memantine experiences

[cyberdog]

I apologize for the repeat topic, but I was writing here after MomWithOCDSon advised that many PANDAS users infrequently check the other forums.

 

I was just curious if anyone (or their children) had been having success with low doses of Memantine? I am freakishly sensitive to medication (a slow metabolizer, as my psychiatrist postulates) and have tried just about everything to treat severe OCD and ADD -- either with debilitating side-effects, or a lack of efficacy.

 

10mg and 15mg of Memantine exacerbated my anxiety and caused agitation. I tapered back to 5mg, which was more tolerable, but still increased anxiety. I'm now planning on trying 2.5mg and would like to hear of any positive stories, just to keep morale up, as I am growing rather desperate and hopeless. I don't expect any miracles, but if it could ease the constant phobic avoidance, inner tension, etc. that would be a nice start.

[twoplusone]

I can share my observations that (in people treating their children) most people are going very low and slow. Start with 1/8th to 1/4 dose (if sensitive) only once a day, then add same small dose for the second time and alternate raising back and forth those two times a day. My son is one of the people who doesn't find it particularly calming, even though it is supposed to be and I have heard this story in others. For some, it is a miracle but even some of them had to go slow. My son couldn't take it past noon at first and now can take up until 1 without sleep disturbance. You may need to divide your dose three times a day, but my son's reaction is very dose dependent. Higher isn't better here for him, and he usually can take massive amounts of a med. I would say it puts him in a better mood, he is more even, and he is finally able to remember what happened at school, the songs they sing and the routine. My son is not really able to articulate his OCD, I can just tell when it's better and it is.

 

I wish you luck and hope you find a good dose. Some meds aren't for everyone. GABA, taurine, and magnesium are all calming for my son.

[lfran]

Nothing to add on that med, but I will mention something else.

 

A lot of the kids here are showing up to have a mutation in their folate metabolism (and the folate pathway feeds into neurotransmitter formation.) This mutation means that they can't process folic acid very well at all, but there is both a prescription and an OTC version of an "active" form of folate called methylfolate that bypasses the blockage caused by the mutation.

 

My DS11 has this and when we started on the methylfolate the anxiety dropped down significantly. Methylfolate is also known to help with depression. That's one of the conditions that the prescription brand is used for.

 

The test is one your doctor can order. It is called MTHFR, DNA.

 

Hope this helps. If you decide to go this route and it helps, would you re-post and let me know?

 

 

I apologize for the repeat topic, but I was writing here after MomWithOCDSon advised that many PANDAS users infrequently check the other forums.

 

I was just curious if anyone (or their children) had been having success with low doses of Memantine? I am freakishly sensitive to medication (a slow metabolizer, as my psychiatrist postulates) and have tried just about everything to treat severe OCD and ADD -- either with debilitating side-effects, or a lack of efficacy.

 

10mg and 15mg of Memantine exacerbated my anxiety and caused agitation. I tapered back to 5mg, which was more tolerable, but still increased anxiety. I'm now planning on trying 2.5mg and would like to hear of any positive stories, just to keep morale up, as I am growing rather desperate and hopeless. I don't expect any miracles, but if it could ease the constant phobic avoidance, inner tension, etc. that would be a nice start.

[cyberdog]

I can share my observations that (in people treating their children) most people are going very low and slow. Start with 1/8th to 1/4 dose (if sensitive) only once a day, then add same small dose for the second time and alternate raising back and forth those two times a day. My son is one of the people who doesn't find it particularly calming, even though it is supposed to be and I have heard this story in others. For some, it is a miracle but even some of them had to go slow. My son couldn't take it past noon at first and now can take up until 1 without sleep disturbance. You may need to divide your dose three times a day, but my son's reaction is very dose dependent. Higher isn't better here for him, and he usually can take massive amounts of a med. I would say it puts him in a better mood, he is more even, and he is finally able to remember what happened at school, the songs they sing and the routine. My son is not really able to articulate his OCD, I can just tell when it's better and it is.

 

I wish you luck and hope you find a good dose. Some meds aren't for everyone. GABA, taurine, and magnesium are all calming for my son.

 

Thank you for your response twoplusone. Yes, I was hoping it would be calming .. I started pretty low (2.5mg) and raised it by 2.5mg every five days, but either the dose was too high or my titration was just too fast. I did give 10mg and 15mg two weeks respectively, however, and did not adapt.

 

I lowered back to just 2.5mg taken at 10am four days ago. So far, it's been causing some weakness/fatigue and does disturb my sleep, but I'll keep pushing ahead with this small dose to see if I adjust at all; if there's no change after a week, I'll give up.

 

I'm glad your son is seeing benefits on it.

[cyberdog]

Nothing to add on that med, but I will mention something else.

 

A lot of the kids here are showing up to have a mutation in their folate metabolism (and the folate pathway feeds into neurotransmitter formation.) This mutation means that they can't process folic acid very well at all, but there is both a prescription and an OTC version of an "active" form of folate called methylfolate that bypasses the blockage caused by the mutation.

 

My DS11 has this and when we started on the methylfolate the anxiety dropped down significantly. Methylfolate is also known to help with depression. That's one of the conditions that the prescription brand is used for.

 

The test is one your doctor can order. It is called MTHFR, DNA.

 

Hope this helps. If you decide to go this route and it helps, would you re-post and let me know?

 

 

 

Thank you for the suggestion, lfran. Unfortunately, I can't afford the genetic test at the moment, but someone I know is having tremendous success with methylfolate and recommended I try it. I have experimented with a full dose of the Solgar brand in the past (800mcg), but actually found it too stimulating and agitating.

 

Do some children (including your own?) find they are quite sensitive and have to start slow with the methylfolate? I've experimented with just 100mcg (1/8 of a tablet) once or twice in the past month but don't think I noticed anything significant (though it's been hard to tell, since I was on higher doses of Memantine, which, as I alluded two in my first post, was causing a lot of anxiety anyway).

[PowPow]

My child is on Rilutek, another glutamate modulating drug.

I think it is helpful

[twoplusone]

You absolutely have to be on mB-12 while taking folinic so that could be the issue if you were not.