low doses of Memantine

[cyberdog]

I'm a 27 year old male who seems to be extremely sensitive to medication. I have yet to find anything I can take for my combination of severe OCD and ADD that doesn't cause burdensome side-effects, or otherwise lacks efficacy.

 

I was trying Memantine as a last-ditch attempt, but found it made me more anxious and agitated at 10-15mg; I tried tapering back down to 5mg and still feel overstimulated.

 

Before I give up, I was wondering if anyone (or their child?) had ever found relief on 2.5mg, or even less?

[MomWithOCDSon]

Sorry, we've not tried memantine/Namenda, though my son does benefit from two other glutamate-modulating meds: Lamictal and n-acetylceisteine (NAC).

 

Many of us, however, have found that some of our kids are atypically sensitive to various psych meds, and some also respond poorly to NAC. Don't know if you've heard of PANDAS or PANS, but this is autoimmune disease that can result in neuropsychiatric behaviors such as OCD, ADD, ADHD, tics, general anxiety, etc. It is infection triggered (strep, walking pneumonia, Epstein Barr, lyme, etc.), and though it has been found most prevalently in kids (hence the "P" for "pediatric"), some adults have been identified with it, also. If you're interested/curious/think it might apply to you in any way, the PANDAS/PANS forum here has a ton of information.

 

At any rate, PANDAS/PANS kids tend to be very sensitive to SSRIs and other medications, so that's one thing that comes to mind. Another piece of the puzzle that has contributed for some in terms of their response to meds/ability to process it properly is methylation, usually due to a gene mutation (MTHFR). I'm not very well versed on that, but, again, if you use the Search function here, you'll come up with some pretty good discussions about it, links to papers and web sites with additional information, etc.

 

Ultimately, some of us have found that, yes, in very small amounts, psych meds can help even our most sensitive kids. But if you've had trouble with one after another of these classifications of meds and your OCD/ADD are still intrusive in terms of your daily life, there might be something else afoot that, if addressed, would improve your situation either with or without these meds.

 

Good luck!

[cyberdog]

That for your reply, Nancy. I tried NAC but was unable to tolerate it, as it induced respiratory depression; Lamictal is one of the few meds I have yet to experiment with but I won't write it off.

 

There may be some kind of infection-thing going on, but I had quite a comprehensive battery of bloodwork done recently and it checked out okay. To be honest, I really just want some symptomatic control at this point, so I can think straight and even explore other options like a chronic infection.

 

I'll push on with the 2.5mg and see if there's any results. Was hoping I could possibly hear some firsthand experiences with small Namenda doses .. I tried searching the archives, but couldn't find anything specific in relation to OCD (only tics/Autism, I believe).

[MomWithOCDSon]

I've only heard of a couple of people here trying Namenda with their kids; if you searched and found any posts regarding it's use, then maybe you could try PM-ing some of the posters? One I specifically recall is Melanie, but her son, in addition to having PANDAS/PANS also is autistic, so I'm not sure that would be a ready comparison for you, either. Most of the discussion that I can recall has taken place on the PANDAS/PANs forum rather than this one, and many of them don't check in here very often, if at all.

 

I'll also say, Lamictal hasn't actually diminished OCD in my son's case; what's it's done, however, is taken away his emotional "marriage" to the OCD, made it easier for him to look at the behaviors more objectively rather than feeling threatened when we (his parents), his therapist or even he himself try to get between him and a compulsion. It's made him more "rational" and less emotional about fighting back at it.

 

I'm going to share with you one more anecdote, in the event you might decide to potentially go after an infection, even if you're not certain it's there or where it might be . . . . My son was diagnosed with OCD at 6, and he managed to be functional and happy with first just therapy alone, and then at 8.5 years, the addition of an SSRI (Lexapro). Then, at 12, it was like he fell off the edge of the world. His OCD became so bad and so intrusive that he couldn't leave his room; he spent most of his day curled up in the fetal position on the floor because anything and everything caused him distress. Anything and everything involved some elaborate ritual that zapped him of his time and strength. So he just gave up and did nothing. His psych kept trying different meds and different doses, but nothing seemd to help him, and some of them made him worse or just knocked him out (Zyprexa, Seroquel). We had to withdraw him from school. As an example of the grip of the OCD: He'd take a shower and, 30 seconds after he stepped out, start screaming about how he had to take another one immediately because he'd become contaminated when his hair brushed the sink countertop. It was surreal.

 

He was classically asympotmatic for strep . . . never had a sore throat in his life, never had a positive strep culture. But I finally got someone to listen to me regarding PANDAS/PANS, and we started my son on Augmentin XR (1,000 mg., twice daily). Within 48 hours, after 4 doses, he was like a different kid. Not back to the way he'd been before he'd fallen so badly into the depths of his OCD, but still miles more functional than he'd been just 2 days before. He came out of his room. He ate dinner at the table with his dad and me for the first time in 3 months. Within another 3 months, he was back in school and climbing, daily, out of the hole he'd fallen into. And he was happy again.

 

So, what I'm saying is, if you've tried the cavalcade of various psych meds to no avail, and "regular" doses of these meds seem to only intensify your activation/anxiety, if you could get a doctor to prescribe a beta-lactam antibiotic (there's research that suggests beta-lactam abx may be glutamate modulatory, too), would you try it? And see how you feel after, say, a week? I have a lot of research on the topic that you're welcome to, if you're interested. Just PM me.

 

Sorry I'm not of more help with respect to the memantine . . . I'm sure it's worth a try, too. There're just so many things about your situation that resonate with what we've been through in the last 3 years, and I know you want relief. I hope you find it soon!

[cyberdog]

Thanks MWOS. I have to commend you on the level of dedication and insight you show into your son's affliction. Even at 27, trying to contend with all of this alone is next-to-impossible -- since my symptom-onset was a lot later in life (18), I suppose my parents got used to me pursuing treatment independently and have never really bothered to investigate stuff at their own behest.

 

Anyway, "f[allen] off the edge of the world" sounds like a fair descriptor -- my symptoms are currently crippling, though they were being exacerbated by the higher doses of Memantine, so I'll have to see if 2.5mg bears any fruits.

 

There's an integrative medicine GP I see from time-to-time. I'll try convince them to prescribe an anti-biotic; I have nothing to lose, since a huge part of me is beginning to give up after battling this all for 8+ years.

 

I've experimented with methylfolate before and it produced agitation when I took a full tablet of the Solgar brand (800mcg); I couldn't tolerate methyl-b12 either. Someone I'm in contact with, however, experienced a huge turnaround in depressive symptoms with methylfolate, so I've begun by taking just 100mcg at night.

 

I'm also Vitamin D deficient, though, again, I coulda sworn supplementation was increasing anxiety, but my GP insists I persist with it.

 

All of this feels so overwhelming that I don't really know where to begin. Since my symptoms are already so extreme, it can be difficult to ascertain whether something's making me better or worse. I either get too impulsive and just add a bunch of new stuff in at once, or, conversely, get cold feet and then become to afraid to start anything new.

[MomWithOCDSon]

All the best to you, Cyberdog, and try to hang in there and not get too discouraged. I hope that, even though you're an adult now and making your own decisions, you've got some support among friends and family while you try to regain your balance here. This ACN "family," however, has been a world of cyber-support for me and my family, so if you take advantage of it, you'll find lots of cyber-hugs, ideas, research links, etc. here, as well.

 

The newer and ongoing research on antibiotics and mental health is pretty compelling, with beta-lactams being researched in conjunction with major depression, schizophrenia and even autism. They're using an old tuberculosis antibiotic -- d-cycloserine -- in conjunction with ERP therapy for OCD. If your integrative doctor needs any research to back up a trial, he should be able to find it fairly easily.

 

Good luck!