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        Cluster Headache Help and Support >> Cluster Headache Specific >> New Drug ... my neuro is excited
        
(Message started by: BarbaraD on Mar 14^th, 2008, 9:30pm)

Title: New Drug ... my neuro is excited
Post by BarbaraD on Mar 14^th, 2008, 9:30pm

Went to the neuro today and I've not seen him this excited in a while.

He came in the room with a sample for m and told me he was putting me on it. It Namena - a drug used for Altzheimers (and NO that wasn't why he was putting me on it!). He said new studies show it can HELP CH and he wanted to test it on me.

Most of you know I'm on topomax (which I'm still on and he's happy with that).

I forget all the technical jargon on Nemenda, but he told me there's no way it can hurt me and the worst case senerio is that my memory improves (no downside to that one). It's a little different dose than the one for Altzheimers, but it ends up 10mg a day after the first week of 5mg.

He was so excited about it that now I'm excited about it too. So at least my memory will improve and hopefully my headaches also. Right now I'm in a "high" cycle so we should know in a little while if it's working on the headaches any at all. He said he wouldn't "wish" a high cycle on me, but this was the best time to try it out.

So ya'll keep your fingers crossed. This may be a breakthru for us all..... Will keep you posted -- now that I should be able to "remember" to do so.

Hugs BD

Title: Re: New Drug ... my neuro is excited
Post by Annette on Mar 14^th, 2008, 9:56pm

That sounds very exciting and promising Barb !

I am crossing everything crossable that it will work really well for you and stop all those hits :-*

Title: Re: New Drug ... my neuro is excited
Post by debOUCH on Mar 14^th, 2008, 9:58pm

great news barbara! i am seeing neuro for 1st time monday, and armed with a folder WAY HIGH!!! printing your post as i type................tks.....................PF wishes your way!
deb

Title: Re: New Drug ... my neuro is excited
Post by thebbz on Mar 14^th, 2008, 9:59pm

Good luck with that. And the CRS.
thebb

Title: Re: New Drug ... my neuro is excited
Post by Linda_Howell on Mar 14^th, 2008, 10:15pm

LOL...I googled it and came up with an island in FIIJI

Title: Re: New Drug ... my neuro is excited
Post by DragonSlayer on Mar 15^th, 2008, 12:54am

LOL ;;D I gotta change neuros real soon. ;;D

MOODY'S NAMENA RESORT, FIJI is an environmentally friendly private island South Pacific getaway and offers scuba diving, snorkeling, fishing or honeymoon vacations with Fijian bure accommodation. The Resort is a secluded paradise with white sand beaches as well as hiking trails through tropical forest.

Title: Re: New Drug ... my neuro is excited
Post by Ray on Mar 15^th, 2008, 5:17am

Hello BD:

Best wishes for the best possible outcome with this new medication.

http://www.namenda.com/sections/20/proven-benefits.shtml?WT.srch=1&PlacementGUID=EC11EDBA-5612-40F3-B643-CB310A9DA3D2

Ray

Title: Re: New Drug ... my neuro is excited
Post by Sean_C on Mar 15^th, 2008, 5:23am

I hope it works barb, keep us posted on your results.

Cheers [smiley=thumb.gif]

Sean............................... [smiley=grin2.gif]

Title: Re: New Drug ... my neuro is excited
Post by Ray on Mar 15^th, 2008, 5:28am

Just a quick post script. I found an article describing the use of this drug to treat chronic headaches.

http://www.helpforheadaches.com/articles/memantine.htm

Ray

Title: Re: New Drug ... my neuro is excited
Post by beachmusic on Mar 15^th, 2008, 7:03am

Barbra,
Thats the nicest news I have heard for awhile. I have everything possible crossed here also. And will be taking this info along with me to the doctor this week. Thanks for the information. Mary Ann

Title: Re: New Drug ... my neuro is excited
Post by BarbaraD on Mar 15^th, 2008, 7:12am

LMAO LInda -- Ok so I just STARTED taking it and I'm OLD -- can't expect results overnight -- FIJI sounds NICE --

Spelled it WRONG -- It's NAMENDA...

But ya know - they were still experimenting with topomax when I started it to and it's worked great for me, so.... here's hoping...

Hugs BD

Title: Re: New Drug ... my neuro is excited
Post by Grandma_Sweet_Boy on Mar 15^th, 2008, 7:48am

Barb - I sure do hope this works for you and gives you a real break.

As the others have said, please keep us posted.

Hugs
Carol

Title: Re: New Drug ... my neuro is excited
Post by BarbaraD on Mar 15^th, 2008, 1:42pm

Thanks for the article Ray...

Apparently they've been studying it since 2003 for migraines.

It said they went up to 20mg (same dose as for Alzheimers), but he told me to keep it to 10mg at the max dose (5mg morning and 5mg nite). Start out with 5mg a day and next week we go to the 10mg a day.

But if it even slows down the hits or makes them easier this will be something to add to our arsnel...

Hugs BD

Title: Re: New Drug ... my neuro is excited
Post by mc_ashes on Mar 15^th, 2008, 2:35pm

Great news Barbara, hope it gives you some relief.

Mark

Title: Re: New Drug ... my neuro is excited
Post by Jonny on Mar 15^th, 2008, 2:48pm

on 03/14/08 at 21:30:31, BarbaraD wrote:

Went to the neuro today and I've not seen him this excited in a while.

He came in the room He was so excited

He didnt touch you did he, Mom? >:(

Ill kill the bastard! >:(

(Sorry, couldnt resist....LMAO [smiley=grin2.gif] )

Title: Re: New Drug ... my neuro is excited
Post by DennisM1045 on Mar 15^th, 2008, 4:25pm

Thanks for sharing this Barbara. I hope it's your magic bullet.

Damn it's tough to type with all these things crossed...

-Dennis-

Title: Re: New Drug ... my neuro is excited
Post by sandie99 on Mar 16^th, 2008, 8:06am

Lots of good luck with the new med, Barb! I hope it helps you. :)

Sanna

Title: Re: New Drug ... my neuro is excited
Post by BarbaraD on Mar 16^th, 2008, 8:07am

on 03/15/08 at 14:48:45, Jonny wrote:

He didnt touch you did he, Mom? >:(

Ill kill the bastard! >:(

(Sorry, couldnt resist....LMAO [smiley=grin2.gif] )

:) Unfortunately, I've got shoes older than he is....

Hugs BD

Title: Re: New Drug ... my neuro is excited
Post by GonnabeatemJudi on Mar 18^th, 2008, 7:24am

Awesome news Barb! Keep us posted and btw, that Fiji Island would be a nice place to have a week or year or lifetime, eh?
PF wishes - R&R(RedBull & Relpax)

Judi

Title: Re: New Drug ... my neuro is excited
Post by monty on Mar 19^th, 2008, 11:27am

http://www.memantine.com/en/

They think it works by blocking NMDA/glutamate receptors - hope it helps.

Title: Re: New Drug ... my neuro is excited
Post by markinct on Mar 21^st, 2008, 4:29pm

Went to my Doc today..... >:( Won't let me try it... Says my health care wont cover it because it hasnt been FDA approved for off label use yet. But, if it works.......

Verapimil and Top arent working.... took me off those today and is trying cafergot... dont know what hes thinkin

Title: Re: New Drug ... my neuro is excited
Post by HeadhurtinMama on Mar 21^st, 2008, 9:50pm

I so wish I had seen this post earlier in the week, I just went to the neuro on Wednesday! Will have to investigate this more, as verapamil is making really sick to my tummy every time I take it now.

Title: Re: New Drug ... my neuro is excited
Post by gore2424 on Mar 22^nd, 2008, 12:06am

I am going to print all that I can about this med you all have posted and take it to my nuero's office to let him have something to maybe try in the future for me ( if current meds start to lose effect on my CH) and any other patients he has that might benifit from it thanks to all Terry