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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> My Lifeline to sanity
        
(Message started by: judkins on Mar 13^th, 2005, 2:37am)

Title: My Lifeline to sanity
Post by judkins on Mar 13^th, 2005, 2:37am

So thrilled to have found your site and able to register.
I was diagnosed in 2001 and was given
Epilim & Amitriptyline as a preventative.
Imigran nasal sprat as an abortive.
I was using these drugs until approx 5 weeks ago and I had a bad bout and saw a new GP. He had no hesitation in prescribing me with Imigran injections. Wot a difference. ::)

I realise that these Injections are costly to our NHS budget but I do pay for my prescriptions even though I have been off work for a month now. I have obtained some wonderful advice from this site... and others and I will present it to my doctor tomorrow. Gonna ask him about Oxygen. He is always willing to listen so I am very lucky.
My clusters wake me up most nights after I have slept for an hour or so. :(
My poor dog never knows whats going on except that his mum is kissing walls with her head.... Mind you he seems to be getting used to my actions now and follows me around as I'm pacing. I get so tired..... but lying down in bed is something I just can't consider in a cluster.

Gonna have a read round your boards now.
Bless you all.
Judkins ;)

Title: Re: My Lifeline to sanity
Post by LeLimey on Mar 13^th, 2005, 6:49am

Hi Judkins! Nice to meet you!
Have you thought about getting a pre payment certificate? you will save alot of money on prescriptions that way.
O2 is fantastic but you need the proper equipment, check out the ouch uk site (use the ouch link button on the left) as it will give you the exact prescription info your doctor needs. You need to look at the CD cylinders as they come with an inbuilt regulator and go up to 15 LPM. You need to use the O2 at between 12-15 LPM (litres per minute) You also need the right mask and stuff. You NEED a non rebreather mask. If you don't have the right stuff it just doesn't work and you don't get the right effect from it.
How long do your cycles last and how often do you get them? My doctor looks at OUCH UK's website all the time, he is brilliant.
Check out some of the other threads here too, the kudzu one is very interesting under the medications board. My best advice is to read read and read! Ask all the questions you want and most importantly of all... let us know how you are getting on okay?!
Take care
Helen

Title: Re: My Lifeline to sanity
Post by Gator on Mar 13^th, 2005, 6:56am

Welcome to the website. Sorry you have a reason to be here, but here is where ye belong for info and support of cluster headaches.

I'm glad to see you've been reading. Knowledge is key to getting the best treatment. You need to be proactive and really need to know more than your doc - which usually and unfortunately isn't that difficult.

Epilim is the same thing as Depakote here in the states. It is not one of the more effective meds, but it does work for some. I used it up to 1500mg with no effect.

Since you're printing out things for your doc, print this out. It describes preventative, transitional, abortive and surgical treatments for CH.

http://www.brightok.net/~mnjday/chtherapy.pdf

Don't ask him about oxygen, tell him you want it. It is very effective for most of us, low cost and low side effect. It's one of the few things that should be automatic, unless there is an actual medical reason a person can't use O2 and I can't think of any right off hand.

You are right about the imigran (imitrex here in the US) injections. Much quicker than pills and more effective than either the pills or the nasal spray.

Have a read around the board and don't forget the links to the left if you haven't already been there. There is also an OUCH UK website that would have information more in line with what you have locally available as far as meds, physicians, etc. I believe there is even a telephone hotline you can call to get information and talk to another clusterhead. Use all your resources to get the maximum benefit of all that is available.

Again, I want to welcome you to our little corner of the world. Stick around, there will be others drop in to say hello.

Title: Re: My Lifeline to sanity
Post by judkins on Mar 13^th, 2005, 7:30am

Thank you guys for your replies. All your advice is gratefully received.
This cycle has been with me since last Oct, getting hit about 4 times a day, but only lasting about 20 minutes. Leave me feeling totally drained though.
My worst attacks come at night when I;ve been asleep for a while. Have to try and keep my wits about me cos I can't jab more than twice in 24 hours. Thats why I now think the Oxygen would help.
Been off sick for a month and I can't get below a kip6.... although my jabs do help at the time.

Thanks for all the info....... Judith

Title: Re: My Lifeline to sanity
Post by Gator on Mar 14^th, 2005, 12:31am

on 03/13/05 at 07:30:43, judkins wrote:

If you use the Stat Dose kits, check the Imitrex Tip in the links to the left. It's very easy to do. Many people find they can abort with only 2 or 3 mg, which means you can abort four to six attacks per day and still not exceed the 12mg per day safety limit. I used this for a long time until I got my neuro to prescribe the imitrex in vials.

If you can get the vials, they make splitting the doses ever so easy as you can very accurately measure out your dose. You also avoid using the same needle twice or three times. I use the vials and a .5cc, 30 guage, short needle syringe. Super easy and less painful that a Stat Dose jab.

There is more than one way to skin a cat!

Also, many people are having real success with a plant called Kudzu. The pills can be ordered online and it's much easier on the body than the imitrex. Some people are finding they can wein themselves in varying degrees from their other preventative meds. Check it out in the Medications Board. It is quite a lengthy thread 16 pages or more. Read all the pages as there are information updates all throughout the thread.

Good luck!

Title: Re: My Lifeline to sanity
Post by judkins on Mar 14^th, 2005, 7:36am

;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D

Just to update you. My wonderful GP is referring me back to my neuro as he wants me to go onto Oxygen now. Also he is going to build me up on Verapamil and monitor me cos I already take Atenelol for hypertension. Many thanks to you all that gave me the info, GP asked to keep my print outs in my notes. Think he wants to educate my neuro!!!!!! [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Bless you all. Have a good day. Judith