Namenda (Memantine)

[Learner1]

As far as I know there are no drugs or supplements approved by FDA to treat cfs. However , off label uses are utilized by most me/cfs specialists , and the off label used for memantine could include sound sensitivity, neuropathic pain. Or cognitive dysfunction

A lot of drugs are too casually prescribed without a careful look at the the risks for ME/CFS patients, and without looking at less risky alternatives.

 

[frozenborderline]

A lot of drugs are too casually prescribed without a careful look at the the risks for ME/CFS patients, and without looking at less risky alternatives.

Agreed, (rituximab is a good example), however there is nothing showing dietary supplements to be free of those risks , or to have more benefits than drugs. Both have risks and benefits and have to be evaluated in a case by case manner

 

[Learner1]

While I have benefited from some supplements and third party sites that help to test them , and ensure quality , it should be noted that supplements have less oversight for safety and purity than pharmaceutical drugs in the US. They can be totally mislabeled , contain toxins , or just be unsafe even if they are what they say they are. I don't see drugs as fundamentally different from herbs or supplements. They're all just chemicals that one outs in ones body, that can be medicinal under the right circumstances or poison

Many drugs are manufactured overseas in plants that are not adequately monitored for safety. There have been several instances of toxic contamination of FDA approved drugs. There are carcinogens and allergens regularly used in FDA approved drugs, and many of these drugs can kill people when taken as prescribed for an FDA approved indication. According to US law, manufacturers do not have to let anyone know what they put into medications, including allergens and they don't have to disclose what plant a particular batch of drugs was made in, even if that plsnt gas had safety violations.

No, drugs aren't as safe as we'd like to think they are. I find taking supplements made by reputable manufacturers to be far less problematic.

I happen to think Advil is not really worth the side effects , but that's because I'm an aspirin fan. However sometimes you do need otc painkillers that are strong and we must choose our poisons. Pain can kill too, by raising blood pressure or vausinf suicidality and most doctors don't prescribe adequate prescription pain meds

Advil has very negative effects on the microbiome and can cause liver damage, changing the way many proteins are expressed in the liver, with more significant effects on women than men.

Aspirin can cause problems too, including bleeding problems. It also contains a major allergen, corn, which is a problem for many of us.

Understanding root causes of pain and working to reduce them, as well as finding ways of managing pain are important.

 

[Learner1]

Agreed, (rituximab is a good example), however there is nothing showing dietary supplements to be free of those risks , or to have more benefits than drugs. Both have risks and benefits and have to be evaluated in a case by case manner

Definitely, everything patients take is best prescribed individually.

I take a supplement, Huperzine A, for POTS that doesn't contain the allergens or have the unpleasant intestinal side effects of pyridostigmine (Mestinon). I find curcumin, boswellia and CBD oil to be effective and far safer than taking an NSAID. B12 and iron are far more effective than drugs for B12 deficiency or anemia.

However, Rituximab is not casually prescribed. It is expensive, difficult to get, and patients must go through many steps and fit certain criteria to get to the point it's prescribed.

 

[frozenborderline]

According to US law, manufacturers do not have to let anyone know what they put into medications, including allergens and they don't have to disclose what plant a particular batch of drugs was made in, even if that plsnt gas had safety violations.

This is as or more so true for supplements. You can look at third party testing sites , but I'm pretty sure that besides the small portion of supplements that have non governmental third party organizations doing lab testing , the vast majority of supplements are more unregulated than drugs. Furthermore I don't see any scientific or ontological difference between a drug and a supplement, there's only a legal difference. There are some supplements that would not be classified as a nutrient but would rather be classified as a drug, like phenibut or kratom or kava. Those things aren't bad necessarily, to me "drug" isn't a dirty word.

I don't particularly trust the FDA , but besides the people who have recovered from me/cfs through mold avoidance only, the vast majority of credible remission stories I've heard from me/cfs patients have involved pharmaceutical drugs, even if its only in a palliative form while they have surgery to correct the root cause. There is such thing as a necessary evil.

Compounding pharmacies can possibly reduce the problem of reacting to fillers , but they can come with their own risks, and are in fact less regulated than one would expect , in terms of sanitation standards etc.

The FDA has a history of messing up sometimes with putting drugs on the market that have too much risk and haven't been tested enough long term. Best examples are fenfluramine, and thalidomide. However , this may be a reason to avoid relatively new drugs that haven't been used enough for their problems to become more apparent , but imo its not a reason to distrust every pharmaceutical. A drug like memantine has been on the market long enough and used broadly enough that there are plenty of safety studies as well as anecdotes. Its not The new fenfluramine, or thalidomide.

 

[frozenborderline]

Aspirin can cause problems too, including bleeding problems. It also contains a major allergen, corn, which is a problem for many of us.

There's no such thing as a panacea (although I wish there was , and maybe there should be an asterisk for near-panaceas) , especially for someone with severe enough problems to necessitate surgery, but taking aspirin is a deliberate choice I make based on a lot of research and also advice from doctors . it's often effective in mcas, without the same side effects as other nsaids. The bleeding problems are less of a concern for me than the opposite given my risk factors , and I check for bruising etc.

It has been known to reduce cancer risk. One can remove the starch fillers if you get the white pills and dissolve the pill in hot water and let the fillers float to the bottom and precipitate and strain them out while drinking the acidic water.

It is not enough for my pain, but one cannot live with levels of pain like mine indefinitely, and I assure you I'm working on the root cause with more effort than I should spend . typing this is causing me pain, for example . so to really get any useful research done (although I know the main causes of my pain by now) I need to have a caregiver or assistant I can dictate A lot to.

I have a 70 percent (roughly) finished etiology model , and I feel like I understand more about my specific case than most people do about their me/cfs, but this doesn't mean I don't need palliative care. And even though I need surgery , understanding that probable root cause doesn't mean things get fixed overnight. Hence the need to treat pain, regardless of knowing root cause . if you don't treat the pain you can often degrade your morale , go crazy , or be unable to think and thus plan /research , or even be unable to make it to doctor appointments. So pain treatment is part of all of this, for those of us with bad enough pain. And aspirin is often a good part of all of it, although aspirin doesn't do enough for my pain
In fact I'm hoping my pain doctor decides to opt for either suboxone, methadone, or a fentanyl patch , given the severity of my pain and what's worked in hospital dose wise. But aspirin is not always a bad place to start. I'm more wary of Tylenol to be honest, given its toxicity , but many doctors will insist you try high dose otc stuff before prescribing anything.

I'd like to not need pain meds , but given the long and complex process of researching and finding doctors and getting them to piece my body back together, I think my life would be better with better pain relief and there's no harm in palliative care .

 

[frozenborderline]

No, drugs aren't as safe as we'd like to think they are. I find taking supplements made by reputable manufacturers to be far less problematic.

My point is sort of orthogonal to this. Some of the points you make about FDA manufacturing safety may be true , and there are some supplement companies that I've researched enough to trust, who have good reviews from third party testing. However we were discussing naturalistic fallacy and the idea supplements are automatically better. Efficacy ought to be considered to. I'm open minded about the fact that plants have many beneficial compounds that can be effective , and some supplements and minerals can be Neuro protective or helpful in some way,but there are certain conditions that can't be adequately treated without a pharmaceutical drug. Not everyone's mcas responds to quercetin or other plant compounds , and I think quercetin has more estrogenic activity than ketotifen or cromolyn , just for one example. And if someone has Major surgery , I'm assuming they will prefer morphine to most herbal medicine or magnesium , unless the herbal medicine is milk of the poppy.

I don't see a well defined line between the drug and supplement categories.

 

[raghav]

@nryanh94 What dose are you taking ? I am taking generic menantine 5 mg from yesterday night. It gave me excellent quality sleep waking up only once to go to the bathroom. Usually I will make 4-5 trips and that disrupted deep sleep.

 

[nryanh94]

@nryanh94 What dose are you taking ? I am taking generic menantine 5 mg from yesterday night. It gave me excellent quality sleep waking up only once to go to the bathroom. Usually I will make 4-5 trips and that disrupted deep sleep.

Sorry, i was at 10mg. The effect it had on my brain fog unfortunately went away. It still helps my sleep some though.

 

[mitoMAN]

Sorry, i was at 10mg. The effect it had on my brain fog unfortunately went away. It still helps my sleep some though.

So you still take it but pre-bed? I'm looking for something to help with my sleep as well.

 

[nryanh94]

So you still take it but pre-bed? I'm looking for something to help with my sleep as well.

I take it in the morning, along with abilify (though it’s quit working I’m hoping maybe it’ll start back), ldn and Valcyte.

it doesn’t make me sleepy, it just for some reason allows me to sleep almost through the night (I only wake up once or twice, before I was waking up every 30 minutes to an hour.

 

[mitoMAN]

do you feel less fatigued now with the improved sleep? Probably not right? I dont feel any different if I wake up every hour vs sleep through days. .. sadly.

 

[nryanh94]

do you feel less fatigued now with the improved sleep? Probably not right? I dont feel any different if I wake up every hour vs sleep through days. .. sadly.

Unfortunately no

 

[Dubitat]

Memantine (Namenda) is complicated. It goes through cycles of popularity in Nootropics forums. Few people continue taking it long term.

Memantine is deceptive because:

1. The acute effects during the start-up phase are very different than the chronic effects after stabilizing on Memantine. Many people like the start-up phase, but dislike the stable phase.
2. It has an extremely long half-life of around 3 days, so the start-up phase can last for a long time.

Estimates of Memantine's half-life ranges up to 80 hours. If you take 5mg on day 1, you're still going to have 80% of that dose in your body when you take the next dose 24 hours later. The rule of thumb is that steady-state dosing is achieved after 5 half-lives, which is over 2 weeks for Memantine. During this time, the person will be experiencing escalating blood concentrations, even though they're taking the same dose every day. Combine this with actual dose increases on the start-up phase can take months to stabilize.

There are many anecdotal reports of people who thought Memantine stopped working after a month or two. Usually, this coincides with reaching steady-state. It's likely that these people actually enjoyed the start-up phase but those effects disappeared as they reached steady-state and their brain had a chance to adapt to the drug.

Memantine also gets too much credit as an NMDA antagonist. It also has significant effects at 5-HT3 (Serotonin), D2 (dopamine), alpha-7 nAChR, and some low activity at the sigma-1 receptor. Memantine has been trialed for many disorders from depression to mood disorders with generally negative results. It can't be compared to traditional NMDA antagonists like Ketamine because the mechanism of action and the duration are too different.

The reports about Memantine being used for cognitive enhancement only apply in certain late-life disease states (Alzheimer's) which have unique conditions that don't apply, even in CFS. For everyone else, Memantine is almost guaranteed to reduce cognition.

It also harms sleep quality in most people after the adaptation phase. During start-up people may feel like they sleep better because they're so sedated by the ramp-up effects, but actual restorative sleep suffers. There is even a study which uses Memantine to promote wakefulness in rats, from what I remember.



Overall, I don't think Memantine is a promising candidate, especially given the cognitive impairment it brings. Anyone evaluating Memantine should be prepared to wait until 1-2 months later to really evaluate how the drug is working, as that's how long it takes to reach steady state if you increase the dose a few times.

 

[Sancar]

Definitely, everything patients take is best prescribed individually.

I take a supplement, Huperzine A, for POTS that doesn't contain the allergens or have the unpleasant intestinal side effects of pyridostigmine (Mestinon). I find curcumin, boswellia and CBD oil to be effective and far safer than taking an NSAID. B12 and iron are far more effective than drugs for B12 deficiency or anemia.

Hi Learner1 ~ I hope you’re doing well today. FYI I truly appreciate your posts! Thanks

May I ask how long youve ben taking Hupersine A, and what brand/ dosage you found helpful for POTS?

Also I wondered the same in regards to B12 and Iron. I can’t go a DAY without B12. Ive taken Iron in the past, however finding the “right dose” for oneself is tricky. Any information you have is very much appreciated!
Thanks a

 

[frozenborderline]

!Memantine has hekped me a lot but unfortunately causes constipation issues

 

[hmnr asg]

!Memantine has hekped me a lot but unfortunately causes constipation issues

does it help with brain fog?
are you planning on stopping it?