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