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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> My visitor is back ! Need advice on Meds
        
(Message started by: headbanger45 on Jul 21^st, 2005, 12:50pm)

Title: My visitor is back ! Need advice on Meds
Post by headbanger45 on Jul 21^st, 2005, 12:50pm

Well, its been over a year and I was just beginning to not think about it, when bam, we're baack! Same time of the night, now into my 5th day. Scale 6-8. I fell back on my Relpax and it seems to kick-in in about 15-20 min., but not without a hang-over type feeling the next day. I just start indocin this morning taking 1- 3 times a day. Am I on the right path? I'm not much on meds, but when your head is banging and your right eye feel as thought its being pulled out, I'll try anything. Any new stuff out there other than Relpax and indocin? Thanks for the help.

We are a special breed, but not sure why.........

Title: Re: My visitor is back ! Need advice on Meds
Post by wip5150 on Jul 21^st, 2005, 1:01pm

Howdy banger - sorry you special friend is back.

I would find a good, trustworthy General Practicioner or (preferrably) a good, understanding Neurologist. As is said many times much more eloquently, what works for some won't work for others. As such, it's a lot more trial and error than any of us like.

I am on Verapamil and using Imitrex nasal on this cycle which is now on week 13. I would suggest o2 as an abortive - many people swear by it. Lots of information over there on the left hand side of your Dell screen - look through it.

The bottom line is that you need to start the trial and error process with a doctor. Best of luck.

Title: Re: My visitor is back ! Need advice on Meds
Post by E-Double on Jul 21^st, 2005, 1:12pm

Hiya and sucks to meetcha ;)
(just kidding.....the reason sucks)

This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of danger/side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: My visitor is back ! Need advice on Meds
Post by Topical on Jul 22^nd, 2005, 5:07am

I agree with edouble get the O2 if you have not tried it before.

What other medications have you tried that didn't work?

I would not get Imitrex Nasal or pill. According to the FDA it has not been established as a treatment for CH.

You can search on the drugs your doc prescribes here:
http://www.fda.gov/cder/index.html

Title: Re: My visitor is back ! Need advice on Meds
Post by headbanger45 on Jul 22^nd, 2005, 9:38am

Thanks for the advice. It's nice to know others out there understand what a major pain in the head CH's are. Tomorrow just might be a PF day!

Title: Re: My visitor is back ! Need advice on Meds
Post by wip5150 on Jul 22^nd, 2005, 9:40am

on 07/22/05 at 05:07:57, Topical wrote:

The FDA may not have established Trex nasal as a treatment for headaches, but I swear by it. I think the key here is to start with Oxygen and go from there. We all know what works for one, may not work for others.

As a sidenote, I LOATHE taking the Trex nasal but my insurance pays for it - they won't pay for the amount of trex injections I would need even using the trex tip.

Title: Re: My visitor is back ! Need advice on Meds
Post by giffy76 on Jul 22^nd, 2005, 10:36am

I take Depekote, it doesn't work for most but it drops my hits down to about 3-5 on the kip once a day. When I do get hit Imitrex injections are my best friend, 5 - 10 min. and I'm golden. Good luck, we are always here.

Title: Re: My visitor is back ! Need advice on Meds
Post by E-Double on Jul 22^nd, 2005, 12:21pm

Practically EVERY medication we take is off-label

This goes for preventative medications and abortive

Title: Re: My visitor is back ! Need advice on Meds
Post by pepsi on Jul 25^th, 2005, 12:03am

i have been on indocin for 5 yrs. now and i have had ch for 14 yrs. it does help me a lot. generally they stay away. but once in awhile i will get a cycle. i think indocin is a life saver. for almost 9 years i was a ginue pig. it in fact will take up to a couple of weeks to get into you system, so give it a chance. hope this helps.

Title: Re: My visitor is back ! Need advice on Meds
Post by Topical on Jul 25^th, 2005, 4:46am

on 07/22/05 at 09:40:08, wip5150 wrote:

Glad it works for you, it didn't do much for me. Read the paperwork they filed with the FDA. One of the 520+ 'events' reported during the studies was cluster headaches.

So someone thought it either brought on their cycle, they had an attack after taking it or god forbid they developed CH while using of Imitrex. Weird eh? I did a double take when I read that.

http://www.fda.gov/cder/foi/label/2004/20626s004lbl.pdf

Title: Re: My visitor is back ! Need advice on Meds
Post by wip5150 on Jul 25^th, 2005, 9:45am

on 07/25/05 at 04:46:00, Topical wrote:

That is bizarre and just goes to show that treatment of this "disorder" is really just trial and error and it's further compouned by the fact that what works for one cycle (if your episodic) may not work the next time.