hello my name is kizito my friends call me Kay for shortand this is my first post.just this morning i was diagnosed with CH.i remember about 10 yrs ago when i was about 17 i had a series of very bad headaches,told mum about it and she said it was a migraine,the pain was so intense that i ended up seeing the doctor,i guess i was in a hurry to get some pills to cure me that i answered "yes" to most of his questions one of which was "if i saw flashes of light before my attack?" the truth was i didnt have those flashes,although i still wanted to be alone in a dark room during the attack...anyway 10 yrs has passed since then and i'm a grown man now. just last tuesday i woke from my sleep with a splitting headache and i thought i was going to die...lucky for me i had some painkillers at home which i took immediately,after about 2hrs later the pain was gone and i went back to sleep..next day same time again the headache came back and my mind flashed back to 10yrs ago and i was like "its this migraine again". during the day i popped down to the pharmacy,got some migraine pills and went home thinking i had everything under control.the next time this headache came back i was actually looking forward to it so i could "kill" it with my new pills but to my utter dismay the pills had little effect. all this while i still thought it was migraine so i decided to go on youtube to check it out.i noticed that people who suffered migraine saw an "aura" before their attack,i know that wasnt my case but i was still convinced it was migraine(because according to wikipedia migraine meant half skull and my headaches happened only on one side). the straw the that broke the camel's back was last night when i awoken by our dear friend once again, i did everything:i poured water on my head(still there), i put ice over my eye(no way),i layed down on my back(nothing),i laid on my side(nothing) and by now i had taken about 4 or 5 tablets of ibuprofen extra.after a couple of hours the pain subsided but i had made up my mind i was going to see the doctor(i was beginning to think i had some kind of tumor in my brain). so this morning i rang up my GP made and an appointment to see him. when i saw him i described everything to him and after consulting his computer and he told me that all the symptoms pointed to a type of headache called...Cluster headache and that he was going to refer me to a neurologist, i'm yet to see the neurologist but i have since decided to learn a bit more about this CH.i have seen videos on youtube and other info on the internet.to be honest i'm quite glad i'm not the only one and there's actually loads of us...i hope i didnt bore you all with my story,i'm looking forward to interacting with you guys to learn more about "the beast', i know he will come again tonight and i'm scared to fall asleep but my body is already so tired.see you all soon  :)

Welcome to the board. so glad you've already got a referral to a neuro, an important first step. Try and locate a "Headache Specialist Neurologist" as headaches are a complicated field and an accurate diagnosis is critical to an effective treatment regimen.

For now, can the OTC meds, especially the ibuprofen. CH will run it's course no matter how many over the counter meds you take. The pain of CH does not respond to OTC's and you take a risk of liver, kidney, stomach, heart etc. trouble with misuse/overuse of the OTC meds. Our experience has shown that even hard core narcotics just won't help and their risks far outweigh the minimal benefits.

Short term suggestions to deal with the pain of an attack. Keep some energy drinks on hand, rock star, red bull, any containing the combo of caffiene and taurine. Chugged as fast as you can, at the first sign of an attack, many can abort or really reduce an attack. Ice cold air inhaled through the nostril on the affected side. It will ratchet my pain level down several clicks, my favorite is the car air conditioner vent as it blows pretty cold. Since you're geting hit at night, consider melatonin, an OTC sleep aid here in the states, start with 9 mg about 30 minutes before bedtime, will prevent the night time wake up hits for some. Strong black coffee or vigorous exercise will help reduce the pain for many.These are all short term fixes until you can get in to see the neuro. Did your GP give you anything????

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Take a minute and read this link. If you do have CH, 02 will be your new best friend. My abort times run 6-8 minutes. Cheap, no side efefcts, fast, not much to dislike. Certainly something you need to insist your neuro prescribe for you.

Welcome to the board, read like crazy. An educated CH'er hurts a lot less.

Joe

Hey Kay,

Joe just gave you a great condensed intro there - worth reading a few times and memorizing.

Many of us have found very significant relief thru the info and advice found here, so dig in.  8-)

Hello and Welcome to Clusterville

  Ditto the above.

   Read, read, read . . . ask any questions you may have.

   Start a headache journal noting time of attack, duration, pain level (use "the kip scale" . . link on left), possible triggers (alcohol is MAJOR trigger for most of us).  Take your journal and a copy of the kip scale to your doc/neuro appt.

   If you have CH . . . you've landed in the right place.  This family saved my life.

    Be Safe,   PFDANs

       Richard

Thanks a lot guys...its good to talk to ppl who know what i'm going thru...last night was hell once again.as i'm writing this now,i'm approaching the final stages of the attack which started around 4a.m this morning.
Giuseppe, my doc gave me some Co-codamol(paracetamol + codeine) tablets,some naprosyn(which is supposed to help with the stiffness in the neck and joints) and some nasonex which is a nasal spray to help relieve the blockage in the nose.
I'm tempted to go with the redbull but my doc said i should try and stay away from caffeine.i'll see if i can get some sleeping pills. i cant wait to see the neuro. The only good thing that has so far come out of this(i know it sounds silly) is that i have since stopped smoking cos it seemed to trigger my attacks. i really appreciate all the feedback guys. one love

From looking at the advice from your GP, I strongly suggest you see a neurologist who is a headach specialist.

Co-codamol will not touch the pain of a CH.

As to avoiding caffeine from a Red Bull, caffeine is a vasoconstrictor (just like oxygen) and the taurine is a calcium channel antagonist (just like verapamil), so there is a clear scientific basis as to why it can help with a CH.

With the forums we've got access to the collective experience of many people who have had CHs for years, consulted countless neurologists and learned a lot about what does work and what doesn't when it comes to treating CHs.

Double dittos everything above...and underscore get O2 right away. Or as right away as you can. Do read the link at the left, ask questions if you are unclear, and insist on the right equipment for the proper flow rates. Good luck and God bless. lance

Do NOT avoid caffiene! That advice is for migrainers, NOT ch'ers. We use caffiene as a treatment for CH. Many chug strong coffee to deal with the shadows, and as I've mentioned, the energy drinks, which combine caffiene and taurine, are an effective abortive. Your doc knows NOTHING about CH. Narcotic pain meds are the very last thing he should be prescribing for long term pain issues. The faster you can get to the neuro, the better. ;)

Joe

thanks Joe and everyone else for all the advice...i've just gone and bought 24 cans of redbull.for some reason the waiting list to see the neuro is so long here in Cardiff, Wales, UK. i'm thinking of popping back to see the doc again to get him to prescribe some o2. once again thanks

If you could get 02 prescribed now that would be awesome~! It'll make the wait much easier to bear.

Joe

Hi Kay

Hopefully, by now, you'll have seen that Neuro and got some appropriate medication. Because sure as hell, your GP doesn't seem to have much of a clue. Those painkillers might just help with the shadow headaches, but they won't touch the CH's. And all the knowledgeable advice you get will confirm that contrary to your doctors advice, caffeine is a big help.
If you aint seen the Neuro, I hope you've done your diary and got all the information you can, off this and other sites. I spent many years un diagnosed, once the Neuro at pinderfields got on board, my life got a lot better. It was only a recent episode, the worst I've ever had, that found me here on this site. The advice I got was superb. I got re-refered to a Neuro and by taking with me information drawn from this site, I was able to get some sense. I was prescribed O2. I've had one minor episode since and I can now confirm to all that I'm in full agreement, the O2, is the Dogs B#**#$^s and I don't use phrases like that loosely.
You may have to push a little Kay, I did, but it worked because the Neuro had knowledge of the treatment and wasn't totally against the option.
Just Remember Kay, its you're body, so you will find out what works best for you. It's also your NHS so make them help you, no matter how negative they come across.

All the very best and may you be PF

Andrew