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        Cluster Headache Help and Support >> Getting to Know Ya >> Hello to everyone- suffering or supporting.
        
(Message started by: cronic_head_case on Apr 9^th, 2008, 11:55am)

Title: Hello to everyone- suffering or supporting.
Post by cronic_head_case on Apr 9^th, 2008, 11:55am

Hi everyone, i just wanted to share with you my experiences and feelings about these life wrecking headaches!
I first started getting my CH when i was 15, and at the time i only got 1 or 2 a day.
Within a year i was getting about 4 a day and that was the chronic type without any remission.
I'm now 28 and am on so many different drugs it unreal.
5 Years ago i was taking 8 Verapamil a day, which worked really well for about a year and a half. In fact i rarely got a CCH for the whole time i was taking them.
I now take 4 Verapamil, 5 lithium and 12 gabapentin every day with oxygen and Imigran thrown in for good measure.
This has worked well for me for a year or so, but within the last month the CCH have come back and it feels like my life is being taken away from me once again.
The only doctor who is capable of treating the condition is a specialist in London, and whenever i see a GP they are incapable or doing anything because they don't know enough about it.
When the CCH come out to play i feel utter despair and a wondering of "why me". I'm guessing that that's the same for everyone!
I get a lot of great support from my long suffering wife who i drive crazy most of the time, but without her i would be screwed!
So that's basically my experience in a nut shell. Sometimes it's good to just put things down on paper and share your thoughts with others in the same boat.

Title: Re: Hello to everyone- suffering or supporting.
Post by Linda_Howell on Apr 9^th, 2008, 12:38pm

Welcome. I am so glad that your wife is being such a good supporter to you. They're worth their weight in gold, aren't they?

Quote:

I now take 4 Verapamil, 5 lithium and 12 gabapentin every day with oxygen and Imigran thrown in for good measure.

I am probably misunderstanding this statement above. What are the dosage amounts in each of these pills that you are taking so many of, each day?

Linda

Title: Re: Hello to everyone- suffering or supporting.
Post by DennisM1045 on Apr 9^th, 2008, 12:54pm

Welcome!

Vent all you want. It is very good to get it out of your system. Especially to an audience that can understand what you are talking about.

It sounds like you have a great supporter there. Pleae thank her for us. She should think about logging on too.

I'm with Linda... numbers of pills don't tell us as much as the dosage size.

I'm taking 8 Verapamil pills a day right now but they only amount to 320mg. 40mg pills gives me the fine tuning I need to experiment and get the dosage right.

-Dennis-

Title: Re: Hello to everyone- suffering or supporting.
Post by cronic_head_case on Apr 9^th, 2008, 1:21pm

Oh, OK i suppose the doses would help!
I take 4800mg of gabapentin, 2000mg of lithium and 720mg of verapamil.

That sounds like quite a lot when you write it down. I'm surprised i down rattle when i walk...or just fall over. lol.

Title: Re: Hello to everyone- suffering or supporting.
Post by Linda_Howell on Apr 9^th, 2008, 1:33pm

I am not trying to second-guess your Dr. but that seems like a very high dose of the Gabapentin.

Quote:

The effective dose of Neurontin is 900 to 1800 mg/day and given in divided doses (three times a day) using 300 or 400 mg capsules, or 600 or 800 mg tablets. The starting dose is 300 mg three times a day. If necessary, the dose may be increased using 300 or 400 mg capsules, or 600 or 800 mg tablets three times a day up to 1800 mg/day. Dosages up to 2400 mg/day have been well tolerated in long-term clinical studies. Doses of 3600 mg/day have also been administered to a small number of patients for a relatively short duration, and have been well tolerated. The maximum time between doses in the TID schedule should not exceed 12 hours.

Title: Re: Hello to everyone- suffering or supporting.
Post by cronic_head_case on Apr 9^th, 2008, 2:16pm

Yeah it is a bit high, but i've always had a high tolerance to drugs and whenever i see the specialist he just tells me to increase the doses.

Until two weeks ago i was on 1260mg and then i put it up to 1680mg which seems to have done the job...touch wood! (i'm not sure but i think i might have put myself down for more gabapentin earlier)

Title: Re: Hello to everyone- suffering or supporting.
Post by cronic_head_case on Apr 9^th, 2008, 2:20pm

Oh dear, i put down weigh to much gabapentin. The amount i put down would work out at 34 pills a day!

I'm really sorry, maths was never my strongest suit!

Title: Re: Hello to everyone- suffering or supporting.
Post by Linda_Howell on Apr 9^th, 2008, 2:31pm

Oh Whew!!! I'm glad you clarified that. I didn't want to scare you or anything but I wanted so bad to tell you to PLEASE check back with your Dr. on that dosage.

Linda

Title: Re: Hello to everyone- suffering or supporting.
Post by Guiseppi on Apr 9^th, 2008, 3:20pm

Welcome to the board! ;) My wife's been an awesome supporter for 28 years, they do make all of the difference in the world don't they?

Guiseppi

Title: Re: Hello to everyone- suffering or supporting.
Post by LeLimey on Apr 9^th, 2008, 5:36pm

Hiya!

Who is the specialist you see?
Have you tried Oxygen? What abortives do you use?
Theres loads of help and support we can give you and your wife, supporters need somewhere to vent too and she's more than welcome!

Regards
Helen

Title: Re: Hello to everyone- suffering or supporting.
Post by cronic_head_case on Apr 10^th, 2008, 6:17am

Hi Helen, I see Dr Peatfield at charingcross, and so far he has a 100% success rate of fixing me up.

I use oxygen at 25lt per second which works sometimes but takes a while to get going. Sometimes i use the whole cylinder to get rid of the CH.

I also use Imigran nasal sprays and they work about 90% of the time but again they take about 20 minutes to get going.

It's not to bad if i'm at home because i've got the oxygen and a safe haven if you like, but when i get them at work, i'm in real trouble trying to find a place to go where its quite. I work on a building site most of the time so it's quite noisy!

Title: Re: Hello to everyone- suffering or supporting.
Post by Pinkfloyd on May 11^th, 2008, 11:01am

on 04/10/08 at 06:17:05, cronic_head_case wrote:

I use oxygen at 25lt per second which works sometimes but takes a while to get going.

It takes a while to start up the jet engine??

on 04/09/08 at 14:16:38, cronic_head_case wrote:

Until two weeks ago i was on 1260mg and then i put it up to 1680mg which seems to have done the job

Of what?

on 04/09/08 at 14:16:38, cronic_head_case wrote:

I'm really sorry, maths was never my strongest suit!

Be careful man, this type of bad math can be dangerous to your health

Bobw