Hello everyone,

My fiance has been suffering from cluster headaches for over 10 years, she was only diagnosed on her last cycle(3 years ago) before that all attacks were called "Migraines". She started this most recent cycle about 6 weeks ago. It came slow with a lot of shadows at first, then a few attacks a day, then days where it was easier to count the few gaps of time when she wasn't in an attack, and now they seem to be slowing down a bit.

My question to you all is:

Is this common? A 3 year gap between cycles. Starting out slow(few per day), Peaking (All Day) and then slowing down(Few Per day)

Also these cycles are always a few/couple years apart but ALWAYS in the late winter/early spring. Is this also common?

Thanks for your help, you are all heroes, watching my fiance go thru an attack is heartbreaking. You all deserve recognition.

Hello and welcome. Sorry that your fiance` has this wretched condition but I'm delighted to know that she has you to look out for her.

Ch is an odd bird... some folks can set their clocks and calendars to their cycles, yet for others it follows a pattern for a little while only to change.

The most important thing that we as suffers can do is to always be prepared. Read much of everything on this board follow the links on the left to find out more about o2, talk to a headache specialist or neurologist who knows about CH.

Arm yourself with a defense that works for you. For many those things are different... for most O2 works to abort if used properly.

Soon others will follow to give better advice than I can ever hope to give.

I hope your fiance finds relief soon.

with warm regards,
Tony

Artonio wrote on Mar 11^th, 2009 at 11:57pm:

Read much of everything on this board follow the links on the left to find out more about o2, talk to a headache specialist or neurologist who knows about CH.

Thanks for the suggestions and encouragement. We are from a small town in northern Canada so "Specialists" are few and far between. To add to the frustration the doctor she is seeing is stubborn and not open to her suggestions on O2.(She managed to get some from a doc in the ER during her worst attack this cycle. and it did wonders). She is only taking sedatives now(to allow to sleep thru shadows and short attacks and get a full night sleep) Right now we are just waiting for the end of the cycle.

Thanks again,
Kevin

I've heard stories of how some folks who could not get medical grade 02 went out and bought their own welders 02 tank... then rigged it with the appropriate regulators, found the appropriate masks, tubing and attachments... and found many happy days of relief.

with warm regards,
Tony

Do her a favor. Get thee to the welders supply outfit nearest thee, and quickly! Renteth thee or purchaseth yea a tank full of O2, as well as a regulator and high-flow valve. On the Internet, checketh thee out a place to obtain the OptiMask and puchase one of same forthwith. Presenteth all to thine girlfriend fair, and rejoice in happiness forever.
Loseth soforth, forever and henceforth, the doctor who won't provide a prescription for oxygen. Then, tell him/her why!

FixMyBee - we have some folks in Canada that may be help to refer you to a good MD. Also check out the Ouch Website as there is plenty of information there too that you can share with her doctor.

Hello FixMyBee!

Everything that you posted about your fiance is completely the norm for CH.

Mine come on as shadows, develope into full throttle "Kick My Ass" hits 5-6 times a day hits with shadows in between, and then when I'm to the point of hopelessness the beast decides "WHOO HOO..I messed her up really good, now on to someone else!!"

Get her on here and have her talk to us also so she will be with people who are very well educated and compassionate....something most docs aren't!

What meds is she on right now?

I'm a seasonal boomer, which means I have my "yearly" cycles either in late fall going into winter, or winter going into spring.

I've had periods a couple of times where I hadn't had a cycle in two years....unfortunately for most of us they return  [smiley=cry.gif]

It's a shitty card she was dealt...BUT, thankfully for episodic sufferers the cycle ends and it's back to living life again.

Glad to meet you. Stick around, read, and talk to us. This site has been a lifesaver for me!

Kimmie

Kimmie wrote on Mar 23^rd, 2009 at 3:57pm:

It's a shitty card she was dealt...BUT, thankfully for episodic sufferers the cycle ends and it's back to living life again.

Kimmie's quote is honestly how you have to look at it if you are episodic; otherwise it can get a little too much for you.  Thanks Kimmie!

if you can't buy a tank outright you can rent one. some doctors won't prescribe o2. the welders o2 bypasses pleading with the doctors. many of us use it and it's perfectly safe ;)

Perfectly normal.  I'm a springtime guy, but not every year.  I can relate to the small town doctor issue,  shop for another GP if this guy is not giving the help needed.  A lot of us had been misdiagnosed with migraines, and that migraine dope is powerful and totally ineffective.  Compared to that, I don't understand how a doc might have concerns about oxygen which can be remarkably effective and has minor side effects.

I hope that you can get some relief before the cycle is over.    

Yep... what everyone else said.  I have gone 4 years in between cycles a couple of times.   THis year I am pretty sure I was starting a cycle in March ( the first week in March is when a cycle when come if it comes that year) but was able to so far, despite strong shadowing that first week,  prevent it using RC Seeds.  

Also my cycles are typically brutal in the beginning and wane over time.  

Maybe some one has already pointed you to the OUCH Website ( look at the buttons to your left.  You can find a link to Doctors who have experience with Clusters.  If not,  as someone mentioned there are a couple of members here from Canada - Barry Sword is one- that is from Canada.  Hopefully he'll chime in or you could PM him .

Good luck to you and your fiance

Kelly

I just want to pat you on the back for being a great supporter. clusterheads love our supporters cause we are an odd bunch to love.
well at least i am.
seriously learn everything you can knowledge is the best defense and learn how to support.
ouch website and here have some family and supporter help available.
gotta love the supporters  they rock!!!!!!! [smiley=bow.gif]