Sorry, I'm not advocating hurting ones-self to relieve pain, rather trying to figure what the body is doing physically that may help in treatment.

Cheers,

Hi DArcy!  Welcome to your 2nd home and 2nd family.  I'm glad you finally found us.  I went 12 years without a proper DX.  It's getting better though.  You and I are the exception these days.  Some luck (?) girl the other day had her first attack and was on this site in two days.

It's really important to get a proper diagnosis and rule out anything life threatening first.  But it does sould like you've won the wrong lottery.  What tests have you had done?  MRI?  CatScan?

What meds have you tried in the past.  There are some very effective treatments out there.  

I use 100% Oxygen at 15lpm as my primary abortive.  Knocks the beast out in 10-15 minutes if I get on it quick enough.  I back that up with energy drinks during the day to keep reattacks away.  If that fails, and it does occasionally, I fall back on Imitrex injection.  Imitrex hasn't let me down yet

The other thing you'll want to look into is a good preventative medication.  Verapamil worked wonders for my last cycle knocking out 90% of my attacks leaving O2 and just a handful of Imitrex injections to mop up the rest.

This combination really gave me my life back.

Unfortunately what works for some of us doesn't work for all.  We're all different and your mileage will vary.  So your best bet is self education.  The more you know about treatments and medications available the better you'll be able to work with your Dr to find that magic combination that works for you.

Here are some links to get you started:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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So, join OUCH-US and read, read, read.  Then come back and ask all the questions you want.  There is a lot of experience with CH in this community and we're all just dying to share it with you.

Good luck...

-Dennis-

edited to add: I do a lot of things to distract my mind from the pain.  However I've never found that hurting myself was a good way to go.

Thanks all,   Jean I'll try out the energy drink thing...as far as Ice, well I think I'll stay away from that.  I live in Northern Ontario, and tried jammin' my head in a snow bank, man did I regret that, 2x the pain in seconds.

DennisMI045 I'm waiting for the neurologist to respond to my family doc with a date.  I've had 2 CatScans, and numerous xrays, as I ran to walk in clinicks, off hours.  They always thought it was sinus problems, but couldn't see anything in the above tests.  Then the Docs listened (not hospital docs, or walk ins, I think they thought I was seeking drugs or something) when I said, the pain is..well you all know, and I explained where the pain was and the freequency, both my family doc, and the Ears Nose and Throat Specialist n(who didn't see anything) talked about Cluster headaches...and hear I am.

I have not tried any drugs or o2 yet, and you all know pain killers don't work.  One Doc gave me Percs once, I sure was high, but still full of pain, that was a terrible experience.  Sorry for rambling but a bit of weight off my shoulders explaining this to folks who really understand.  Hopefully by this fall, that's usually when mine begin,  I'll be rambling about success stories.

Welcome to Clusterville. The one thing that's consistant around here is that we're all different... heat/cold is the one thing that's about 50/50 split. Whatever works for YOU do it.

Drinking is pretty well a "no-no" while in cycle (some of us it doesn't bother, but for the most part - stay away from alcohol during cycle).

Energy drinks at the first sign of a hit will "sometimes" kill it. O2 for "most" of us is our first line of defense.

In an "emergency" (when I'm out without meds or O2 - which is not often) I down 3 Excedrin ES and some strong coffee (or a Red Bull), BUT don't do this often as the Excedrin can cause rebounds.

As to hurting yourself.... this has happened to a number of us in the past (and present). I've come up with bruises that I couldn't explain (don't remember how they got there - some there was no way - how do you get a bruise UNDER your arm for goodness sakes?), but during a hit I do get a little violent at times. Can't say I've ever had it divert the pain. Have had the thought that if I broke my toe with a hammer it Might. (never did it, but thought about it). 

Stick around, tell us about yourself, ask questions. We're here to support and help in any way we can. Again, welcome ...

Hugs BD

Hi D'Arcy and welcome,

don't apologise  for'going on' I think we all know that euphoric feeling of finally being diagnosed - A bit like that epitaph on the gravestone  - 'I told you I was sick'  - and also finding this site.

Just the realization that it isn't all in the mind and that there are lots of us out there fighting just the same battle.

I went for 9 years before the Dr confirmed CH. Used Imitrex in the past but did suffer from rebounds. Tried some other preventatives but they didn't work.  Didn't get round to tryng  O2 as an abortive because I found that Melatonin worked for me - this cycle and last one.

As has been said we all vary in our symptoms and reaction to different meds etc. here's hoping you find something that works for you. In the meantime take the advice here to learn and arm yourself against the beast.

Regards & PF days ( and this is just the place to rant )

Melvyn

Hi D'arcy,

Yes most of us prefer to be alone when we battle the beast - and I'm no exception. I usually sit in the conservatory - or kneel in the dining room and bang my head on the floor - when it gets up towards a 9 or 10.

The fact is tho' that we do get through them. The knowledge that we will win somehow gets us through the hits - don't you think?

Best of luck with your neuro - make sure you read lots and print out the info. Some neuro's are great and well up on CH but, sadly it appears that some are not so good.

regards & PF days,

Melvyn

Yeah!    Glad you found something to help!    


PF wishes!

Jeannie

Nope not chronic by US standards. Get the 02 with a high flow regulator, then you can adjust the flow rate up to the recommended level. You will find between the 02 and the caffeine you wont need the imitrex and will be able to save it for the bad ones....usually at night.
   Call the doc and see if they can change the imitrex to the injectable, but try the pills in case they work. Remember it takes some time for the triptan in pill form to reach theraputic levels so hit the caffeine and 02 till the pill kicks in. I hope that makes sense. I should have put an eh or two in there....eh?
all the best
thebb

I assume you have the 100mg. Yes it works like that, no I wouldn't do it nightly unless there were no choice. It is an abortive not a prevent. But sometimes ya gotsta do what ya gotsta. Try melatonin over the counter for the nighttime hits. 3 to 9mg. It works for many of us. Use the trex sparingly it is known to cause rebound headaches.
all the best
thebb
Never mix triptans, like taking frova with imitrex or relpax.
it is a bad bad thing indeed

My heart goes out to you.  Fortunately I was diagnosed correctly immediately but for abortive treatment a different story.  I am on my 4th neurologist.  I am too many meds for preventative and who knows if they work, but thus far am chicken to taper off all.  But for abortive Imitrex or Zomig nasal spray work, but both are expensive, but I think you said you are in Canada so if your MD would prescribe that would not be an issue.  Also O2 is critical.  You do need a regulator for at least 15L per minute 25L would be better.  If I am awakened with a 8-10 and are able to use an Imitrex or Zomig Spray and get on O2 I still have a good chance to abort fairly quickly.  My problem right now is I have a concentrator at home and not O2 tanks so I am not getting near enought O2 so it takes longer.  With the O2 from the tanks I can abort usually in 10-15 minutes, but with the concentrator it does take longer due to lower flow rate and lower % of O2.  As everyone has and will say what works for one want work for another, but I think most everyone does agree O2 has the highest % of abortive success.  Coffee, red bull etc. do help, but probably the biggest point to remember "don't try and be a hero" action is critical the sooner you attack the greater rate of success in aborting the attack in the shortest amount of time.  If you get O2 and you are questioning if it is a hit the maybe you just get on the O2 and nothing else and see it that alone works.  If if wasn't a hit, what the heck, O2 isn't going to hurt you.  I hope this helps and God Bless You.  Wishbone.

If the shadows start getting heavy - hit the O2 for a while. That will sometimes abort them... Won't hurt you.

Beer????  Oh yeah ...have one for me too.....   and a glass of RED wine while you're at it...   (Geezzz I've got to get some caffeine and some O2 down -- that hurts to THINK about it!!!)

Hugs BD

Hi Barry, good to meet you.  During this time of the occassional headache and not the crazy 6 to 10 a day I've got the opportunity to try a few methods.  Haven't had a HA in a while, but I've been chugging the redbull at the first signs.  The neuro here in sudbury is too busy, I've got a contact for a HA specialist in Ottawa (were my family is) so I'm going to try to hook up out there and hopefully find the proper "coctail".  I would just really prefer to deal with somebody familiar with CH's. 

I may call on you (if you don't mind) if I can't get in with a specialist?  Possible your Neuro may have some info?  I really appreciate the offer of help...CHeers!

A good friend of mine building a log cabin lives down your way, beautiful country.

D'Arcy