hi people, my names jamie, im 23 and living in portsmouth uk.
hi have been suffering from CH for a while now and normally get them twice a year. im currently suffering and have been since the end of july. every day, twice to three times a day.
the pain is unbearable. its so hard to describe to people what its like, especialy when i get an attack at work.
im currently on half securon x3 a night but they dont seem to do anything. back to the doctors tomorrow for a chat to him about upping the dosage.
the injections work amazingly well and would recommend them to any sufferer. trouble is, i only got given 2! and when suffering 2 headaches a day for weeks at a time, you can imagine the results.
has anyone tried the oxygen? does it work?
i get days where i am in so much agony i feel like banging my messed up head into a wall. i cant sleep. im afraid to sleep because i wake up with another attack.
id really appreciate any help and advice.
thanks for being here for me

best wishes
jamie

We've all been there. Welcome, by the way, and first off please spend as much time cruising this site as you can spare. Tons of good info. Start here:

1. Preventatives: research here and find those that have worked for others-verapamil, lithium, topamax, cafergot, amitriptyline, sometimes a prednisdone taper, melatonin, kudzu, Batch's ph diet...almost all of these can work but keep in mind the effective dosage range is higher for us.

2. Abortives: O2, O2, O2...it is the best and fastest abortive. Read the link to the left. You need much higher flow rates than respiratory care provides, beginning at 25lpm is best. Energy drinks with a combo of caffeine and taurine at first hint of a hit, imitrex/imigran injections (see imitrex tip for stretching out your supply), migranal nasal spray. Keep in minds most pills are much too slow to metabolize to do us any good.

3. A willingness to keep a diary of your hits, and a record of what you try and its effectiveness. There's so much you can do. If I've left anything out somoene will come along and help.

4. Don't give up; don't give in; don't quit lookin' for a weapon to kill the beast. In other words, work hard and maintain your belief this can be tamed.

God bless! lance

I'm with Lance. 32 year sufferer here and nothing comes close to oxygen for its ease of use, speed of abort, and lack of any side effects or medication "hang overs"! I can abort an attack in 6-8 minutes just by huffing on pure oxygen. Beats the heck out of the old 90 minute rides I used to take. It has almost eliminated my use of imitrex. Read the oxygen info link on the left as most docs do not know how we use it and will give you nasal canulas, re breather masks, low flow rate regulators, all guarantee failure!

Joe

Hi Jamie,

I'm 26 and just started suffering a little over 4 weeks ago. Pretty sure it's CH but not been properly diagnosed yet. How far have you got with your diagnosis (neurologists, scans etc.)? So far I'm just dealing with my GP who I'm seeing tomorrow but at least this time I'm armed with a lot more info from these nice people.

Hopefully I'll find out a bit more about the availability of o2 too.

I know how hard it is to get people to understand what you're going through. Keep on at your doctor and let's see if we can get some o2!

Hi Jamie!

Not only does o2 work - it works great!!!!
Please talk to your doc ASAP about getting it.

Likewise please talk to your doc about a preventative - 2-3 hits per day for over a month now?  Yuck-o.

You can get some relief - please don't give up!!!

Hi Jamie,

What the others said about O2, plus please check out the imitrex tip, which instructs how to abort 2 to 3 attacks with one 6 mg injector's worth: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi everyone. Firstly a big thankyou to you all for replying to me.
I went to see my doctor today and he is arranging for an oxygen tank to be sent to me. He has also upped the dosage of the preventatives. Fingers crossed it will work for me.
I saw a neurologist at the start of the year and had a brain scan to rule out anything else. I'm pleased to say that nothing showed up (tumours etc) and they have confirmed it's cluster headaches.
For anyone who has yet to see a neurologist, I would highly recommend you do. They were fantastic with me and I have been booked in for another appointment in November to see how I'm getting on.
Thankyou once again for all your support.
Jamie

Jaime

so glad that you are getting help - just reminding you that when you order your oxygen you want to make sure that the regulator puts out at least 15 liters per minute and that you get a non-rebreather mask with it. The O2 link on the left gives the needed details. I have often had to tell my docs exactly what was needed and this site has great info in that regard.

Wishing you well on the O2 and many many many PF days and nights.