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28 May, 2009 - 9:40 pm

Hi‚ I'm new to the site and am in my 5 week of CH. I have suffered CH for 12 years but was only diagnosed 6 years ago. I am finding this current episode perhaps the toughest ever as I have two children under 3 and no support from family as they all live interstate. I have a great neuro but this time round the meds have been largely ineffective. Am looking to do a 3 day hospital treatment next week which will involve very high doses of steriod - has anyone else tried this treatment and were there any side effects?

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29 May, 2009 - 8:04 am

Sorry to hear you're suffering at the moment.
It is hard having kids. I've got two young girls and my wife and I are the only carers - everyone else is either interstate or in the UK. I've had a few attacks recently when I've been trying to ferry the kids to daycare‚ or get them ready in the morning and it puts more pressure on my wife which I feel bad for but I guess there's not much I can do!
I've never heard of this treatment before. The most I've had is 50mg of prednisolone. Apart from that i use oxygen to abort an attack in progress. Have you tried oxygen?
I've only recently got a cylinder at home which I rent from BOC- had to get a brief letter from my neuro to say what it was for etc.
Before I got it at home I'd call and ambulance or get to the A&E ward at the local hospital. Most of the time they'd put me on oxygen within a few minutes.

Good luck with it. I'd be interested to know more about it and how you go....

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29 May, 2009 - 1:24 pm

Hi Tania‚
Sorry to hear of your suffering‚
You have said you are going in to hospital for steroid treatment‚ I have not been to hospital for this treatment but have taken large doses of steroid at home for much longer than the recommended time frame.
The steroid I use is Prednisolone and I have taken 125mg daily for up to 4 months then slowly reducing at the same time I take Verapamil 240mg daily.
The side effects are severe -
Feel sick all the time
moon face
constipation
extreme hunger
extreme weight gain (I gained about 15Kg in 6 months)
sore joints
\This is just off the top of my head‚ you will also need to have bone density tests if you use steroid for long periods.
It can also bring on diabetes to list just 1 disease.

Try anything and if nothing else works good luck‚ I will do it again because it certainly dulls the pain.
I also use oxygen during the cycle

Regards
David

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01 Jul, 2009 - 9:23 pm

I've been diagnosed by 1 neurologist & 4 GP's.
But the freaky thing is I'm only 15.
I have been given permission by my neurologist to leave school at any time & go to the hospital (which is lucky only a 3 minute walk from my school) & ask for a morphine injection or oxygen.
The last time I had a terrible headache at school though‚ I was in too much pain to walk to the hospital‚ but maybe the injection & oxygen could work for you.
I've been put on many many strong pain killers which only make me drowsy or don't work. "Cafergot" is one my neurologist put my on & it works for some. For me it doesnt kill the pain‚ prevent it or give me any side effects‚ but it might work for you.

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04 Jul, 2009 - 7:24 pm

Im going to have a nerve root block done end of the month‚ injection in my spine under ct guidence‚ havent seen much about it but will let you know how it goes. have to try somthing

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09 Jul, 2009 - 6:11 am

Hi Tania‚ i myself am in my 5th week of CH's UGGG (normally they last 4 weeks to the day and go‚ but nooo not this time) been suffering them for the last 12 years (every 2 years)‚ god i hate this time of year!!! - i also have a daughter (im a single mum) and no family support - just good girlfriends.(i live near u). I wld be very weary of any surgery‚ since they cant define the 'cause' of them'.... this time around i have been taking tegretol‚ along with imigran nasal spray - and i have not had many 10/10 attacks‚ only 2 in nearly 5 weeks -been able to abort 90% of them (imigran)‚ so only a dull ache‚ I would def give Tegretol a try FIRST b4 surgery‚ I had an MRI during this attack cycle and it was normal‚ showed NOTHING - i think i wanted it to show something so i cld say ok thats the prob lets fix it. - only thing they did find was an enlarged blood vessel in the front above my eye - hmmm‚ and i told them to check the hypthlamas and that i had ch's - u want to talk to me pls ring me on 0408 081918 or anyone who wants to get ideas - sometimes its just nice to talk to someone who is also suffering so u know u are not alone‚ cause we all think why me and WTHell have i done to deserve this. My brother and I have set up this www years ago - cause we both suffer with them and realised people like us needed 'our' site. So pls feel free to talk to me if u want. Im pretty bored at home staring at 4 walls for 5 weeks‚ life stops when we have them!
Zara

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