Memantine for Aspergers?

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Aspie1983
Posts: 23
Joined: Mon Oct 16, 2017 8:56 am

Memantine for Aspergers?

Postby Aspie1983 » Wed Nov 29, 2017 8:05 am

Has anyone tried this, for ASPERGERS!!!, not other forms of autism please, things can get confusing with the broad term 'autism'.

FatherOf2
Posts: 1665
Joined: Mon Mar 11, 2013 1:37 am

Re: Memantine for Aspergers?

Postby FatherOf2 » Wed Nov 29, 2017 10:40 am

It doesn't matter who uses memantine, Aspergers, Autism or Alzhemeir's (triple-A), whatever the effect it will be temporary. If you look at the score vs time graphs for those on Namenda and placebo from Alzheimer's studies, you will see that those on Namenda regress to the same score as those on placebo about 3 moths later. You will need to keep increasing the dose to keep the effect until you reach the maximum recommended dose, which is 28mg 1x/day. A perfect example of that is the testimony of Cara Winter on epiphanyesd, where you post too: https://epiphanyasd.blogspot.com/2016/07/memantine-yet-another-failed-autism.html. She started her 9yo son on Namenda 5mg 2x/day in Oct 2016 and increased the dose to 40mg 2x/day within less than a year. That is way above the maximum recommended dose and close to the dose at which neurons start dying, forming brain lesions (about 100mg /day if I remember it correctly), not to mention renal and hepatic injuries. The main effect from Namenda, as you probably already know, is antagonism of NMDA receptors and agonism of D2 dopamine receptors. Since you react well to higher dopamine, you should see calming effect from blocking NMDAR with focus from activated D2. Just keep in mind that blocking D2 receptors is the common primary action for ALL antipsychotics, including clozapine and quetiapine.

Marya
Posts: 214
Joined: Tue Feb 21, 2017 4:14 pm

Re: Memantine for Aspergers?

Postby Marya » Sat Dec 09, 2017 8:44 am

Aspie1983 wrote:Has anyone tried this, for ASPERGERS!!!, not other forms of autism please, things can get confusing with the broad term 'autism'.

Hi Aspie, are you still taking CDP-Choline? If so, how do you feel so far?

Aspie1983
Posts: 23
Joined: Mon Oct 16, 2017 8:56 am

Re: Memantine for Aspergers?

Postby Aspie1983 » Sat Dec 09, 2017 3:51 pm

Hey Marya,

I have stopped cdp-choline and started namenda yesterday 5mg, noticed it from the very dose after about 3hours.

Positive effects:
* turning things that have been bothering me in daily life for a while into motivation to get them done
* pretty much complete elimination of analyzing every situation and predicting the possible outcomes.
* being able to let go
* being able to sit and relax
* minor excitement when talking to people
* more thoughts coming from the soul so to speak instead of a more logic approach

Negative effects:
* some minor headache/neckpain/earpain
* somewhat spaced out so to speak (guess this is the reason the overanalyzing is eleminated - however nACHr7 receptors upregulate with chronic memantine treatment)


Note this has only been day2, I am seeing my psychiatrist upcoming wednesday and discussing a possible increasing of dose (20mg apparantly is the most used dose for aspergers/adhd/high functioning autism).

To fatherof2:

I strongly disagree, aspergers and some other forms of autism have lack of pruning, why is it that after an alcohol binge (12 beers or so) the day after I feel 100% cured? thats right, cause the excess synapses are dieing off and im a normal human being for a few hours, till homeostasis strikes.

Since you made your post about epiphanyblogspot on namenda someone called Olim has also made a post, I suggest you take a good look at that, also what her sons doctor said about namenda!

Cara:

"Sorry it's taken me so long to reply, everyone! I didn't have any notification that people had asked me questions!

At any rate, my son is now 10 years old, and we've upp'd his dose a couple times since my post was written. He is now on 40mg 2x a day, and doing VERY well; he's been on this dose for over a year."

Olim:

"olim7 December 2017 at 15:29
I just want to second Cara's points here. My son has been on one 21mg tablet daily for 18 months and it has been a night and day improvement. Very similar in that while he is largely high functioning, by about 5th grade school work (at school or at home) had reached the point where it was almost impossible for him to do. Now he is off his IEP, has followed his brother to a private school (his choice! we'd have kept him public worrying about IEP resource availability) and is getting straight A's in 7th grade on a much tougher curriculum. He comes home from school every day and does his homework before his parents even get home. He stays after school for clubs, and has developed a group of friends. Night and day isn't the half of it.

Certainly this is anecdotal and non-scientific, but his doctor has seen evidence like this across the patients he has treated. When I pointed out the studies, the response was: wrong population (works best on higher functioning) and too low dose. I buy this and hope that newer studies open the door to this treatment to more kids.

Final story: when we started on Namenda, the doctor told us that our son would ask us how our day was within a week. This prediction was eerily accurate, and had *never* occurred before in our ASD child."

Both are reporting pretty much very good improvement, olim her son has been on the same dose for 18months!!! and Cara her son has been on 40mg for over a year!

Just because memantine doesnt work on paper for most forms of autism, doesnt mean it doesnt work for others. Im pretty that memantine really shines at those with aspergers/hfa.
Also, screw scientists and 'normal' that claim to know it all people, at the end of the day it takes someone with autism to feel if some thing is working or not. I have gone through over 20 prescription meds in the past because scientists said at that time ssri's and antipsychotics were best for my condition, well guess what it is now pretty much accepted science that most forms of autism have too much serotonin.

On top of that memantine also targets PPI, one of the only few drugs that I know can do this, it seems the 20mg dose is the best at that:

The effects of memantine on prepulse inhibition.
https://www.ncbi.nlm.nih.gov/pubmed/19242406

Aspie1983
Posts: 23
Joined: Mon Oct 16, 2017 8:56 am

Re: Memantine for Aspergers?

Postby Aspie1983 » Sat Dec 09, 2017 4:15 pm

FatherOf2 wrote:It doesn't matter who uses memantine, Aspergers, Autism or Alzhemeir's (triple-A), whatever the effect it will be temporary. If you look at the score vs time graphs for those on Namenda and placebo from Alzheimer's studies, you will see that those on Namenda regress to the same score as those on placebo about 3 moths later. You will need to keep increasing the dose to keep the effect until you reach the maximum recommended dose, which is 28mg 1x/day. A perfect example of that is the testimony of Cara Winter on epiphanyesd, where you post too: https://epiphanyasd.blogspot.com/2016/07/memantine-yet-another-failed-autism.html. She started her 9yo son on Namenda 5mg 2x/day in Oct 2016 and increased the dose to 40mg 2x/day within less than a year. That is way above the maximum recommended dose and close to the dose at which neurons start dying, forming brain lesions (about 100mg /day if I remember it correctly), not to mention renal and hepatic injuries. The main effect from Namenda, as you probably already know, is antagonism of NMDA receptors and agonism of D2 dopamine receptors. Since you react well to higher dopamine, you should see calming effect from blocking NMDAR with focus from activated D2. Just keep in mind that blocking D2 receptors is the common primary action for ALL antipsychotics, including clozapine and quetiapine.


Show me one paper of memantine causing Olney's lesions in humans.
Look fatherof2 I appreciate your time and effort you put into responding to people on here, however consider that people who post here often use the broad description as autism as one and the same, different brain areas, different neurotransmitters come into play with different form of autism...

FatherOf2
Posts: 1665
Joined: Mon Mar 11, 2013 1:37 am

Re: Memantine for Aspergers?

Postby FatherOf2 » Sat Dec 09, 2017 5:40 pm

Aspie1983 wrote:Show me one paper of memantine causing Olney's lesions in humans.
Look fatherof2 I appreciate your time and effort you put into responding to people on here, however consider that people who post here often use the broad description as autism as one and the same, different brain areas, different neurotransmitters come into play with different form of autism...

I agree that there are different autism causes, and there is no single treatment that is good for everyone. Being a farther of an autistic boy, I spent the last 6 years to understand this condition, read lots of research papers and several books on this topic, visited dozens of doctors (keep in mind each doctor has his/her own view), talked to dozens of local parents and am visiting 5 autism-related boards on regular basis. So, I know that we are all different. That is why I suggest trying supplements/drugs rather than blindly trusting individuals and their theories of what would work and what wouldn't.

I am glad that Memantine is helping you. My main point wasn't that it wouldn't help but it would help only temporarily requiring you to constantly raise the dose until you reach 20mg/day. Cara is giving her 10yo son 80mg/day, which 4x the maximum recommended dose even for ADULTS! Once you reach the target dose, the effect of Memantine will diminish within several months due to the tolerance buildup (NMDA receptors get upregulated due to the antagonistic action of Memantine). The comparison to alcohol is OK. Alcohol also blocks NMDA receptors and its chronic use also leads to tolerance, requiring higher and higher doses to achieve the same effect. We all know about it. The only way to avoid tolerance is to cycle medication ON/OFF instead of increasing it to dangerous doses.

I can't show you human data on lesions from Memantine. But, from the FDA site https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/021487s010s012s014,021627s008lbl.pdf:
Memantine induced neuronal lesions (vacuolation and necrosis) in the multipolar and pyramidal cells in cortical layers III and IV of the posterior cingulate and retrosplenial neocortices in rats, similar to those which are known to occur in rodents administered other NMDA receptor antagonists. Lesions were seen after a single dose of memantine. In a study in which rats were given daily oral doses of memantine for 14 days, the no-effect dose for neuronal necrosis was 6 times the maximum recommended human dose of 20 mg/day on a mg/m2 basis

If a parent feels comfortable giving her child 4x MRHD of Memantine neglecting the animal studies just because no human was stupid enough to take doses that cause lesions, then good luck.

By the way, my alcohol withdrawal symptoms are totally different from yours. I have strong headaches as if someone beat me up on the head.

FatherOf2
Posts: 1665
Joined: Mon Mar 11, 2013 1:37 am

Re: Memantine for Aspergers?

Postby FatherOf2 » Sun Dec 10, 2017 12:33 am

Came across this old clinical trial of Memantine for multiple sclerosis https://clinicaltrials.gov/ct2/show/NCT00638833. It was halted due to unexpected side-effects: reversible and mild to moderate neurological impairment https://www.ncbi.nlm.nih.gov/pubmed/19092106
Although 19 patients had been included, the trial was halted after nine patients reported a worsening of their neurologic symptoms that deteriorated their quality of life. Seven of the nine patients in the memantine arm had blurred vision, fatigue, severe headache, increased muscle weakness, walking difficulties, or unstable gait. Only two patients in the placebo group reported neurologic symptoms and in both cases they were related with changes in their disease-modifying therapy. The adverse events only occurred on reaching the maximum dose (30 mg/day). After stopping medication, the patients reverted to their baseline disability within a few days.


Here is another one: https://www.ncbi.nlm.nih.gov/pubmed/20483885
Subjects on memantine had no serious adverse events (AEs) but had more fatigue and neurological AEs as well as, per family members' reports, less cognitive improvement and greater neuropsychiatric symptoms than subjects on placebo.


Here is a more recent study of Memantine for multiple sclerosis:
Memantine... has been negatively evaluated for the treatment of cognitive disorders of multiple sclerosis, but these studies were conducted only during short-term administration and on a heterogeneous group of patients with different forms of the disease. In addition, many adverse reactions were observed in these patients. The purpose of this study was to examine the efficacy and safety of the long-term administration of memantine as a symptomatic treatment for cognitive disorders in patients with relapsing-remitting multiple sclerosis (RR-MS)... The participants were assigned to receive memantine (20 mg/day) or a placebo for 52 weeks... Neurological and psychiatric adverse events were significantly higher in the memantine group than in the placebo group, and these parameters were higher than those reported in the product literature of memantine.
CONCLUSIONS: No differences between the placebo and memantine groups were observed. Nevertheless, the tolerability of memantine was significantly worse than expected.


If autism is an autoimmune disorder like MS (the "autoimmune autism" is considered to be caused by focal inflammation in the brain and MS by global inflammation), then Memantine may not be the right treatment.

Nikkie111
Posts: 356
Joined: Thu Sep 24, 2015 6:26 am

Re: Memantine for Aspergers?

Postby Nikkie111 » Sun Dec 10, 2017 6:26 am

Yes agreed Fo2, even if it's an immune, mast cell or viral issue memantine wouldn't help
I totally get how desperate we all are but to ignore the health warnings would be madness especially for little kids . Thanks Fo2 for bringing these to our attention

Marya
Posts: 214
Joined: Tue Feb 21, 2017 4:14 pm

Re: Memantine for Aspergers?

Postby Marya » Sun Dec 10, 2017 8:57 am

Aspie1983 wrote:Hey Marya,

I have stopped cdp-choline and started namenda yesterday 5mg, noticed it from the very dose after about 3hours.

Positive effects:
* turning things that have been bothering me in daily life for a while into motivation to get them done
* pretty much complete elimination of analyzing every situation and predicting the possible outcomes.
* being able to let go
* being able to sit and relax
* minor excitement when talking to people
* more thoughts coming from the soul so to speak instead of a more logic approach

Negative effects:
* some minor headache/neckpain/earpain
* somewhat spaced out so to speak (guess this is the reason the overanalyzing is eleminated - however nACHr7 receptors upregulate with chronic memantine treatment)

Hi Aspie, I'm glad that you feel well on Namenda. I had the same positive effects while taking CDP-Choline and NAC, espeacially motivation, being able to let go (not letting go had a serious negative impact on my life), more thoughts coming( this is was dramtically when I've started taking Choline) So I've decided to try Piracetam for above issues (motivation, speech, creative thoughts, and letting go)


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