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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Been dealing with CH for 15 years
(Message started by: ScottEinDC on Dec 1st, 2005, 9:58pm)

Title: Been dealing with CH for 15 years
Post by ScottEinDC on Dec 1st, 2005, 9:58pm
Hello all,

I've been lurking on the boards for a few days, but thought I'd finally log in and create a user!  

I've been dealing with cluster headaches for 15 years...50% of my life!!!

I recently had a new cycle start, it's been a month so far...and what a month.  They have been more frequent, more regular in their timing and twice as intense as past cycles.  Yikes!!!  

I've been going with one to two CH a day, usually one in the evening, 7-10pm and one in the middle of the night while sleeping...isn't it a great thing waking up with an ice pick gouging your eye!   :P

But in the last week, I've been having more in the morning then the first three weeks of this cycle.

I started getting these while in high school...I got sent to the principals office for laying my head down in class....no one understood and at the time I had no idea what was going on.  One day I had a particularly bad CH and my right eye turned all red and tears just streamed down my face.  "Oh, you have allergies, here take this."  HA!  I wish.

Next week I'm going to have an MRI, after discussing with my doctor, I told that this series of CH were much worse than before...he could tell I was worried this time around.  Hope things go well...hope they find what's supposed to be there...Hi Brain...and not something I don't want!

Well, I look forward to reading more and more and more...and learning tons about this devil!!

Scott
[smiley=hiya.gif]

Title: Re: Been dealing with CH for 15 years
Post by E-Double on Dec 1st, 2005, 10:07pm
Welcome aboard new friend.

Sucks but glad you found us.
This place is a life saver.

Do share all your tricks of the trade.
What has worked.
What has not.
Meds.
Alternatives.
Etc.

Plenty to share and Plenty to learn regardless of how long you have been dealing.

Best,

Eric

Title: Re: Been dealing with CH for 15 years
Post by Jasmyn on Dec 2nd, 2005, 3:20am

on 12/01/05 at 21:58:49, ScottEinDC wrote:
Well, I look forward to reading more and more and more...and learning tons about this devil!!

Scott
[smiley=hiya.gif]


Welcome Scott and that is the right attitude!

This place is the best place to be for support, advise and info.

Jas

Title: Re: Been dealing with CH for 15 years
Post by Sandy_C on Dec 2nd, 2005, 8:26am
Nice to meet you, Scott.  You've come to the right place to get info on CH.  The people on these boards have more combined knowledge and years of experience in dealing with the beast than any medical professional on the planet.  Feel free to just jump right in and ask questions, vent, read and learn.  

We're a crazy family, but we support each other.

Sandy

Title: Re: Been dealing with CH for 15 years
Post by MJ on Dec 3rd, 2005, 12:00am

Give me a shout if you find where they keep the cookies.

Title: Re: Been dealing with CH for 15 years
Post by kayarr on Dec 3rd, 2005, 12:07am
MJ,
*psssssssstt..........come mer*

*there's cookies on my counter always....what kind of supporter is without?*

Title: Re: Been dealing with CH for 15 years
Post by lionsound on Dec 3rd, 2005, 7:58am
Welcome Scott :)
Sorry you are suffering right now. Mine started before, but I remember having the exact same thing happen to me in highschool.

Please let us know what happens with your MRI.

Have you ever tried Oxygen?

Be well and PF,
lionsound

Title: Re: Been dealing with CH for 15 years
Post by BarbaraD on Dec 3rd, 2005, 9:07am
Welcome Scott,

Glad you found us. Rant, rave, grab the cookies, whatever feels right ... we're here to support you. We KNOW how you feel (we've been there, probably done that!).

Read read read.... O2 is great, black coffee at the onset works for me most of the time (nothing works ALL the time). We've all gone thru thousands of meds till we hit on the "right" one for "us" (one size does NOT fit all).

Again welcome to Clusterville.

Hugs BD

Title: Re: Been dealing with CH for 15 years
Post by ScottEinDC on Dec 3rd, 2005, 9:15am

on 12/01/05 at 22:07:37, E-Double wrote:
Welcome aboard new friend.

Sucks but glad you found us.
This place is a life saver.

Do share all your tricks of the trade.
What has worked.
What has not.
Meds.
Alternatives.
Etc.

Plenty to share and Plenty to learn regardless of how long you have been dealing.

Best,

Eric


I haven't really had anything work to help.  Most recently my Dr. has given me several meds to try.  Imitrex being one of them.  Frova (??)  And two anothers I can't remember the names of right now.  I didn't notice anything with the Imitrex.  The Frova seemed to lower the intensity of the CH, but what I think was very interesting....I didn't have a CH for about 24 hours after...which is different from my normal schedule of two a day...So that was interesting...and I've made a note for my next visit with the Dr.  

One of the other two meds will be completely out for me...it completely messed me up...dizzy/fatigue/confusion...at least with the CH now, when it's done, I can resume normal functions...this knocked me out for four hours....I could barely talk.  

There is one more to try and I'm just waiting for the right time.

Outside of that, the only thing I really do to "help" is, for the midnight visits, KI get up, walk around, sit on the cold toilet, apply pressure to the location of the CH (about an inch behind the right eye/temple) and when it seems to have peaked, apply icepack...it does nothing during the CH, but after it helps me resume much quicker to normal, and in the case of the late night visits, I can get back to sleep much faster.

Haven't tried anything else.  I've been reading lots of about O2 on the boards.  We'll see what happens after the MRI and my follow up visit with Dr.

Title: Re: Been dealing with CH for 15 years
Post by E-Double on Dec 3rd, 2005, 9:29am
Was the imitrex injection, spray or pill?
The pills seems worthless for us. The injections work super fast for many.
As far as frova goes, some have found it helpful but like you said not quick enough. The 24 hr. break from CH after Frova appears common due to the half life of the med. It stays in system longer

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!


If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: Been dealing with CH for 15 years
Post by lionsound on Dec 3rd, 2005, 9:32am
Scott,
are you seeing a neurologist?

And please don't wait to try the O2...ask your doc for a script. It looks large, but It is so benign, yet can knock the beast away. if it works for you, you may not need much else. You could be enjoying Pain free much sooner .



Title: Re: Been dealing with CH for 15 years
Post by ScottEinDC on Dec 3rd, 2005, 10:04am

on 12/03/05 at 09:32:26, lionsound wrote:
Scott,
are you seeing a neurologist?



No, why?


Title: Re: Been dealing with CH for 15 years
Post by ScottEinDC on Dec 3rd, 2005, 10:07am

on 12/03/05 at 09:29:07, E-Double wrote:
Was the imitrex injection, spray or pill?
The pills seems worthless for us. The injections work super fast for many.
As far as frova goes, some have found it helpful but like you said not quick enough. The 24 hr. break from CH after Frova appears common due to the half life of the med. It stays in system longer



The imitrex was the pill...and how's this for sucky...had to try it Thanksgiving evening with a house full of people...everyone is all sympathy and the party has a bit of a downer....make me very angry.

Grrrrr!

Do we know of anyone using Frova for more preventative, instead of abortive?  I'm going to talk to Dr. about it on the next visit.

Thanks for the rest of the information.


Title: Re: Been dealing with CH for 15 years
Post by lionsound on Dec 3rd, 2005, 1:42pm

on 12/03/05 at 10:04:35, ScottEinDC wrote:
No, why?

Sounds to me like your doc is trying and falling short due to lack of knowledge.

A good neurologist/headache specialist is more up to date on current CH treatments and info and usually will serve you better. However, just because a neuro or any doc, claims to know something about headaches/CH doesn't make them a specialist. You need to ask them specifically if they have treated CH patients before and how many they have treated.

Some people here are just as content with their GP because they are knowlegdeable and helpful. So it's up to you.

YOU DESERVE UP TO DATE TREATMENT! :)

Take care,
lionsound

edit to add:
Scott, please be very careful ...mixing triptans within 24 hours of each other can be very dangerous.

Title: Re: Been dealing with CH for 15 years
Post by Kate in Oz on Dec 4th, 2005, 6:12am
Hey Scott,

Welcome.  

I'd have to agree about seeing a neuro and especially someone who knows about CH.

My GP (many years back) was doling out the pills, marking off the checklist - and stuffing up my life!!  The cycle lasted 6 months!!  FINALLY he referred me to a neuro who gave me something that worked straight away!  Of course that drug (Epalim - anti seizure med) no longer works but I wasted a lot of time on a GP who tried and tried but was really not much help at all.

Wishing you all the best and hope you get a break soon,

Kate

P.S. I agree with the others who suggest the 02 - its well worth a try and no side effects!!

Title: Re: Been dealing with CH for 15 years
Post by Beastfodder on Dec 6th, 2005, 10:51am
Hi Scott,

Welcome aboard.   With any luck the next 15 years will be a whole lot easier than your last - at least as far as CH is concerned.

Frova has been recommended as an abortive to me - and with the half life it's a useful tool for a good night's sleep, but I can't comment on using it.  

O2 I can comment on - try it.  No overhead on the body and it works well with a good mask.  

The reason I never got round to trying Frova - is that clusterbusters absolutely sorted my CH out this year.

Suspect I'll be one of many here sending very best wishes to all concerned for their time and help in helping rid me of  the cycle this year.

Keep reading, keep a diary and keep in touch with us here,

Best of luck  

       

Title: Re: Been dealing with CH for 15 years
Post by burnt-toast on Dec 9th, 2005, 8:35am
Welcome abord.

Keep us up to date on the results of your tests.

Tom



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