Hi all,

I've just been diagnosed a Clusterhead.  Had a bout of sinusitis which went away with antibiotics, but the headaches decided to stay.
The best way for me to describe it is that it is like someone is pinching my eyeball while simultaneously driving a spike through my temple and the top of my skull.
I have never experienced pain like this in my life -- and I thought I was being a bit of a wussy, until I was diagnosed and started to look up some info.  I am not feeling optimistic.  I have had these headaches every day for the last 2 weeks and spent 4 wonderful days in hospital in a foreign country (Slovakia, but I'm Canadian) which doesn't have the kind of standards that I am used to or expect from my healthcare providers. Although, I must say that the doctors and nurses were excellent.

My question is this: what are the statistical possibilities of this being a one-off (please God), lasting longer than a few weeks, being a chronic problem, or going into remission in the short term.  I have seen many people describe individual behaviours of their attacks, but haven't seen any numbers on "typical" Cluster behaviour.

Any info would be appreciated,
Thanks,
Shawnko
 

Hi Shawnko

About 80% of people are episodic, lasting from a few weeks to a few months, with remission periods that can vary between months to years. Some people can go from being episodic to chronic or the other way.

You've not mentioned anything about the treatment you've been getting. Have you been given a preventive (prednisione / verapamil / lithium / topomax (or similar)) or an abortive (oxygen / imitrex)?

Let us know more about things like this and we can suggest things to help.

1. Med literature on projeting future develoment/changes in CH have almost nothing to offer. Suggest you not focus on such questions.

2. When you write about meds, use their chemical names, not brand names. This will give us a shared language.

3. You don't mention your evaluation of the docs you've seen: skilled, good knowledge, etc. I'd like to send you a long (15pg) evaluation of current therapies  but it's too large for this site's program to handle. If you will send me your e-mail address I can get it to you. It will give you a good tool to discuss treatment options with your docs.

Thanks for the websites and advice -- much appreciated!

My email should now be visible so if you want to send files too large for the site it should be ok now.  The drug that I am taking is called Indometacin 100, that is the only available description on the package. It is made by Galvex.

As for my doctor(s) -- so far brilliant.  The neurologist seems to have her ducks in a row and knows what she is talking about.  Her diagnosis was confirmed by the head of neurology at the local hospital -- and both were direct and honest and answered all the questions I had at the time.
Unfortunately, at the time I was very ignorant of my own condition and didn't know the right questions to ask.
I'm still in the info gathering stage so I will read with interest the info you send.

Thanks again for the replies and advice/info