Benzos as necessity

judyinthesky

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Hello
Please no lectures on the dangers of benzo addiction etc

My situation is pretty extreme, as I need a benzo to eat my one meal a day.
I have an extreme form of reaction to eating and otherwise the effects on my nervous system and brain inflammation are too severe.

Also have a spinal leak and extreme forms of hour long dissociation as PEM.

I'm declining rapidly, I would say every two months.
Total parenteral nutrition is not an option on the long term as per my doctors.

Exhausted all mast cell treatment and pre digested liquid diet options.

My question is, do we know people with ME who are on benzos long term around the clock because of extreme nervous system effects, and how often did they have to increase?

I'm trying to take as little as possible and combine gaba a and b receptor medication.
But my neurological effects are stronger than the effects of my medication. For instance, I can take 0.5 Xanax but would still have hour to day long brain inflammation with out of body dissociation feelings.

I know of some people with extreme EDS who couldn't turn in bed with extreme neuro effects who are also on a higher dose of them.

Some hold the opinion that we don't have to increase benzos as much because we're taking them for mast cell issues etc.

But I feel since last year I definitely had to increase, but I think it's because my illness is so progressive.

Unfortunately there's no other medication I can take that will let me eat.

It's a bit like that women that had an allergy against ANY clothing. It's ANYTHING I put through my gastro system, liquid or not.

Experiences of such extreme situations welcome.
 
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I'm trying to take as little as possible and combine gaba a and b receptor medication.
Which medications are those?
But I feel since last year I definitely had to increase, but I think it's because my illness is so progressive.
It may not be just your illness that's progressive.

I'm not going to beat you up over this, because I know what desperation and tolerance withdrawal can do singly, but combined, they're intolerable.

You've been on benzos for a long time and it doesn't seem that they've made you better, in fact, just the opposite. Please be careful ....:wide-eyed::wide-eyed: :hug:
 

judyinthesky

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Which medications are those?

It may not be just your illness that's progressive.

I'm not going to beat you up over this, because I know what desperation and tolerance withdrawal can do singly, but combined, they're intolerable.

You've been on benzos for a long time and it doesn't seem that they've made you better, in fact, just the opposite. Please be careful ....:wide-eyed::wide-eyed: :hug:
I didn't want a discussion on this.
I was constantly declining with my ME before I even touched them and as said I try to take as little as possible and go on different receptors.

Do you have any other ideas to be able to eat?

I take Clonazepam during the day 0.5, Xanax 0.25 to sleep, valerian tea and passion flower. Latter works on a different receptor.

I've tried to avoid this as much as possible so please no shaming. Had to go on them due to the leak and eating issues a year ago. Wouldn't be alive otherwise and haven't needed before leak only in crash.

In crash sometimes go up a little.

I would be dead otherwise.
 

judyinthesky

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What reason did your Drs give for that? Are these the Drs that are prescribing your benzo?
I have a GP and a good ME expert and they agree on this. I have no gastroparesis my stomach is working fine. It's the insane brain signals and brain inflammation it causes.

I'm strangulated by the effects of my nervous system otherwise but technically it's working.
So TPN nutrition would only be for a week otherwise very risky due to sepsis and I'm also too severe to go into hospital without major impacts.
It's not a long term solution.

My nervous system is bonkers due to this extreme mast cell reaction to food.

I'm interested in contact to people and experiences of those who are in a similar dilemma.
 

judyinthesky

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Which medications are those?

It may not be just your illness that's progressive.

I'm not going to beat you up over this, because I know what desperation and tolerance withdrawal can do singly, but combined, they're intolerable.

You've been on benzos for a long time and it doesn't seem that they've made you better, in fact, just the opposite. Please be careful ....:wide-eyed::wide-eyed: :hug:
To be crystal clear I don't think it's the benzos that make me decline, but the neuro terror and crashes that I go in by just eating liquid food etc - which has been the case long before I touched them.

Other reasons why I am on them is because I have extreme burning in my spinal cord and tailbone and bladder and it is the only thing that helps and I can't take other gaba medication such as lyrica.

Nevertheless I know it is a dilemma hence the thread.
 
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heapsreal

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Hello
Please no lectures on the dangers of benzo addiction etc

My situation is pretty extreme, as I need a benzo to eat my one meal a day.
I have an extreme form of reaction to eating and otherwise the effects on my nervous system and brain inflammation are too severe.

Also have a spinal leak and extreme forms of hour long dissociation as PEM.

I'm declining rapidly, I would say every two months.
Total parenteral nutrition is not an option on the long term as per my doctors.

Exhausted all mast cell treatment and pre digested liquid diet options.

My question is, do we know people with ME who are on benzos long term around the clock because of extreme nervous system effects, and how often did they have to increase?

I'm trying to take as little as possible and combine gaba a and b receptor medication.
But my neurological effects are stronger than the effects of my medication. For instance, I can take 0.5 Xanax but would still have hour to day long brain inflammation with out of body dissociation feelings.

I know of some people with extreme EDS who couldn't turn in bed with extreme neuro effects who are also on a higher dose of them.

Some hold the opinion that we don't have to increase benzos as much because we're taking them for mast cell issues etc.

But I feel since last year I definitely had to increase, but I think it's because my illness is so progressive.

Unfortunately there's no other medication I can take that will let me eat.

It's a bit like that women that had an allergy against ANY clothing. It's ANYTHING I put through my gastro system, liquid or not.

Experiences of such extreme situations welcome.

A few things that might be helpful to look into.

Memantine is a drug that some have found helpful at reversing benzo tolerance or atleast reducing tolerance issues.

It may help reduce tolerance to alternate between different benzos, but would have to work out a time frame with your dr as some alternate daily and others weekly or monthly.

Something that may help you need less benzo's are antiseizure drugs plus they can also be good for anxiety on their own. Eg lyrica, gabapentine, topamax and more.

Doxepine has sedation effects that could help anxiety related issues as well as supposedly strong effects on mast cell activation. Like the antiseizure meds, doxepine may help you to require less benzo's.

Tizanadine a muscle relaxer could be an option.

Also certain antihistamines can help with anxiety as well as mast cell issues like periactin, atarax etc. Periactin has also been shown to increase deeper stages of sleep. If you get alot of nausea from gut issues than antihistamines can help lesson nausea.

Beta blockers may also help.

All the above, talk it over with your dr of course.

My experience with benzo's and cfsme is that they have helped me alot for insomnia issues and my general ability to function. I don't use them for anxiety etc so my personal experience is limited there.

I hope this helps🤞
 

lenora

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Hello @judyinthesky. I'm sorry that you're still having so many difficulties. Are you taking extended release xanax (with a prescription for smaller doses, as required?)? I've been on xanax for probably 10 years now for severe anxiety.

Since I'm 75 yrs. old, this was controlled by natural means and a strong willpower in the beginning. As we become more ill (if we do) or other conditions increase, then it's a kindness to people to put them on long lasting drugs. Of course addiction is a problem, but you know that, your doctor knows....but then so is starving to death.
I'm not going to lecture you, and understand that you can't be on lyrica. If you don't have pain, but the brain signals are causing distress, then don't feel bad about taking medical advice. Just don't quit the drug by not taking it....that's never the answer, for any drug. There are times when these things are necessary, pure and simple.

If you trust your Dr., go with his recommendation and live your life as well as you can. After all, so many parts of the body can be affected, brain signals being one of the obvious ones. I take smaller doses of xanax when and if needed. Again, bear in mind my age. I've had confirmation from a psychiatrist, psychologist and my neurologist gives me the prescriptions. Wishing you well. I also take vitamins....but you may not be able to. No caffeine helps. Yours, Lenora.
 

judyinthesky

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A few things that might be helpful to look into.

Memantine is a drug that some have found helpful at reversing benzo tolerance or atleast reducing tolerance issues.

It may help reduce tolerance to alternate between different benzos, but would have to work out a time frame with your dr as some alternate daily and others weekly or monthly.

Something that may help you need less benzo's are antiseizure drugs plus they can also be good for anxiety on their own. Eg lyrica, gabapentine, topamax and more.

Doxepine has sedation effects that could help anxiety related issues as well as supposedly strong effects on mast cell activation. Like the antiseizure meds, doxepine may help you to require less benzo's.

Tizanadine a muscle relaxer could be an option.

Also certain antihistamines can help with anxiety as well as mast cell issues like periactin, atarax etc. Periactin has also been shown to increase deeper stages of sleep. If you get alot of nausea from gut issues than antihistamines can help lesson nausea.

Beta blockers may also help.

All the above, talk it over with your dr of course.

My experience with benzo's and cfsme is that they have helped me alot for insomnia issues and my general ability to function. I don't use them for anxiety etc so my personal experience is limited there.

I hope this helps🤞
Thank you
Technically I don't have anxiety, I have nervous system high to extremes and dissociation

Thank you so much for the list, a lot I've tried already, and can't take, but memantine I've heard now a couple of times.. as off Label idea for ME as well. Any experience welcome.
 

judyinthesky

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Hello @judyinthesky. I'm sorry that you're still having so many difficulties. Are you taking extended release xanax (with a prescription for smaller doses, as required?)? I've been on xanax for probably 10 years now for severe anxiety.

Since I'm 75 yrs. old, this was controlled by natural means and a strong willpower in the beginning. As we become more ill (if we do) or other conditions increase, then it's a kindness to people to put them on long lasting drugs. Of course addiction is a problem, but you know that, your doctor knows....but then so is starving to death.
I'm not going to lecture you, and understand that you can't be on lyrica. If you don't have pain, but the brain signals are causing distress, then don't feel bad about taking medical advice. Just don't quit the drug by not taking it....that's never the answer, for any drug. There are times when these things are necessary, pure and simple.

If you trust your Dr., go with his recommendation and live your life as well as you can. After all, so many parts of the body can be affected, brain signals being one of the obvious ones. I take smaller doses of xanax when and if needed. Again, bear in mind my age. I've had confirmation from a psychiatrist, psychologist and my neurologist gives me the prescriptions. Wishing you well. I also take vitamins....but you may not be able to. No caffeine helps. Yours, Lenora.
I mainly take Clonazepam because it's softer and longer lasting. Xanax reserve for when I need to knock me out
Thank you
No definitely not quitting as I'm barely holding on
 

katabasis

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You mentioned taking GABA-B receptor medication. I wonder if you've heard of fasoracetam? It's a nootropic drug which has also been shown to upregulate GABA-B receptors. So perhaps if GABA-B agonists give you relief, you could either combine or alternate with fasoracetam so your receptors aren't getting desensitized.

Fasoracetam is mainly a mGluR agonist, so I'm not sure whether you'd be able to tolerate it. Have you ever tried any other glutamatergic/racetam-like drugs?
 

judyinthesky

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You mentioned taking GABA-B receptor medication. I wonder if you've heard of fasoracetam? It's a nootropic drug which has also been shown to upregulate GABA-B receptors. So perhaps if GABA-B agonists give you relief, you could either combine or alternate with fasoracetam so your receptors aren't getting desensitized.

Fasoracetam is mainly a mGluR agonist, so I'm not sure whether you'd be able to tolerate it. Have you ever tried any other glutamatergic/racetam-like drugs?
Thank you very much I will look into that.
What would be examples of such drugs? I suspect glutamate problems like many with ME. BDNF is also high. Can not tolerate lyrics pregabaline and the like. Racetam haven't.
 

judyinthesky

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You mentioned taking GABA-B receptor medication. I wonder if you've heard of fasoracetam? It's a nootropic drug which has also been shown to upregulate GABA-B receptors. So perhaps if GABA-B agonists give you relief, you could either combine or alternate with fasoracetam so your receptors aren't getting desensitized.

Fasoracetam is mainly a mGluR agonist, so I'm not sure whether you'd be able to tolerate it. Have you ever tried any other glutamatergic/racetam-like drugs?
If its to help people with adhd and stimulating, that's usually not so good for me. But the upregulation could be good. Can you give me more information as I'm very very severe
 

katabasis

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Racetams are a class of drugs used primarily as nootropics - i.e. drugs that enhance cognition. They have a range of effects, often affecting glutamate (particularly AMPA receptors) or acetylcholine. They are typically not stimulating to the sympathetic nervous system, in the same sense as psychostimulants such as amphetamine and the like, though they probably do cause a general increase in brain activity.

There is a huge variety of racetams though, and some, like aniracetam, are even known to be somewhat sedating (I think the mechanism of action on that one is also GABA related). I have moderate-severe CFS, and I've tried a couple different racetams myself to try to reduce brain fog. For the most part they haven't helped, but I also haven't noticed too many side effects from them either. No increase in PEM or anything. Sometimes they can cause a headache or nausea. I totally get your concern that they will stimulate you though.

Fasoracetam is actually kind of unique among racetam because it affects mGluRs (metabotropic glutamate receptors) and not the more typical ionotropic ones. In layman's terms, most glutamate receptors control ion channels, which are involved in the neurons 'firing'. Activating these receptors thus increases neuronal excitability. But metabotropic glutamate receptors are more like serotonin or acetylcholine receptors, which cause other effects inside the neurons and either excite or inhibit the cells only indirectly. mGluRs have varying effects on neurons - some excitatory, some inhibitory.
 

judyinthesky

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Racetams are a class of drugs used primarily as nootropics - i.e. drugs that enhance cognition. They have a range of effects, often affecting glutamate (particularly AMPA receptors) or acetylcholine. They are typically not stimulating to the sympathetic nervous system, in the same sense as psychostimulants such as amphetamine and the like, though they probably do cause a general increase in brain activity.

There is a huge variety of racetams though, and some, like aniracetam, are even known to be somewhat sedating (I think the mechanism of action on that one is also GABA related). I have moderate-severe CFS, and I've tried a couple different racetams myself to try to reduce brain fog. For the most part they haven't helped, but I also haven't noticed too many side effects from them either. No increase in PEM or anything. Sometimes they can cause a headache or nausea. I totally get your concern that they will stimulate you though.

Fasoracetam is actually kind of unique among racetam because it affects mGluRs (metabotropic glutamate receptors) and not the more typical ionotropic ones. In layman's terms, most glutamate receptors control ion channels, which are involved in the neurons 'firing'. Activating these receptors thus increases neuronal excitability. But metabotropic glutamate receptors are more like serotonin or acetylcholine receptors, which cause other effects inside the neurons and either excite or inhibit the cells only indirectly. mGluRs have varying effects on neurons - some excitatory, some inhibitory.
Thank you so much
My issue is since the spinal leak my brain is very active. I do have brain fog but not much, and extreme head pain.

I would need someone to prescribe me those I reckon :)

I definitely need inhibitory
Do you have good experience with any

Gosh I was a researcher but my brain can't handle such simple information a year later
 

lenora

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Hello @judyinthesky ....... I'm sure everything above has exhausted you. Just rest and take it in slowly. I do know how difficult it can be. All good wishes. Yours, Lenora.
 
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@judyinthesky
If you suspect you have glutamate or GABA issues or sensitivity, or AMPA or NMDA issues, I'd be really cautious with any of the racetams, which generally are cyclic derivatives of GABA neurotransmitters, alto they don't act on GABA directly. They stimulate brain activity with an approximate similarity to glutamate, which is the 'learning' and 'action' neurotransmitter. It's also the neurotransmitter that, when not adequately balanced by GABA, can continue to excite neurons literally to death.

Nootropics are fairly uncharted territory by and large, and most, if not all, clinical studies have only been done on lab rats. Few researchers are clear about their modes of action, and it's really a crapshoot in terms of winnowing thru the many forms currently available.

They all have side effects, depending on your system, mode of ingestion, and dose. Sometimes none, sometimes fairly unpleasant ones like irritability, insomnia, anxiety, agitation, headaches and tremors, among others.

Given what you're going thru and dealing with, adding something as untested and uncertain as to everything from the actual content of what you're taking (racetams are totally unregulated) to what it's potential interactions with your system and genetics as a racetam seems to me to be spinning the cylinder pretty hard. There has to be a safer way ...


As a PS, if you do decide to try a racetam, it's been recommended that you increase your intake of some form of choline, since they all greatly increase the utiliztion of acetylcholine as part of their mode of action ....
 

katabasis

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@judyinthesky

Racetams aren't prescription drugs - you can buy these online pretty easily.

As for drugs that inhibit neuron firing, it seems like you're already familiar with the major ones - benzos and other GABAergics, gabapentinoids, etc. I think someone else mentioned memantine, which I think is great. I've been taking it for quite a while and it definitely reduces my pain and hyperacusis. It's an NMDA glutamate antagonist, but one which doesn't totally block the function of this receptor (this is good because glutamate is important for other things, like getting cystine into astrocytes and producing glutathione). It's also a D2 agonist which has been shown to be helpful for fibromylagia and I suspect helps the akathisia-like problems that occur in ME/CFS.

I'm also a big fan of skullcap, which is an herbal sedative. It contains a compound called baicalein, which is a positive allosteric modulator for GABA-A receptors (like benzos), but only ones that contain alpha-2 and alpha-3 subunits - so it's less sedating than most benzos. Skullcap also contains rosmarinic acid which inhibits the breakdown of GABA. And in addition to all that, a lot of the compounds in skullcap have anti-inflammatory and antiviral properties.

Kava is another really interesting herbal sedative. Also GABA-ergic, very much like benzos or alcohol in that regard, with some additional effects on cannabinoid receptors, adrenergic receptors, blocking sodium/calcium channels. Supposedly kava causes paradoxical upregulation of GABA receptors, with users never getting any tolerance to the drug. But with such a wide range of effects I'd be careful taking kava in your case.
 

katabasis

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@YippeeKi YOW !!

While many nootropics truly are 'uncharted territory', racetams are among the more well-studied ones. For the 'first generation' racetams like piracetam, pramiracetam, and aniracetam, there are a wealth of human studies. Some of these are even prescription drugs in other countries.

Fasoracetam is definitely newer, with less research, but there are already studies in humans - there was a clinical trial for vascular dementia (though it failed to meet its endpoints) and now one for ADHD. This doesn't provide the same guarantee of safety as drugs which have been through the whole FDA approval process or have decades of clinical use, but at least we have some data.

Everyone has their own risk tolerance, and all drugs have their own risks - both known risks and unknown risks. Personally, I'm comfortable trying 'outside the box' pharmacotherapy - drugs with off-label uses, or novel drugs with limited research. The way I see it, 'nothing ventured, nothing gained'. However, if a person only feels comfortable with the most studied and long-used drugs, that is also a completely reasonable stance towards risk.

I agree that people with CFS should be cautious taking racetams in general due to their effects on glutamate. For most healthy people they are generally considered to be neuroprotective but... well, we're not healthy people. It's unclear what the role of excitotoxicity is in CFS, and whether racetams would contribute to it due to their effects on ion channels.

However, I think fasoracetam is a big exception because it doesn't directly affect ion channels at all. Metabotropic glutamate receptors are almost more like autoreceptors - they're located presynaptically and modulate release of some neurotransmitters. I've seen research that suggests that they are part of a negative feedback loop to attenuate excessive glutamate, which is a very alluring target for CFS, I would think. However the exact function of mGluRs depends on their subtype - most reduce NMDA glutamate receptor activity, but a few actually increase it. Fasoracetam is apparently not selective for any particular subtype of mGluR. On balance it seems like it would probably not cause excitotoxicity (the fact that it upregulates GABA-B receptors helps with this, I imagine).
 
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Racetams aren't prescription drugs - you can buy these online pretty easily.
And therein lies one of their problems. I think it was ScienceDaily that reported the number of unlisted additional drug compounds in several readily available racetams, and these were not benign additions, tho they did serve to potentiate the effects.

You really can't be dead certain of what you're getting, even from a sort of reputable manufacturer, altho admittedly the risk is lower, the higher you go on the respect and $$$ spectrum.

And you also cant predict what interesting little SNP, contributed by a g-g-great-grand-whatever to your genetic code might not be a dangerous, or at least bothersome, trip-switch
I'm also a big fan of skullcap, which is an herbal sedative.
The commonly held belief that herbs are safe and affectionate little elves, here to gently nudge us back into balance, or into sleep, or into a sort of Zen calm is a wildly inaccurate underestimation of their capabilities, their power, and their pitfalls.

Skullcap, which I was taking during the earlier stages of ME when I was desperate for sleep, catapulted me into a real hell of cascading glutamate responses. It metabolizes thru the same isomeric liver pathways that benzos and Z-drugs do, and its action on the down-regulation of GABAa receptors became painfully apparent. And long lasting.

Ditto chamomile, hops, passion flower, and valerian, which was the standout star of this particular little cavalcade of catastrophes .... it had a totally paradoxical effect on my system, making me extremely jumpy, twitchy, and somewhat myoclonic.

Kava is another really interesting herbal sedative.
And again, know your seller. If the wrong part of the plant is used, or it's not processed correctly, your liver will not be thanking you. In fact, it wont be doing much of anything anymore.

Kava is a more or less ceremonial drink, shared at important gatherings or celebratory get-togethers, and while buying it in capsule form may have a similar effect to the liquid concoction, it's generally believed that it doesn't I cant say, didn't try it. because ..... know your source.
Everyone has their own risk tolerance, and all drugs have their own risks
Every flucking thing has its own set of risks, and rewards, of various dimensions, which is why I'm a huge proponent of thoughtful research, careful trialing, and general caution, particularly with heavily pitched and highly popular synthetic concoctions, like racetams.
Personally, I'm comfortable trying 'outside the box' pharmacotherapy
You're one of the brave and valiant warriors on this site. There are a few others, and you all have my deep and abiding respect and gratitude.

Your efforts may well push us closer, if not to a total Holy Grail, quite possibly to a genuine assist for many of us, tho as you know, probably not for ALL. Because this twisty little murderous sucking mud hole of an illness expresses a little differently in each and every one of us, and depending on our particular subset, will respond differently to the same thing that wored brilliantly for someone else.

Quel fun.
The way I see it, 'nothing ventured, nothing gained'.
Also, 'Nothing ventured, nothing lost ..." and a lot of us, myself included, can't afford to lose any of the hard-won gains we've slowly, methodically, managed, or worse, can't afford to fall too far below where we are right now ....
However, if a person only feels comfortable with the most studied and long-used drugs,
I dont think too many of us are comfortable with what Western allopathic wisdom has doled out to us, whether in studies bought and paid for by special interests, or experimental drug protocols, also supported by deeply interested financial sources. And the deep interest isnt necessarily in our well being or to our benefit.
It's unclear what the role of excitotoxicity is in CFS,
From what Ive read in these threads over the last 3 years, it seems to be a strongly recurring theme. I formd a weak and poorly-formed hypothesis a while back that glutamate intolerance or imbalance or sensitivity plays a definite role in aspects of what ails us. And GABA/glutamate/glutamic acid imbalances ....
However, I think fasoracetam is a big exception because it doesn't directly affect ion channels at all. Metabotropic glutamate receptors are almost more like autoreceptors - they're located presynaptically and modulate release of some neurotransmitters.
While they're usually found on pre-synaptic elements as opposed to postsynaptic elements, I was only aware of theur ability to modulate, in addition of glutamate transmissions, dopamine and cannabinoids.

Do they also modulate some forms of GABA? This would be news to me but then, so many science-y things are ...


A couple of years ago, when I was browsing around about racetams and newer forms of piracetam, the only info I could find on Fasoracetam was that, while it had been claimed to enhance cog function and improve mood, there was very little solid info on it, the science backing it was at a very early stage with limited data available about its potential effects in human users (not counting the anecdotal forms from the more adventurous), and that it was largely unproven.
Fasoracetam is apparently not selective for any particular subtype of mGluR. On balance it seems like it would probably not cause excitotoxicity
On balance, bumble bees probably shouldn't be able to lift off, let alone fly fairly long distances. And for anyone who's dealt with extended periods of wrenching, chest-crushing, bone-shaking excitotoxicity, that ".... probably shouldn't..." doesnt seem like an alluring proposition.



A TOTALLY DISMISSABLE THOUGHT, BUT HERE IT IS ANYWAY .....

Given your willingness to undertake adventurous, courageous, informed experimentation, have you considered opening a thread on your own experiences with the kind of substances and the rest of us might be more cautious about trying?

Or even better, your own blog on things that have worked slightly, things that have worked well, things that haven't worked at all,, and things that you wish you'd never heard of?