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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Why is nothing working!!!
        
(Message started by: calisto on Sep 21^st, 2006, 11:45pm)

Title: Why is nothing working!!!
Post by calisto on Sep 21^st, 2006, 11:45pm

Its 4.15 am and it even hurts to blink,the second hit of tonites attempt at sleep has just ended,theres no point in trying again,it'll only hit again if i do!!
I took 3 mg melatonin before bed - 3mg normal,3mg time release hoping 2 stave off the beast.Its only the second night ive tried it but its not doing a thing.I had it sent over from the states and im so dissapointed it doesnt work.Whats even more dissapointing is the o2 doesnt seem to be working much either,even with a clustermasx.If i inhale it when the beast is just a shadow then its not too bad but once any kind of pain has set in it doesnt do a thing.
The melatonin,clustermasx and o2 all arrived on wednesday and gave me a much needed boost to my morale.I was hoping and looking forward to going back to work tomorrow after almost 3 weeks off but ill be so tired and groggy now that i wont be able to do much more than shuffle around at home waiting for the next bout of pain to strike.The Prednisolone the doc prescribed isnt doing jack but then at a pitifully low dosage of 30mg i didnt really think it would.All its doing is making me feel shitty.My fiancees being fantastic about it and the look of worry in her eyes is killing me me but im begining to feel more and more isolated.
Im supposed to start a new job next week but i had to ring my new employer today and explain the situation.She was very understanding - thank god and has offered to put my start date back a week which is a load off my mind.Im back to the doctors this evening - for all the good its going to do.Im gonna ask him to refer me to a neuro who specialises in headaches but by the time the appointment comes thru this bout will prob be over ( i hope!!).Hey, at least i might get a plan off attack for my next cycle in 2008 but by then the beast will have changed tactics again.Im doubtfull the doc will refer to a specialist anyway,ill be lucky if i get to see a normal neuro.

I started this cycle with a "its not gonna get me down this time round!" attitude but right now it all seems so hopeless.Lifes just pain and sleepless nights and ive had a gutfull!!This is the most vicious cycle ive ever had,thank god for the imigran but if the doc wont prescribe any more tonite i dont know what im gonna do,i cant stay awake for ever!!

Thanks for listening.

Simon.

Title: Re: Why is nothing working!!!
Post by kcopelin on Sep 22^nd, 2006, 7:56am

Simon,
Sorry you're having a hard time. I take 9mg of melatonin and 50 mg of benadryl-that cuts night time hits-though I have been waking up at CH times without the pain lately. Its worth a try to up the dose. Also, the first two nights I tried the melatonin-I got hit really bad, then I increased to 9 mg and it kicked in.
Good luck-glad you got your arsenal but sorry its not working. What about a preventative? Prednisone taper is suppossed to go with starting a preventative like verapamil-and pretty high doses of that by the way. Don't know if you'll get this before your Doctor's appointment-but I recommend printing off info from this site and taking it in.
Praying that you get a break Simon,
kathy

Title: Re: Why is nothing working!!!
Post by Bob_Johnson on Sep 22^nd, 2006, 11:19am

Pred dosing (starting dose) ranges from 10 to 100mg in various medical reports. You should start another round at higher dose.

Melatonin is not the best thing to use, even though a good many folks like it.

If you haven't done so, print this and use as a tool to discuss options with your doc.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

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

Also see,

http://WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

Title: Re: Why is nothing working!!!
Post by BB on Sep 22^nd, 2006, 7:17pm

Hi Calisto,

Sorry to hear thinsg are notworking the way they should. Please take heart, it takes a while for them to kick in and the dosage you are taking are too low.

Try increase the Melatonin, DH needed to take 12 mg and for 3 nights in a row for it to work properly, also try upping the prednisone to at least 50 mg daily, preferably 70 mg then tapering it down once it starts working.

I am a GP , DH has CH and I have done lots of reading and researches and discussion with neurologists so I am not giving you unsafe advices, believe me.

Also have you tried red bull, strong coffee or other energy drinks that contains taurine and caffeine at the first shadow? Can work really well there too.

All abortives work better if taken early ( ie before the vasodilatation becomes full blown and the trigeminal gets squashed ) as by then only the triptan will work.

Take care and painfree wishes to you. Hope the meds kick in soon.

Annette

Title: Re: Why is nothing working!!!
Post by calisto on Sep 23^rd, 2006, 2:03am

Thank you all for your kind words.Tonite im afraid is pretty much the same story.Ive been back to the docs and gone back to verapamil,i just hope it doesnt take too long to kick in,it was incouraging to read that the melatonin may take time to kick in,hopefully ill get some sleep tonite.

I continue to live in hope!! :)

Simon.