Hi there, my names Darren, 41 and from London.

Been suffering in silence for over 15 years with no medication and have been recently diagnosed with CH.

I'm 3 weeks into my cycle now, attacks start at around midnight and last 3/4 to an hour and I normally just sit them out, head in hands, groaning and pacing the room. I discovered only yesterday that alcohol is a major trigger for me after having a bottle of beer after not having any since the start of my cycle - had the mother of all CH's last night (over 4 hours of intense stabbing in the left eye socket) and eventually falling asleep totally exhausted.

I and have my first appointment with a specialist and apparent sufferer on Monday and I'm hoping I'll come away with plenty in my armoury to battle the beast. The only medication i have tried so far has been Sumatriptan in tablet form - Not so good as my attacks awake me from my sleep and the tablet just does'nt get there quick enough although it does cut it down to half an hour.

I see that O2 is a must - will have to make some enquiries about some.


So glad i found this place.

Hi Darren it's nice to meet you. I'm glad you finally found us, typical bloody male - just WOULDN'T ask directions would you?! sheesh!

Read, ask questions, we'll help all we can and get you ready for next week with a vengeance. Where are you being seen?

Helen

Thanks for the welcome.

Heh, your right there, typical male. ;D

I tells ya i've learnt a whole load this evening and the printer has been working overtime all evening.

Week 4 - ouch, reckon i'm in for a real beating so i need to be ready for it. Had to go private to been seen quickly The Chelsfield Hospital, Kent only because i'd be at the end of my cycle by the time i'd get seen on the NHS >:(

I used to live in Tunbridge Wells, not far at all!

Who diagnosed you? I'm taking it you haven't had an MRI yet?

My GP has made the the diagnosis. No MRI as yet, will know more on Monday when i PAY the specialist a visit.

Well lets see if we can't get you well informed over the weekend so you know exactly what to ask and ask for on monday!

Nice one, as i said earlier, ive learnt heaps this evening and have a  very good idea of what i need and need to say but the more info the better.

Thanks LE

Getting shadows as i write this - will catch up tomorrow ;)

wrote on Dec 3^rd, 2009 at 5:53pm:

Well lets see if we can't get you well informed over the weekend so you know exactly what to ask and ask for on monday!

Hi Darren & welcome to the nut hut.
This young LeLady knows her stuff, inhale the advice.

Cheers
Barry

diezel wrote on Dec 3^rd, 2009 at 4:36pm:

Thank god i've found this place!

My sentiments exactly! I wouldn't be surprised if the info and advice you're gathering here will revolutionize your CH experience as it has mine.  :)

It has already bejeeber - like a breath of fresh air (excuse the pun)

I've felt very alone with this but alas no more.

Thank you :)

Had a bad one last night. :(

It got me at 3.25am instead of my normal 1.30am, i managed to neck a Red Bull in one and it was all over by 3.40am which is pretty good going. Had another hit at 8.30am but saw that one through with nothing.The only problem is all of today i feel totally hungover - is this normal?

If I let an attack run its course, 90 minutes for me, I'll have that hung over feeling for 24-48 hours. Feel like someone beat me half to death with a 2X4!

Joe

Went to see the Neuro today which all went very well - She diagnosed me as definite a CH.
She felt that there was no need for an MRI because of the length of time i have been suffering (17 years).
She has started me off on Imigran Nasal spray at 20mg per hit - Is this enough to abort an attack??
Prednisone is something else she has recommended to try and also Lithium - Anyone had much joy from these??

Anyway in the meantime my prescription for O2 is all in hand via my GP and i hope to be getting this hopefully this week, touch wood.

It was quite funny actually, my GP phoning me to ask what flow rate and mask type I will be needing. I actually printed off the Oxygen info and dropped it into him on my way home from work so he could have nose through.

So all is good at the moment and feeling positive.

I'm still waiting to get properly diagnosed; had one GP tell me 'its probably clusters' and give me some migraine sumatriptans till the next time i see him. haven't seen an MD since ive been on this site, although I've had an mri and two ct scans before for seperate reasons so I"m not too worried that i'm going to drop dead.

predisone is good to prevent quickly, and lithium has been shown by many (back me up here guys) to really take the edge off CH's for a long-term preventative measure.

depending on your cycles, you may be able to go off meds between clusters or need to keep on a preventative 24/7 to stave off the beast.

02 is helpful. my one ER trip was ended quickly with non-rebreather 02. so many people swear by it i feel dumb not having my own tank.

after 15 years, i sure hope you feel better now you're being properly treated (and learning from this site)

Hi, I'm Karen (36 yr old) from Texas.  I have been suffering for about 10 yrs with CH, but only recently diagnosed.
Through the years, I have seen several doctors who never properly diagnosed me until now.  By reading some of the messages, I see that I am not alone is suffering so long without an answer.  I once had a GP tell me that it was stress.  I had a neurologist tell me that I had migraines because my MRI and CATscan appeared normal.  I was scared to see another doctor because I was convinced they would think I was crazy.  With the beginning of fall, I began suffering again and decided to start fresh with a new dr.  The only appt. available was with the nurse practitioner.  She said that everything I described to her was classic CH symptoms.  She ordered all my medical records to review and gave me a prescription for Imitrex.  Although I did not get much relief from the imitrex, I finally got an answer.  My husband is very supportive now that he realizes what I have been going through.  He used to get so angry when I would leave the room because I had a "headache." 
I was so elated when I found this site last night that I stayed up so late I fell asleep at the computer and have a crick in my neck today (which is nothing compared to a CH.)  I'm trying to read all I can so I am armed with info when I go back to the Dr.

Hello Diezel- You are on the right track with Helen.  She won't steer you wrong!  Try Melatonion at night.  It's over the counter at any drug or health store.
Glad you found us!

Hello Karen- Welcome, sorry you have CH, glad you found us!!
What kind of Imitrex are you on?  Some of us shun pills and nasal spray, it just won't stop the beast.  The pills didn't work for me.  I get the injections, but recently I switched to a vile so I can choose my dosage.  Check out the imitrex tip on the side menu.
Many of good tips on here.  What is your preventative?  Have you tried water x3 or energy drinks?
Angela

Angela, thanks for responding.  No preventative was prescribed, althought the dr. did mention that as a possibility.  I just didn't know enough about any of this at that appt. to ask enough questions. The imitrex is pill form.  I haven't tried the water or energy drinks.  I will go back in 2 weeks after my records have been received and reviewed.

Karen, in the meantime try:
drink lots of water
use Melatonin at night
try an energy drink or strong coffee at the onset of a headache, with an icepack on the back of your neck.
These may only work for so long, the beast is creative.

2 weeks is a long time to not have an appropriate abortive or a preventive.  Can you get in sooner?  How bad are your headaches?  Read the kip scale on the side menu. 

I am on Verapamil as my preventive, up 320mg a day.  4 80mg tablets spread out over a day.  It reduces the amount of attacks I have during a day, and the punch each CH has.  It is kinda like a damper for CH, muffles it.  It doesn't stop it.

I have Imitrex injections.  They can stop a Headache in it's tracks in 3 minutes.  But, I don't use the whole shot, I use 2mg of a 6mg injector.

The most important!  O2!  I don't use imitrex if O2 can abort my headache first.  Or unless I'm out of the house.  Big tank, 15lpm regulator and non-rebreather mask.  The doc will understand all that, he will raise his eyebrows and go "whoa".  But, ask any of us, that is what you need to abort a headache.

I hope you find relief soon.  It's been said a lot.  Control the beast, don't let it control you!!!

Angela