Namenda (Memantine)

[nryanh94]

I’ve been on Namenda for roughly 3 days. I’m not sure if it will last but it has almost completely cleared my brain fog and has improved my sleep greatly.

 

[Learner1]

I had to look up namenda. Most people can't afford brand name and their insurance doesn't cover it, so they're stuck with taking a generic, which in this case looks like is memantine.

Apparently memantine is only supposed to work for severe Alzheimer's patients. What sort of a doctor prescribe this for you, with what rationale? And what labs did you have that showed that you had a memantine deficiency?

Glad it's helped you for 3 days. Looks like it has warnings for severe liver and kidney damage and deadly allergic reactions. Additionally these look to be the side effects:

• dizziness.
• confusion.
• aggression.
• depression.
• headache.
• sleepiness.
• diarrhea.
• constipation.

Good luck.

 

[hmnr asg]

I was prescribed memantine a few years back for trigeminal neuralgia (not sure why) but never tried it. This is definitely a medication that's on my todo list. I hope it keeps improving your condition. Please keep us posted about your progress.

ps every drug has side effects. Listen to your body, that's the most important thing! if we avoided any medication that had side effects we wouldn't even be taking Advil.

good luck!

 

[Learner1]

I was prescribed memantine a few years back for trigeminal neuralgia (not sure why) but never tried it. This is definitely a medication that's on my todo list. I hope it keeps improving your condition. Please keep us posted about your progress.

ps every drug has side effects. Listen to your body, that's the most important thing! if we avoided any medication that had side effects we wouldn't even be taking Advil.

good luck!

Well, Advil would not be on my list as a star drug without any risks.

https://www.medicalnewstoday.com/articles/ibuprofen-could-impact-liver-health

 

[hmnr asg]

Well, Advil would not be on my list as a star drug without any risks.

https://www.medicalnewstoday.com/articles/ibuprofen-could-impact-liver-health

Lets not hijack this thread by having the same old tired argument about what is acceptable risk-reward tradeoffs. I think this is a drug that could have great potential and I will try it myself in the future.

 

[nryanh94]

I had to look up namenda. Most people can't afford brand name and their insurance doesn't cover it, so they're stuck with taking a generic, which in this case looks like is memantine.

Apparently memantine is only supposed to work for severe Alzheimer's patients. What sort of a doctor prescribe this for you, with what rationale? And what labs did you have that showed that you had a memantine deficiency?

Glad it's helped you for 3 days. Looks like it has warnings for severe liver and kidney damage and deadly allergic reactions. Additionally these look to be the side effects:

• dizziness.
• confusion.
• aggression.
• depression.
• headache.
• sleepiness.
• diarrhea.
• constipation.

Good luck.

it was prescribed by an ME/CFS physician, and her rationale was it had started to be used in the treatment of long Covid patients. The belief is that it has strong anti inflammatory properties in the brain.

fwiw she said Namenda but looking at the bottle I did get the generic form memantine, so I’m being helped by the generic and have altered the title to reflect such. As for the liver and kidney toxicity, I’m already being tested once a month for that due to Valcyte, so I assume she feels ok about that due to the ongoing monitoring

 

[Learner1]

it was prescribed by an ME/CFS physician, and her rationale was it had started to be used in the treatment of long Covid patients. The belief is that it has strong anti inflammatory properties in the brain.

fwiw she said Namenda but looking at the bottle I did get the generic form memantine, so I’m being helped by the generic and have altered the title to reflect such. As for the liver and kidney toxicity, I’m already being tested once a month for that due to Valcyte, so I assume she feels ok about that due to the ongoing monitoring

It always blows my mind that these doctors can't possibly look at curcumin and boswellia, both of which have fantastic anti-inflammatory properties for the brain. I use both to manage brain swelling in my IVIG. My doctor told me that they use Boswellia for glioblastoma patients and conventional medicine.

 

[Learner1]

https://www.mskcc.org/cancer-care/integrative-medicine/herbs/boswellia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073929/

 

[nryanh94]

It always blows my mind that these doctors can't possibly look at curcumin and boswellia, both of which have fantastic anti-inflammatory properties for the brain. I use both to manage brain swelling in my IVIG. My doctor told me that they use Boswellia for glioblastoma patients and conventional medicine.

Never taken boswelia, but took Curcumin at 2000 mg a day for a year and felt no benefits. Discontinued it about 6 months ago and had no noticeable decline at the time

 

[ljimbo423]

Here's an article from Health Rising-

Memantine (Axura, Akatinol) in Fibromyalgia and Chronic Fatigue Syndrome

Memantine (Axura, Akatinol) is…

An NMDA receptor antagonist that is FDA approved to treat moderate to severe Alzheimer’s disease. A derivative of amantadine, memantine has been used for over 20 years to treat Alzheimer’s disease. Memantine blocks glutamate from exciting the NMDA receptors that believed to contribute to central sensitization. Memantine also may down-regulate 5-HT3 receptors that can contribute to pain sensitivity, enhance dopamine activity and inhibit neuroinflammation.



Memantine targets NMDA receptors that contribute to pain

Located in the dorsal horn of the spinal cord, the NMDA receptors are found in prime territory to regulate pain levels. Dorsal horn neurons receive and filter sensory information from the body and transmit it to the brain. Over activation of these neurons is believed to contribute to hypersensitivity pain states (central sensitization).


NMDA receptor affecting drugs such as ketamine are often used in anesthesia. . (Dextromethorphan, methadone and tramadol are other NMDA receptor antagonists.).


Long term use of some NMDA receptor affecting drugs has proved problematic; one hope has been that memantine will be a better long-term solution.


A relatively new drug memantine is being assessed in a wide variety of conditions including ADHD, neuropathic pain, anxiety, epilepsy, SLS, depression, multiple sclerosis, autism, migraine, amyotrophic lateral sclerosis and others.


Memantine reduced neuropathic pain and improved cognition in laboratory animals and reduced pro-inflammatory cytokine expression and neurological issues in multiple sclerosis animal models. Memantine improved cognition and speech fluency in a large Alzheimer’s study. Memantine reduced central nervous system methylmercury damage in laboratory animals.

Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) Studies

Studies indicating raised levels glutamate levels in the insula, hippocampus, basal ganglia, posterior cingulate cortex regions (the ‘pain matrix’) of the brains of FM patients has ignited some interest in memantine. Memantine improved cognition, depression and global function and produced a non-significant trend toward reduced pain in a small (n=10), preliminary, uncontrolled trial.


Memantine and Lyrica were hypothesized to have synergistic effects in fibromyalgia but no trials have yet occurred.

Side Effects

According to Wikipedia, Memantine is general well tolerated. (However check out Wikipedia’s page on NMDA receptor antagonists). Spanish fibromyalgia researchers report “Memantine has shown a very low incidence of side effects in clinical trials on humans”.


Adverse drug reactions can include confusion, dizziness, drowsiness, headache, insomnia, agitation, and/or hallucinations and others. Overdoses of NMDA receptor antagonists can cause hallucinations, paranoid delusions, confusion, difficulty concentrating, agitation, mood alterations, nightmares, catatonia, anesthesia, and learning and memory problems. Abusers of these drugs can have significant cognitive problems.

 

[katabasis]

Memantine is a really unique drug, and one that I think may benefit a subset of ME/CFS sufferers. I've been taking it for around three months now, and it has had a small but perceptible benefi in reducing the mental irritability and sensory hypersensitivity that I get during episodes of PEM. Admittedly it's been hard to gauge the true extent of its effects because I've also been dealing with recurrent C. Diff, which has greatly affected my nutritional status, exertion needs, etc.

Memantine has a few different mechanisms of action that could have therapeutic effects in the context of ME/CFS:

• It is an NMDA glutamate antagonist, which dampens excitotoxicity or just excitatory neurotransmission in general. Yet it also unbinds rapidly enough to preserve 'regular' physiological functioning of the receptor (unlike arylcyclohexylamines, for instance). Theoretically, memantine should have more efficacy when glutamate is dysregulated. NMDA antagonism may also play a role in reversing stress-induced neuronal remodeling, though it's unclear whether this is sufficient (ketamine, for instance, also has a metabolite which modulates AMPA receptors which supposedly underlies its efficacy as an antidepressant), or whether this particular effect is even relevant to ME/CFS per se.
• It is a D2 dopamine agonist, Purportedly dopamine plays an important role in central pain processing, and other dopamine agonists such as pramipexole have been shown to be efficacious in fibromyalgia. Abilifiy (aripiprazole) is another dopaminergic drug which has recently shown some use for ME/CFS - I've read that when it is used at low doses, it acts as a partial agonist of D2 receptors.
• It is an antagonist of several nicotinic acetylcholine receptors, of particular interest the alpha-7 NAchR. This is probably the main cause of the sedation and brain fog that is often seen during the early stages of memantine treatment. Acetylcholine receptors are quick to upregulate when blocked like this, though, and increasing the density of alpha-7 NAChR with memantine may be able to modulate the vagal anti-inflammatory pathway. I have not seen much research on this, though, so it's really speculation on my part.
• It is an antagonist of the 5-HT3 receptor, a mechanism shared with Zofran (ondansetron), a fairly common drug used to treat nausea and vomiting. This probably won't have much benefit for ME/CFS per se, but a lot of people with ME/CFS have gastrointestinal symptoms that may include nausea or diarrhea, which 5-HT3 antagonism may reduce.

For anyone that wants to give memantine a try, there are two things that I think are important to keep in mind that your doctor may not fully explain to you. Firstly, the half life of memantine is super long - 2.5 days to be exact. What this means practically is that it will take a long time for the drug to reach a steady concentration in your blood. If you take the drug one per day, around three quarters of the previous day's dose will still be in your system (and slightly over half the day before that, and so on). The upshot of this is it will probably take quite a while before you can accurately judge whether the drug will even help you - a couple weeks to reach a steady state, and then even more time for all the homeostatic adjustments that go on to actually take effect.

Secondly, brain fog is a common side effect of memantine. In my subjective experience, this feeling (at 10 mg per day) is not unlike taking a double dose of Benadryl. This feeling, all day every day for weeks, can be sort of daunting, but just keep in mind it is very likely temporary and reversible. I've read a lot of accounts of people who endeavor to titrate their dose to reduce the brain fog. Perhaps in some cases this will work, but I think a lot of the time you just need to have some patience. Some people (OP included, it seems) may actually see improvement in cognitive symptoms pretty quickly, which probably indicate that dopamine or glutamate is really involved in their cognitive issues to begin with.

The side effects profile outside the cognitive effects/sedation and mild things like gastrointestinal symptoms, headaches, etc. seems fairly benign. Reports of liver or kidney problems seem to be very rare. I guess the other main contraindication would be for anyone who has dealt with psychosis or anything similar, due to memantine's effects on dopamine and glutamate.

Good luck to OP or anyone else who wishes to try this.

 

[heapsreal]

An nmda inhibitor may reduce inflammation and can reduce tolerance to many meds such as benzos and stimulants. May be helpful for those wanting to come off benzos, obviously under drs supervision.

 

[Martin aka paused||M.E.]

It always blows my mind that these doctors can't possibly look at curcumin and boswellia, both of which have fantastic anti-inflammatory properties for the brain. I use both to manage brain swelling in my IVIG. My doctor told me that they use Boswellia for glioblastoma patients and conventional medicine.

Curcumin and Boswellia didn’t change anything for me.

 

[junkcrap50]

Apparently memantine is only supposed to work for severe Alzheimer's patients. What sort of a doctor prescribe this for you, with what rationale? And what labs did you have that showed that you had a memantine deficiency?

Memantine is frequently used and mentioned in the nootropic community.

 

[Learner1]

Curcumin and Boswellia didn’t change anything for me.

I've tested several "high potency" brands of curcumin and found they differ quite a bit. Perhaps the product or dose wasn't enough.

Memantine is frequently used and mentioned in the nootropic community.

I'm not so sure ME/CFS patients are the same as the nootropic community.

A recent Wall Street Journal headline:

Nootropic or Not? Brain-Booster Business Raises Concerns

Supplements that promise to sharpen memory, focus and other brain functions are prompting questions about safety

 

[hmnr asg]

I've tested several "high potency" brands of curcumin and found they differ quite a bit. Perhaps the product or dose wasn't enough.

I'm not so sure ME/CFS patients are the same as the nootropic community.

A recent Wall Street Journal headline:

Nootropic or Not? Brain-Booster Business Raises Concerns

Supplements that promise to sharpen memory, focus and other brain functions are prompting questions about safety

Believe me, if any of us could have cured ourselves with curcumin, jojoba oil, aromatherapy, or anything like that, we wouldn't be still in this position after years and years of cfs and misery.

 

[Learner1]

Believe me, if any of us could have cured ourselves with curcumin, jojoba oil, aromatherapy, or anything like that, we wouldn't be still in this position after years and years of cfs and misery.

Curcumin us an evidence-based medical treatment. It's a Cox-2 inhibitor, anti-inflammatory, broad spectrum phase 2 detoxer, anti-cancer, and there are hundreds, if not thousands of studies on its medical properties in PubMed. IV curcumin, which was amazingly helpful in reducing my brain swelling from IVIG and reversed a very serious cancer in a fellow patient, shown on CT scans, became unavailable in the US, because some drug company patented it and they are making it into expensive drug, making it out of reach for most of us.

I won't make any claims for jojoba oil or aromatherapy.

But, having been damaged by 5 different FDA-approved drugs taken as prescribed, one of which almost killed me, I have learned to look at the risks of each drug but my doctors are suggesting, because my doctors never shared the bad parts about the drugs that did the damage in advance.

Caveat emptor.

 

[hmnr asg]

But, having been damaged by 5 different FDA-approved drugs taken as prescribed, one of which almost killed me, I have learned to look at the risks of each drug but my doctors are suggesting, because my doctors never shared the bad parts about the drugs that did the damage in advance.

And i have spent the last 11 years trying every possible supplement there is with ZERO benefits. I'm ready to take some chances before i see the rest of my life pass me by while i'm imprisoned in my bed.

 

[Martin aka paused||M.E.]

I've tested several "high potency" brands of curcumin and found they differ quite a bit. Perhaps the product or dose wasn't enough.

it was micell Curcumin and I took high doses. And high doses of Boswellia

Nootropic or Not? Brain-Booster Business Raises C

And i have spent the last 11 years trying every possible supplement there is with ZERO benefits. I'm ready to take some chances before i see the rest of my life pass me by while i'm imprisoned in my bed.

Same here

 

[heapsreal]

Same here

Ditto curcumin.