Jump to content
ClusterBusters
CHfather

Memantine / Namenda??

Recommended Posts

I used it for 3-4 weeks, was still ramping up, when severe depression set in. Up to that time it had not helped any.

  • Sad 1

Share this post


Link to post
Share on other sites

I also tried it but after only 3 days I got terrible depression (which i never ever suffer from) so had to stop. If you can get past that though I've heard some good reports.

  • Sad 1

Share this post


Link to post
Share on other sites

I don't know if you have access to the whole study but when you look at the mechanism of action I don't believe this would help clusters based on our present theoretical framework.  The population studied were more classic headaches (tension, migraine) and the results were ok but not great.  Being a meta analysis it has some validity but applying to Clusters (which are not a primary headache disorder) would be a reach.  Not a lot of side effects (or so they say) so giving it a try might be a consideration but it would be a shot in the dark.

Share this post


Link to post
Share on other sites

CHfather, I'm off topic on this one but did you think about Cymbalta/Duloxetin? Did not find this term using the search function but I'm sure it is known to this portal. I've got some side effects so I stoped. Not having major problems using 1gr verapamil per day I left Cymbalta behind. Do you know this med? For me it worked well. 

Share this post


Link to post
Share on other sites

the side effects to me: lost of sense of taste at an impressive level. Lost of appetite and sense of permanent vomiting. Cymbalta did really nock out the attacks within a short time of period. I do not remember exactly time spend until the med start working but it mast haven been just a couple of days in order to work for me. It is an anti-depressant but as most of them do not work for me so there is just another reason for not taking the Cymbalta way.

As always, this side effects are known amongst 5'000 others ;) , but everybody in his particular state in time has different reactions.

 

Share this post


Link to post
Share on other sites

Cymbalta is a pretty good med for nerve pain all around. My Mom was on it for her fibromyalgia. She didn't have any nausea or anything, just some hives. (She's not on it any more.) So it may work for CH too.

Another that's off topic, that you might look into, is Zonegran / Zonisamide. It's kind of like Topamax's little sister but without such severe side effects. Carbonic Anhydrase Inhibitor. Basically it has way less brain fog.

Share this post


Link to post
Share on other sites

Hey, Pixie . . .  Thanks, and it's always nice to see you around these parts.  Hoping things are going well for you,

Share this post


Link to post
Share on other sites

They're going pretty good as far as I'm concerned. I'll probably do an update post at some point. <3

Share this post


Link to post
Share on other sites

I know this is an old thread but figured I'd share in the hopes that it helps someone. I've had CCH since July of 2017, went through the whole routine verapamil, O2 nothing worked well. In Spring 2018 was put on Memantine and it has noticeably helped. Side effects for me are actually positive as it greatly reduced anxiety at work, other than that no side effects. Currently 20mg a day.

  • Like 1

Share this post


Link to post
Share on other sites

I just heard of memantine and will ask my CCH husband's neurologist about it. Thanks for posting your info on this.

Share this post


Link to post
Share on other sites
On 3/14/2019 at 4:22 PM, Chronic2017 said:

I know this is an old thread but figured I'd share in the hopes that it helps someone. I've had CCH since July of 2017, went through the whole routine verapamil, O2 nothing worked well. In Spring 2018 was put on Memantine and it has noticeably helped. Side effects for me are actually positive as it greatly reduced anxiety at work, other than that no side effects. Currently 20mg a day.

Hi, just wondering if the memantine is still helping? Any update would be appreciated! Thanks kindly!

Share this post


Link to post
Share on other sites

Yes, it's still helping me. It takes about a week to fully kick in and start having a noticeable effect. Be aware that it does have a very long half-life of 60-100 hours, so if your husband stops taking it at any point, it will take a week or 2 to fully clear his system. Another word of caution - do NOT bust while taking memantine. One of it's effects is that it reduces or resets any drug tolerances. I found this out taking 3 grams of mushrooms and had an unplanned level 5 trip with a full on break from reality - the experience was on par with descriptions of 10-15 gram trips. Thankfully I didn't do anything bad, but it scared the hell outta my wife (and me). We never fully figured out if it reduced busting's effectiveness, but it may very well interfere with busting. Since this happened, whenever I've busted, I wait 2 weeks minimum from my last dose of memantine. Please be extremely careful if considering busting while on memantine!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×