Pregabalin, Ativan and Abilify

[Martin aka paused||M.E.]

These are the drugs that help/ed me with ENERGY.And I tried around 100.

Abilify: Miracle (very very severe - moderate in 2 months, after 4 1/2 months no effect anymore. Never worked again)

Pregabalin: Moderate-Good effect, depending on the dose. Needs high doses to work. Tolerance develops

Ativan: Moderate-Good depending on the dose. Tolerance and addiction.

I can’t make any connection between Abilify and the two others. Does anyone has any idea regarding the mode of action here (on platelets or mitos or…)? I need a similar drug without these tolerance and dependency issues.

Thank you very much!

 

[halcyon]

Does anyone has any idea regarding the mode of action here

I don't have any input on the latter two as I don't understand how all they work.

Regarding Abilify/aripiprazole, I've seen a couple ideas. One being the dopamine agonism. Richard L. Bruno, who developed what he called the Brain Fatigue Generator Model of PVFS (Bruno et al., 1998), felt that post-polio syndrome and ME/PVFS were clinically very similar/the same, and both may respond to replacement of dopamine. He did perform a pilot study on post-polio patients using bromocriptine that showed some effect (Bruno et al., 1996). I don't know that you'll find any dopamine agonist drugs that don't suffer from tolerance issues however.

Another idea is that aripiprazole may work via immunomodulatory effects. In vitro, aripiprazole has an inhibitory effect on activated microglia (Kato et al., 2008).

A third, more wacky idea, is that perhaps by decreasing cortisol, aripiprazole could improve immune function, but I'm not sure there's much support for that idea.

 

[Alvin2]

My theory is that they are working in a similar way to Dexedrine. Basically as a stimulant.
Which might be the next drug for you to try if you get desperate (expect tolerance again) but i don't know if any of these drugs are just making things worse long term.

 

[heapsreal]

Pregabalin works like a calcium channel blocker. So its more of a calming effect on neurons and my thoughts are that it can help with brain fog/fatigue by calming neuroinflammation down, why its used for nerve pain and anticonvulsant.

My recent post on brain fog being mild pain i think also contributes to fatigue feeling and how pregabalin helps you. Im like you in that it helps moderately but need higher doses but this causes me more side effects.

Agree on the tolerance thing. What may work is to move to another drug thats used for nerve pain and as an anticonvulsant. What comes to mind and may help with cfs symptoms itself is toprimate/topamax and while using this you have a break from pregabalin. The question is the dose of topamax and for how long before pregabalin tolerance is reduced. Trial and error i guess for tolerance and drs should have conversion charts when crossing over from medications like pregabalin to toprimate.

Another medication comes to mind which may help if pregabalin and ativan help you is baclofen. Its a
gaba b agonist and is used mostly as a muscle relaxant. I find it improves sleep quality if taken at night and if i use it in low doses during the day it helps with fog and headaches. Baclofen i think was a med often prescribed by Dr Jay Goldstein who was a psychiatrist who helped many cfsers. It was also used in alcoholics to help them manage withdrawal symptoms etc. I think it has a wide range of uses and said to be less addictive and less tolerance issues then the typical gaba a agonists like ativan.

Good luck👍

 

[Martin aka paused||M.E.]

It’s all about energy not pain nor sleep quality. Baclofen did nothing sadly.

 

[YippeeKi YOW !!]

Hiya @Martin aka paused||M.E. ....

Thank you for, as ever, sharing what you've learned the hard with all of us, so we don't have to !!!

I thought you might find this article interesting ...

Man hallucinates and 'hears God' while on antibiotics. What happened?
https://www.livescience.com/antibiotics-give-man-mania?utm_source=notification

"Sienaert and colleagues found that clarithromycin, one of the antibiotics doctors prescribed to the man in the case report, is one of the most commonly implicated antibiotics in antibiomania cases, along with the quinolone antibiotics ciprofloxacin and ofloxacin.

While the exact mechanism of interaction between antibiotics and the central nervous system (which includes the brain) remains unknown, Sienaert and colleagues laid out several hypotheses in their review. For instance, a few classes of antibiotics — including macrolides, like clarithromycin, and beta-lactams, like amoxicillin — have been found to affect the brain's GABAergic system. The antibiotics act as an inhibitor of gamma-aminobutyric acid (GABA), a ubiquitous neurotransmitter that is responsible for tamping down excited neurons.

Additional mechanisms proposed in Sienaert's review include the ability of antibiotics to disrupt patients' gut microbiomes and cause dysfunction in mitochondria, which power cells."

As always, ....

 

[tommybrand]

I’m also very curious why Lorazepam (Ativan) works well, when other benzodiazepines such as Diazepam and Oxazepam have little-to-no effect on symptoms at all.

I’ve found that taking 2.5 mg Lorazepam keeps me PEM-free and energised for 2 days even with significantly increased activity levels. Though I only use it once or twice a month due to risk of tolerance and dependency.

 

[GlassCannonLife]

I’m also very curious why Lorazepam (Ativan) works well, when other benzodiazepines such as Diazepam and Oxazepam have little-to-no effect on symptoms at all.

I’ve found that taking 2.5 mg Lorazepam keeps me PEM-free and energised for 2 days even with significantly increased activity levels. Though I only use it once or twice a month due to risk of tolerance and dependency.

What happens if you take some after you already have bad PEM / are crashed?

Does it help the recovery, delay it, or just mask symptoms while it progresses at the same rate?

 

[borko2100]

It is interesting to ponder whether the benefits are due to the main actions of these drugs (i.e. modulating dopamine, gaba, etc.) or due to secondary actions, which we may not be aware of?

I’m also very curious why Lorazepam (Ativan) works well, when other benzodiazepines such as Diazepam and Oxazepam have little-to-no effect on symptoms at all.

This supports the second possibility above. After all, all benzo's tend to affect GABA, so you would expect to have benefits from all if that's what's helping. But, maybe ativan has some other secondary effects that help, which are totally unrelated to GABA?

 

[Treeman]

Pregabalin: Moderate-Good effect, depending on the dose. Needs high doses to work. Tolerance develops

What dose did you find most beneficial?

 

[tommybrand]

What happens if you take some after you already have bad PEM / are crashed?

Does it help the recovery, delay it, or just mask symptoms while it progresses at the same rate?

It’s helped a lot the few times I’ve taken it during PEM. I would say it significantly shortens the duration and feels like I’ve taken some kind of powerful superhero anti-inflammatory agent.

—

A few years ago I had viral encephalitis and was prescribed 2 mg Clonazepam to take on a daily basis due to severe insomnia and generalized anxiety (I was living in SE Asia at the time where they are generally very liberal with prescribing benzodiazepines).

Clonazepam also helped with energy and relieving PEM episodes, though the effect disappeared after about 3-4 weeks of continuous usage. It took me six months to taper off this drug, which is why I’m very cautious about taking Lorazepam more than twice a month.

Based on my experience, Lorazepam feels much more powerful than Clonazepam in terms of relieving ME-symptoms. Though I must caution anyone considering to use these drugs; please use them very sporadically as the positive effects disappear if you use them often, and the withdrawal symptoms are incredibly unpleasant as they really mess up your GABA receptors.

 

[Alvin2]

Pregabalin: Moderate-Good effect, depending on the dose. Needs high doses to work. Tolerance develops

Presumably you know about this already?
https://www.omf.ngo/study-of-thrombospondin-1/

 

[Alvin2]

Presumably you know about this already?
https://www.omf.ngo/study-of-thrombospondin-1/

And this:
https://www.omfcanada.ngo/wp-conten...ium_Stanford-University_Sept-8-11-2020-v6.pdf

 

[hmnr asg]

these three medications: ativan, abilify and Lyrica have been the only things that have helped me.
Low dose abilify almost took me to a remission but it stopped working after 2 months (and im between moderate and severe, housebound and getting to bedbound recently).
Ativan almost immediately stops a PEM if i dont take it often.
And Lyrica daily use helps me with PEM also.

I think one of the important things for CFS research is to create subgroups. I think since we dont know the underlying mechanism of CFS, we could at least create subgroups based on our responses to medication. For example, there is a clear subgroup who have had tremendous response to abilify.

Edit: I forgot to mention two other medications that help, but the way they work feel different. Opioids give temporary relief and also ritalin gives me a short boost with a big crash. So i put these two in a separate category.

ps @YippeeKi YOW !! What???

 

[YippeeKi YOW !!]

ps @YippeeKi YOW !! What???

Have no idea what you're referencing ....

 

[hmnr asg]

Have no idea what you're referencing ....

I am just curious, what is the connection between the article you posted and the topic of this thread?
Either my brain fog has reached new levels, or you are way off topic here.

 

[YippeeKi YOW !!]

I am just curious, what is the connection between the article you posted and the topic of this thread?
Either my brain fog has reached new levels, or you are way off topic here.

While the exact mechanism of interaction between antibiotics and the central nervous system (which includes the brain) remains unknown, Sienaert and colleagues laid out several hypotheses in their review. For instance, a few classes of antibiotics — including macrolides, like clarithromycin, and beta-lactams, like amoxicillin — have been found to affect the brain's GABAergic system. The antibiotics act as an inhibitor of gamma-aminobutyric acid (GABA), a ubiquitous neurotransmitter that is responsible for tamping down excited neurons.

The thread topic is the use of GABAergic medications that affect the brain, neurotrasmitters, and CNS in an effort to treat M.E. .....

Since inflammation of the brain and CNS are issues of interest in this crappy little gnawing limpet of an illness, as well as the effect of antibiotics-based treatment modalities along with the above mentioned psych drugs, I thought the article might of of interest to readers who were interested in connecting the dots.

Additional mechanisms proposed in Sienaert's review include the ability of antibiotics to disrupt patients' gut microbiomes and cause dysfunction in mitochondria, which power cells."

There are also quite a few of us who believe that the gut microbiome plays a more than minor role in this illness, and there's a fair amount of information on the effect of various psych meds on the Enteric Nervous system's health and balance.

I'm sorry you didnt see the point, but you really didnt need to call me out about posting info whose relevance seems unimportant or dismissible to you.

 

[GlassCannonLife]

The thread topic is the use of GABAergic medications that affect the brain, neurotrasmitters, and CNS in an effort to treat M.E. .....

Since inflammation of the brain and CNS are issues of interest in this crappy little gnawing limpet of an illness, as well as the effect of antibiotics-based treatment modalities along with the above mentioned psych drugs, I thought the article might of of interest to readers who were interested in connecting the dots.


There are also quite a few of us who believe that the gut microbiome plays a more than minor role in this illness, and there's a fair amount of information on the effect of various psych meds on the Enteric Nervous system's health and balance.

I'm sorry you didnt see the point, but you really didnt need to call me out about posting info whose relevance seems unimportant or dismissible to you.

I thought it was very interesting, I hadn't heard of the link between antibiotics and GABA before.

 

[hmnr asg]

@YippeeKi YOW !! my apologies to you, i was not trying to be mean. Just frustrated by how easily our threads get derailed and polluted by irrelevant and unhelpful and counterproductive posts.

I come from a computer science background and our forums (for back when i could still work) had very strict guidelines and "netiquette" that were mercilessly enforced to ensure threads ended up being useful in the end.

But of course your post was relevant (via the GABAergic connection) and I just wasn't able to connect the dots between your post and the original post by Martin. So i am the idiot here. My apologies.

 

[YippeeKi YOW !!]

But of course your post was relevant (via the GABAergic connection) and I just wasn't able to connect the dots between your post and the original post by Martin. So i am the idiot here. My apologies.

Totally understand ..... like you, I also get frustrated at derailing posts, partiucalrly in a thread that I'm really interested in, and whose content I feel is important.

Thank you for your graceful and thoughtful apology. It truly is much appreciated !!!