerous drugs over the years to combat these. Mine have been very resistant to various drugs and as most sufferers know, what works for some doesn’t work for others. I am now 44 and the bouts dropped off for 4 years until now. Hope in your old age!
I have had success in varying degrees with Prednisone combined with Imipramine and Sansert. The problem with this combination is that you usually run a very high metabolism and will gain weight and eat ravenously during the period you are on this medication. It dehydrates your system so you better drink lots of water if you use it. While this is tough stuff, most will agree you will take it over the headache from hell. My headaches are typical cluster. They can be as many as 5 in a day and last from 1 to 1½ hours each. I used to take Periactin with some success, but found the headaches became resistant to the medication. For pain I use aspirin in the early stages. This is good for awhile and is a swelling reducer. I put pain medication under the tongue and let it dissolve there. It gets into the blood stream faster than just swallowing it with water. (You learn all the tricks with this thing). I later move up to Midrin and then Hydrocordone. The last one takes off the edge to bear the pain. Oxygen, considered an old treatment, never worked for me. I have not tried Imitrex injections yet, but I hear varying degrees of success with it. There are also some new sprays I believe that contain pepper that seem to work for some people. I also used to take Ergostat (ergotamine) and it would take the headache away. I’m not sure this one is too clean on the system as well though. Coffee helps me with this although caffeine doesn’t always work for everyone.
I am trying a different prescription that may work for many. It has the least side effects so far for me. I am taking 240 mg of Verapamil or (CALAN) per day which has definitely knocked the headaches out for the last several days. This is a blood pressure medicine and I am hoping this may be the one that does it for me. Others are swearing by it. I still “feel” the sense of the headache so I know I am still in the cycle, but the pain is not really there. I can function normally as well. I may have to increase it just a bit though as I got a headache in the middle of the night as I reached the end of the dose. I run a few hours short and then the headache seems to be waiting for its chance at that point. You know the feeling. Overall, I have had about 1 week of no pain or painkillers. For many sufferers, that’s one less week of daily misery. As most of you know, the sufferers usually tell the doctors what's needed with this one.
I hope this helps, myself included. For you new sufferers, we do understand the crazy bouts you go through.
Ray