So I have finally found a preventative med that is helping!  I tried a number of the conventional first-line meds, second-line meds, even cocktails.  At one point I was up to 960 verapamil (with EKGs, of course), 900 lithium, and 100 topiramate, all three at once with NO relief!  Prednisone never affected my CH (though I am aware it isn't considered a prevent.)  Never stopped one hit from occurring.  

Am under the care of Goadsby, as many of you know.  We were about to try methysergide maleate (aka Sansert,) but he was hesitant because of my age - I would have to be on it for a long time unless my CH morphs... I'm chronic.  Having to take breaks, etc for quite some time with a med with lots of side effects wasn't the best option in his opinion.  It was the last med we were down to. 

I decided to try one thing he came up with before - Namenda (or memantine hydrochloride) AND IT SEEMS TO BE HELPING!!!!!  WOOOOOT  I hadn't had any relief in the last year and then some until I upped the Namenda to 15mg.  I have had a reduction in frequency and severity of my hits!!  What a relief!

I use O2 to abort for the most part, but the fact that I found nothing for the longest time to stop the &$% CHs from occurring so often was a bummer.  I decided months ago that I wasn't going to let the beast stop me from doing things if I could, I was going to live to the best of my ability!  Now my ability is a bit more!   :D

Namenda has been used for the last 10 years or so for migraine prophylaxis (off-label, of course.)  It is primarily an Alzheimers med.  hmmm perhaps that explains it - it's all in my head bahahahaha  kidding. 

Wanted to share anyway, for those of you who have tried so many meds and thought they tried it all - Goadsby said that there have been docs in LA area having much success with CHers and Namenda so he wanted me to give it a try.  It is a NMDA (or glutamate) receptor antagonist, though it is also a serotonin 5-HT3 receptors antagonist, from what I gather. 

8-)
Val

Interesting...think I'll do some reading.....and damn cool it's helping you!

Relief for Val is one of my specific prayers answered. I am stoked - and very happy for you.

What happens if I miss a dose?

Take the missed dose as soon as you remember. If it is almost time for your next dose, skip the missed dose and take the medicine at your next regularly scheduled time. Do not take extra medicine to make up the missed dose.

I thought this was a hoot considering it's primarily an Alzheimer drug.

        Potter

I know Potter - the other funny thing I saw - one of the claimed side effects is confusion... how do you determine that an Alzheimers patient is confused due to a med???   :o  sorry, BUT... one question I'd really like to know.   ;D

Nice we can find a little humor in this shit.

         Potter

I'm glad to hear the namenda is helping. :)

woo woo!!!!

Charlotte

Charlotte wrote on Mar 16^th, 2010 at 10:20pm:

woo woo!!!!

What she said.  [smiley=vrolijk_26.gif] [smiley=vrolijk_26.gif]

Wow... that's fantastic, btw isn't Goadsby working on some also Glutamate or some GCRP, or how do you type it, thing that also would be used for migraines, CHs?

Good to hear it is helping. I remember one other report on memantine here, and that person said it didn't help her (but nothing helps everyone here, one data point only tells us about one person).


Quote:

Wow... that's fantastic, btw isn't Goadsby working on some also Glutamate or some GCRP, or how do you type it, thing that also would be used for migraines, CHs?

Namenda/Memantine is a glutamate blocker. There are also a few pharmaceutical CGRP blockers that are being investigated, and they have generated some excitement for migraines and clusters, but are not ready for prime time yet.

Any more info on Namenda memantine. Interested in side affects, warnings, precautions, etc. I probably will not be able to use any triptans with my current age, blood pressure, caratid artery blockage, too dangerous. Looking for any alternatives. Thanks I'm a newbie. First cycle, 3 mo now.
Donna Mae

Perfect timing Val..I just got a sinus infection, all my meds quit 1st time in 2 yrs and its always so hard to control them again. I have a nero app. fri and had NO idea what I was going to suggest, until now! Thank you..its definitely a start. When you've taken so many different drugs and everything quits you just think what now?                Amanda