HI I am new on here as I have only just found the site (which is fantastic by the way). I have been a sufferer for around 22 years now and hate every second of it. I am going through a very bad bout of it right now and can't wait for the cycle to end.
I have just read on here about the water treatment and i am very willing to try it as nothing has worked up to now.
The question I have is simple.... I don't like drinking water as a rule but do enjoy water mixed with cordial ( blackcurrant or orange). Would adding the cordial affect the treatment or would it still work the same?
With the cordial mixed in I would drink it every half hour as suggested.
Thank you in advance for any and all advice given.
Alan

Hi Alan and welcome,
I'm not sure about adding cordial. But, I'm also a non water
drinker but I've found by adding a squeeze of lemon juice
it's not bad. The trick I found when drinking water is during
an attack is to keep drinking until you abort the beast. Like
everything else it might not work for everyone.

Hoppy.

HI
Thank you for your reply and i will certainly give it ago with the lemon and hope in the meantime someone can confirm either way on the use of cordial..at present during an attack i pop Ibrupohen 800mg every half hour of an attack and chew on either biscuits or mini shredded wheats to ease the pain in my teeth and to try and take my mind of from the pain. This is after 23 years of suffering with this trying all sorts to end this nightmare.

I don't think the water treatment works for every one any way. If that was all it takes then none of us would be here. However it does work for some so always worth a try. You could try it with cordial - what's the worst that could happen.

Have you tried energy drinks. At the very first sign of pain (don't wait till it's full blown), drink one down really fast - as fast as you can. It's the combination of caffiene and taurine in a sudden hit which does the trick. I believe red bull and monster have the right combination. Again, it doesn't work  for everyone but has had a fair amount of success, and a lot of folks here will swear by it.

What else have you tried? Oxygen? Sumatriptan auto injections?  You risk damaging your stomach with too much ibuprofen, which just will not work. Pain meds do not work for primary headaches such as CH. Not even morphine!!! You need a vasoconstrictor such as sumatriptan, as long as you do not have medical reasons for not taking it of course.

HI Maz
Thank you for your comments. I will certainly try the energy drinks as well. I am willing to try any suggestions as after having them for so long now i just got stuck in my ways and accepted that there is nothing i could do to change it. I didn't even start to research it till recently when my new partner suggested that i did. I have had the injections and they worked for a while then stopped working so i stopped them, i have tried oxygen and Lithiam and tonnes of others over the years.
I am seeing a new doctor tomorrow as i have just moved and i will be asking her to look into this for me as i am willing to try any and all forms of possible treatments that may or may not work. once again thank you for your advise.
Alan

Hi Alan

I suggest you give the oxygen another go. If you had it in the past chances are you did'nt use it the right way. Most docs will prescribe 7 or 8 litres per minute ( which just will not work ) unless you tell them different.  You need at least 15 litres or more per minute, and a non rebreather mask. Get either of those wrong and it won't work, but get it right and you'll wonder how you ever survived without it.

CH is caused by a dilated blood vessel pressing on the trigeminal nerve. Pure 02 acts as a vasoconstrictor (as do most of the drugs we use) so takes the pressure off the nerve.
The non rebreather mask ensures that no "room air" gets in and the 02 is pure.

You may hyperventilate, in fact it works better if you do, but thats harmless and the tingling and twitchy effect soon wears off. Personally I don't hyperventilate on 15 litres but it's still enough to kill off a big one in less than 10 mins. Used it twice during last night and both times was asleep again in 1/2 hour. For me, and almost everyone on this site it's a life saver. And because it's not a drug you can use it as often as you need to.

Good luck with your new doc.
Maz.

Wow
I will be telling that to my doctor tomorrow
thank you so much for the advise
Alan

You're very welcome. It breaks my heart to think of people suffering with this huge thing in our heads, and not being offered the right meds.

Ask your doctor to fill in a "HOOF" form. It stands for Home Oxygen ?????? Mine is delivered by DOLBY VIVISOL and is next day delivery. They will even deliver to another address in the UK if you give them a bit of notice, which is great if I want to visit family up north.

I have it set up in the spare bedroom where it's out of the way. I made up the bed and I use that room when I'm in high cycle to give my husband a break. I should add, the quicker you get on it, the better the effect. At the slightest tingle I'm up the stairs. Stay on it for double the time it takes to abort your CH.

My doctors, including my neuro offered me nothing except pain killers for over 5 years. Everything I have, I had to find out for myself and ask for it. And I learned everything on this site, so keep coming back - even if it's just to rant from time to time, which we all do.

Let us know how you get on.
Maz.

HI Maz.
Just had to write and let you know what happened at the doctors yesterday. I printed off the things you had said about Oxygen expecting a fight on my hands as most doctors know nothing about Cluster Headaches.
Well what a surprise i had in store.... I explained that I suffered from Cluster headaches and got an immediate reaction of overjoyment as the doctor is a headache specialist and hasn't had a cluster patient in years and was so excited to be able to help me.... Oxygen is now ordered and being delivered on Tuesday after the bank holiday, She gave me injections which i haven't had for the past 9 years ( i'd forgotten how good they are) she has upped my varapamil as it was on the lowest dosage and has booked me in for an ECG and heart monitor... she phoned me in the afternoon to tell me when the oxygen was being delivered and to apologise for being so excited... i told her I was very excited myself to finally find a doctor that cares and understands.... for the first time in 23 years of these blinding clusters i can see help at hand... Thank you Maz for your very sound advice. Alan x

Hi Alan
I'm so glad you've got the help you need and deserve. Your new doc is a gem. Put her on your christmas list.  ;D

Don't forget you need the correct mask and flow rate. Many people chug down the redbull immediately before going on the 02. Gives the CH a double wammy. You will probably find that the higher dose of verapamil will reduce the frequency and intensity of your attacks anyway, but now you are armed for when the beast manages to sneak one in.

Another tip:- most chemists don't keep the sumatriptan injections in stock because they are expensive, and fairly rare, so when you need them you will have to wait while they get ordered. So, when your cycle eases off carry on collecting them for a while and stockpile a few. This will see you over the "waiting days" if another cycle comes around.

Hope you have many pain free days and nights.
Maz.