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
 

I think you'll be happy to know that episodic CH is the most common. Something like a month or 2 out of the year with CH, then the rest of the time in remission.

There's room for optimism! Many of us have found info and advice right here on this site that has enabled us to gain very significant relief, and more and more that means without drugs.

You came to the right place Shawnko, keep hangin' round.  :)

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.

Thanks guys for the responses! As for treatment -- I spent 4 days in hospital in the neurology ward and was given some drops (useless) and injections (awesome) for the pain.  Unfortunately the names of the drugs were in Slovak and meant nothing to me.
When I was given my walking papers the doctor gave me a prescription for Indometacin which has been helpful.  I will go back to the doctor again in 2 weeks when the medication is due to finish.  As for the treatments you mentioned, I have no idea about their availability in this country.  Even oxygen might be tricky for me to get.  Obviously I will be reading more and have a bunch of informed questions when I visit the doctor next time, but as this was my first attack, I really had no idea what to ask.

Once again, thanks for the info and support -- this has probably been the worst two weeks of my life and finding this page has been a god-send!

Shawnko

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.

I don't know if this will help you or not

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Although this is from the US embassy, it may contain some info that would help.

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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

Shawnko -- those injections you received that worked so well were probably sumatriptan (AKA imitrex,, imigran).

They are super effective, but also controversial,, as some feel that they cause rebounds, some experience unpleasant side effects, and they are expensive.

Personally I've used them a lot in past years without side effects, but since finding out here about high flow 100% O2 I've switched to it as a first line abortive, reserving sumatriptan as a practically guaranteed to work back up abortive. It's important to still be on a preventative, with clusterbusting being an alternative that they're not dispensing at the doctors office yet: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hey Shawnko

You're a long way from Canada…

Take a look at the following link.  It's the EFNS (European Federation of Neurological Societies) guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

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These recommended treatments were developed by a task force comprised of the brightest minds in the field of neurology specializing in the treatment of patients with cluster headache.  The neurologists in this task force see more CH'ers in a week than most neurologists see in a lifetime. 

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You'll notice they list oxygen therapy at 15 liters/minute at the top of the list of recommended acute treatments above as an abortive for cluster headache.

Take care,

V/R, Batch