Hi all
I started with CH in 1960.as a 10 year old. Gp called it synus headaches
Sporadic problems in my teens. 20s 30s frequent singular bouts sometimes I realize now in 'clusters'. Also predominantly autumnal events butnot exclusive . Sometimes delayed meals could bring them on also. Struggled on. Never went to GP just thought that It was hard luck.
When I was about 60 ,7 years ago started in earnest woke from sleep dying for a pee with bad headaches every 40/50 minutes over a few nights . Went to gp who dx prostrate probs gave me meds that did no good. Eventually calmed down as we do.
6/8months in later in my car I had radio show on BBC Radio 2 Jeremy Vine show ,they described Ch  symptoms ,in 300 yards of travel I knew that was what I had been suffering from for 50 years.
The following autumn they came back. I saw gp told him what I had.
It took 3 months to see neurologist. By which time I was coming out of phase. He sent instructions for next time. Gp misunderstood and said take prednisolone and wean off over 5 weeks if pain comes back start taking verapamil then. 2years later next bout did so but the verapamil sent me bonkers . Steroids pushed me into Diabetes 2.big time.I was a Podiatrist knew all about DM2 but did not connect my thirst to it.just thought it was steroids as when I stopped them my thirst became normal. On my last phase 2 1/2 years ago picked up on th DM2.wow.
That is well under control now. The neuro would not give me O2. Played merry hell with gp several times eventually got a tank of O2. The day after my last headache that time.!!!
Started again 4 weeks ago. Worst ever boutsgiven topirimate after 2 weeks no good. Begged gp for O2 again butcommitte would not allow until seeing Neuro again. Wednesday driving me loopy so called 999 ambulance .It was like turning a light switch on.
Thursday I went to A&E and tracked to on duty Neuro.he brought in the headache team senior nurse.She agreed instantly to help.She injected steroid into my subocciputal nerve but no difference yet
Friday 17th O2 arrived .Already used a full tank.
Points of interest, there is absolutely no doubt about dx but . I stay calm and lay on my bed .over the years this was the only way I  could cop.4head rubved over my temple and  forehead kool patches stuck on in the same places. Previously my headaches started and finished abruptly each time. Usually 3a.m. ish. But not always every other day 1 maybe 2 a day.Then got on with my day
This time very different tuesday night I lost count and several in the day also.
O2 is taking most of it away. But my forehead is freezing after dose. This has often given me severe head aches. Sleep is difficult at 1am. After sitting taking the O2. Tonight I am going to stay in bed weather is getting chilly even with a fleecy blanjet on
I have also slight pains most of the day.with a muzzyness.
Being diabetic the energy drinks are not a solution. Is melotonin any use for me.
So that is my story so far.
If I have said too much and sent you to sleep . I'm sorry :) :( :-?

Sorry my name is Geoff   I am from the UK  Up North
Thanks for the opportunity to blow out my windy lot
Geoff

Hey Geoff,

Welcome aboard CH.com, you've come to the right place.  We know what you've been going through and the good news is it doesn't need to be that way.

The odds are very high you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your cluster headache (CH).

The following link will download a copy of the anti-inflammatory regimen CH preventative treatment protocol.  There are some chaps expert in this protocol there in the UK who will chime in soon with internet links and locations to obtain the needed supplements.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This is not a joke or a flyer...  Over 700 CHers have started this regimen since December of 2010... A few of them are even neurologists...  Better than 80% of CHers starting this regimen experience a significant reduction in the frequency, severity and duration of their CH... Good enough to get on with regular daily life without holding up in a dark room afraid to go out... 

Better than 50% of CHers who start this regimen experience a lasting cessation of CH symptoms as long as they stay on this regimen.

Take care and please keep us posted...

V/R, Batch

Hi Geoff...welcome...this is the place to be. You already got the best reply from batch...just a couple of thoughts from me....

I note your mention of "missing meals" as a trigger....same for me and I surmised low blood sugar. Have you noted any correlation between whatever diabetes meds you take and ch activity? Mebbe you can tweak timing or dosage.....

Re energy drinks....they can be a helpful adjunct to O2, D3 and standard meds. Totally understand the
problem re sugar...as these drinks contain LOTS (probably to cover the awful taste)...and provide a sugar rush in combination with the caffeine/taurine. They do make diet versions...just steer clear of asparatame (artificial sweetner). Best bet might be the 2 oz 5 hr Energy drinks...I believe they also come in no sugar versions. Or, triple brewed coffee....that was my go to before energy drinks. Drink HOT and FAST.....

Best

Jon

Hi Geoff and welcome

I'll second the D3 suggestion, it has worked wonders for me and many others.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - Ouch UK has a website, forums and a help line. They will be able to give you a lot of hints and tips around the NHS specific hoops you need to jump through to get the best outcomes for you, so it is well worth checking there out too.

You're also one of the few to get a good outcome from going to A&E (the UK name for ER). All too often people are simply assessed as having pain drug seeking behaviour, so it is great that it worked for you.

I too have missing meals or similar disruption as a headache trigger, although more for migraines than CH, with no diabetes issues at all. Plus I've seen others comment about it being a trigger for them too.

Keep reading and ask any questions you have.