Diagnosis: Chronic CH with vestibular issues, chronic migraine
Clusters started: July 2009
WORK IN PROGRESS
My experience with Cluster started just over a year and a half ago. It came up so suddenly that I had very little to go on in terms of what to expect. In fact, it took some time to reach a diagnosis, as is typical it seems, which made it difficult to research or refer to the experience of others. As it turns out, there are not many places to "look up" the experiences of others, which led me to start this site. There are some excellent message boards out there, but even then there is quite an investment of time to learn from those in the know.
It took me a while to realize that my doctors were not the info source I had been led to believe all my life. It seems that when you get into territory that is not as clear cut and that has no specific medication for treatment, their certainty wanes. The are a host of meds that are primarily indicated for other maladies that are "hopeful" therapies for CH, but there doesn't seem to be a consensus on what to provide first. For example, although Verapmil is a first-line medication with proven results, I went through 4 other medication trials before that was prescribed. I was also prescribed a healthy dose of Vicodin for a while which is probably the worse thing to use. Try this, no forget that, try this one, etc. Unfortunately, I've been through all of the meds that can be prescribed for CH and I'm still in pain, if not worse for the wear of trying all those powerful meds. Don't get me wrong, some have helped. Verapamil worked for a while to reduce the number of attacks. Lithium works somewhat to reduce the verocity of attacks. Imitrex injections absolutely works to abort attacks, although I and many others are convinced that it increases the overall number of hits. Oxygen is a helper, although for me it is more of a delay than a true abort, no matter what throughput on the regulator. I have the best mask, medical O2, etc.
My current stance is to be the person with the information. The one who knows what does and doesn't work for me. And you notice I said "for me". That's because we are all different and what works for one may not work at all for others. After a while, I learned some tricks that help me stay fairly even keeled and for the most keeping my hits to below a 9. I eat well most of the time, drink a lot of water, keep my sleep in as normal a cycle as possible, avoid alcohol completely, and keep my coffee down to two cups a day. That's no recipe for success, but I do better that way for whatever reason. I also frequently interact with other CHers which helps my piece of mind.
So here's my timeline of activities leading up to a diagnosis and thereafter.
|Jun 2009||Eye pain and pressure. Visited GP, diagnosed as sinusitis|
|Jul 2009||Worst headache of my life. Trip to ER, CAT scan negative. knocked out with meds then home.|
|Jul 2009||Eye pressure increasing. Referred by GP to Ophthalmologist. Oph sees no issues.|
|Jul 2009||Second, third, and fourth worst headaches of my life. GP Refers to Neurologist.|