Pregabalin, Ativan and Abilify

[YippeeKi YOW !!]

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

Thank you @GlassCannonLife .... I found it really interesting too, particularly for the reasons I stated in my response to @hmnr asg ... this illness is deeply mysterious, and any hope for unraveling those mysteries may lie in examining areas that at first seem totally off the map ....

 

[hmnr asg]

Thank you @GlassCannonLife .... I found it really interesting too, particularly for the reasons I stated in my response to @hmnr asg ... this illness is deeply mysterious, and any hope for unraveling those mysteries may lie in examining areas that at first seem totally off the map ....

But how long do we have to wait!! I am running out of time and life! its been 13 years and when I got sick I was 29 (still a young buck) and now im 42 (and feel like 85). The best years are gone and counting and im just getting worse and worse. I used to go to the gym three hours a day, have tons of friends and a thriving career. Now I have nothing. I spend each precious day in bed wasting it away.

I got severe since the last five years and now becoming bed bound. I am so frustrated and angry. I have been on this forum for so many years and seen this theory and that theory, and the lady who got cured by kale and the dude who got cured by magic crystals and ... But nothing useful ever happens! and the years just keep going by!
And this abilify thing almost cured me and I thought the nightmare is over! I couldnt believe it, and then it stopped working completely. I just dont know what to do anymore.

And this OMF is just puttering around. I am tired of their theoretical and useless papers. Why dont they just look into what abilify does and that should be their starting point!

Sorry for the nervous breakdown post.

 

[GlassCannonLife]

But how long do we have to wait!! I am running out of time and life! its been 13 years and when I got sick I was 29 (still a young buck) and now im 42 (and feel like 85). The best years are gone and counting and im just getting worse and worse. I used to go to the gym three hours a day, have tons of friends and a thriving career. Now I have nothing. I spend each precious day in bed wasting it away.

I got severe since the last five years and now becoming bed bound. I am so frustrated and angry. I have been on this forum for so many years and seen this theory and that theory, and the lady who got cured by kale and the dude who got cured by magic crystals and ... But nothing useful ever happens! and the years just keep going by!
And this abilify thing almost cured me and I thought the nightmare is over! I couldnt believe it, and then it stopped working completely. I just dont know what to do anymore.

And this OMF is just puttering around. I am tired of their theoretical and useless papers. Why dont they just look into what abilify does and that should be their starting point!

Sorry for the nervous breakdown post.

I'm sorry to hear that.. I started getting sick at 28 and have been severe since 29 too.. Currently 32 and just crashed horribly (hopefully won't be bedbound but don't know yet).

It really is a terrible situation for all of us and I don't understand why it always feels like nobody really cares!

My son is about to turn 3 and my wife is newly pregnant.. We thought we'd be ok but then covid came and crashed me with hardly any normal symptoms and now I don't know what is going to happen.

Sorry to join your rant but yeah it's so depressing and frustrating. Feels like a prison sentence only there's no bars and you have to choose to stay doing nothing because if you don't it only gets worse or it kills you.

 

[YippeeKi YOW !!]

But how long do we have to wait!!

Given the progress to date, I'd say that the medico-scientific research community will find a cure for cancer and a treatment that'll extend the 'normal' lifespan to 130 years before they crack the code on ME/CFS ....

its been 13 years and when I got sick I was 29 (still a young buck) and now im 42 (and feel like 85). The best years are gone

It's been almost exactly the same time for me. I spent approximately 3 years in a slow, steady downward spiral and the next 5 or 6 bedbound and near-vegetative before I realized that there was absolutely ZERO help coming to me from the medical community, none of which seemed to either understand this illness, or even accept it as a real 'thing'.

That's when I started struggling to find very small ways to achieve very small improvements, It took a while because my cognitive abilities were so severely limited and hampered, but little by little, I managed to drag myself from severe to mod'ly severe, to more or less moderate now, altho I'm still occasionally bedbound, ad almost completely housebound.

I TOTALLY feel, and share, your frustration and fear.

But trust me, the best years are NOT gone. You've lost out on a big chunk of young adulthood, but there's a lot more 'good time' left. I promise. I'm older than you, so I speak from some experience ....

Sorry for the nervous breakdown post.

Totally justified. I have them, too. I think that they're a valuable release valve .

 

[YippeeKi YOW !!]

It really is a terrible situation for all of us and I don't understand why it always feels like nobody really cares!

Probably because so very few, outside of our own communities both RL and online, really do. It's shameful, but the so much of the world is. Especially right now.

(hopefully won't be bedbound but don't know yet).

Bedbound isnt a guaranteed state with this shitty little crash-cart of an illness. Keep researching, keep carefully trialing, keep doing the things that help and avoiding those that don't.

God, that sounds so simplistic and dismissive ..... it absolutely isn't intended to be. It's just that those are the only things that have helped me sort of stabilize, and except for really bad days, avoid falling back into the deeper pit ...

EDIT .... typos, the bane of my existence. Well, one of the lesser ones ...

 

[YippeeKi YOW !!]

And this abilify thing almost cured me and I thought the nightmare is over! I couldnt believe it, and then it stopped working completely. I just dont know what to do anymore.

A lot of members here have had the same experience. It works, you feel like you've really turned a corner, and than... BLAMMMM! Down for the count again.

It's more demoralizing and soul-destroying than just staying at the same level of bad.

Dont lose hope. If Abilify helped you, then there's something else out there that can be of value, too.

We just have to keep on keepin' on. Depressing and annoying .

 

[GlassCannonLife]

Thanks @YippeeKi YOW !! I'll keep trying my best. Just so tired of being ill and having to be so proactive constantly.. Your words are helpful though

 

[YippeeKi YOW !!]

Just so tired of being ill and having to be so proactive constantly.. Your words are helpful though

It's exhausting, even without the additional burden of ME/CFS, which makes even the best day so much harder to navigate.

It's kind of you to say so, and I appreciate it .... I never know ....

 

[GlassCannonLife]

It's exhausting, even without the additional burden of ME/CFS, which makes even the best day so much harder to navigate.

It's kind of you to say so, and I appreciate it .... I never know ....

Yeah very much so. I also found your story inspiring, can't remember where I saw it in more detail (somewhere on here). I hope I can slowly improve over time as well. Thinking I'll just do ART for a month or two as intensely as possible and see if that can move the needle.

 

[YippeeKi YOW !!]

Thinking I'll just do ART for a month or two as intensely as possible and see if that can move the needle.

Anything that you know from experience lifts you up, even a little, is the best medicine .... at least in the absence of any other. I'll be pulling for you, as useless as that is .....

 

[tommybrand]

And this abilify thing almost cured me and I thought the nightmare is over! I couldnt believe it, and then it stopped working completely. I just dont know what to do anymore..

The fact we have found drugs like Abilify and Ativan that provide such a rapid (though temporary) remission, makes me much more confident that this illness is reversible and we will find a cure sooner rather than later.

I agree that more research should be put into why these drugs work so well. This must surely be a hot lead to work from, and investigate what these drugs are doing to ME/CFS patients vs controls. Are any scientists/labs even looking into these mechanisms?

 

[hmnr asg]

The fact we have found drugs like Abilify and Ativan that provide such a rapid (though temporary) remission, makes me much more confident that this illness is reversible and we will find a cure sooner rather than later.

I agree that more research should be put into why these drugs work so well. This must surely be a hot lead to work from, and investigate what these drugs are doing to ME/CFS patients vs controls. Are any scientists/labs even looking into these mechanisms?

Thats almost more frustrating, you know your life is just right there, almost within reach, you just cant get to it!
I dont think anyone is working on it, maybe @Martin aka paused||M.E. knows of anything?
honestly i am very disappointed in the current state of research and the researchers in the CFS field (except Ron Davis, but he is very old now and is not working with much funding).

It seems most of the researchers are either:
- working top-down: trying to create an all encompassing model of the disease, like the metabolic trap theory. This to me is a hopeless cause (takes much longer to develop and verify, and we have many sub-groups, there is no over-arching model)
- looking for biomarkers, and specially in small samples. Given the heterogeneity of this disease, this is a nightmare from a statistical perspective.

What they should be doing is to look at the biomarkers of the patients who do improve with abilify/ativan intervention before and after the medication and work their way back to a model.

 

[YippeeKi YOW !!]

This must surely be a hot lead to work from, and investigate what these drugs are doing to ME/CFS patients vs controls. A

The difficulty is that none of them work on ALL ME/CFS patients, and in rare instances, some of them make things worse. This scares away any in-depth research, because after all, the point of research, much as we'd like to think otherwise, is to develop something that makes someone a LOOOOTTT of money, whit the least possible initial investment.

ME doesnt hold out much hope of that ....

- looking for biomarkers, and specially in small samples. Given the heterogeneity of this disease, this is a nightmare from a statistical perspective.

Yeah, what he said .....

 

[borko2100]

The fact we have found drugs like Abilify and Ativan that provide such a rapid (though temporary) remission, makes me much more confident that this illness is reversible and we will find a cure sooner rather than later.

It is very strange how despite these two drugs having completely different mechanisms of action (dopamine vs gaba) they both seem to help. Like I mentioned earlier I think there must be some secondary drug effects at play here. Furthermore I doubt that CFS is simply a disorder of the dopamine or GABA system, it seems to me it is instead a more far reaching systemic disorder that affects far more than just those systems.

 

[Martin aka paused||M.E.]

It is very strange how despite these two drugs having completely different mechanisms of action (dopamine vs gaba) they both seem to help. Like I mentioned earlier I think there must be some secondary drug effects at play here. Furthermore I doubt that CFS is simply a disorder of the dopamine or GABA system, it seems to me it is instead a more far reaching systemic disorder that affects far more than just those systems.

Many ppl forget that these are not only function as neurotransmitters… dopamine has also a crucial role in metabolism

 

[borko2100]

Many ppl forget that these are not only function as neurotransmitters… dopamine has also a crucial role in metabolism

That's another explanation yes. Maybe dopamine, besides it's usual effects on the brain, is also affecting energy production somehow. Personally I have noticed that bursts of dopamine (eg. from certain foods or positive events) does give me temporary boost in energy. However, maybe that's just masking of symptoms rather than something more significant.

 

[hmnr asg]

However, maybe that's just masking of symptoms rather than something more significant.

Abilify was definitely something more significant. Ativan definitely removed my PEM feeling of brain-on-fire, so these do more thank just mask.

But i dont know if i would attribute their benefits to just dopamine: there are other medications that are just for raising dopamine levels and i dont think anyone in the community has had much success with them (like levodopa and Mirapex ).

 

[Seadragon]

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.

Different benzos have stronger affinities for different GABA sub units. See here:

https://wiki.tripsit.me/wiki/GABA_Receptors_and_Subunits_Info

Maybe this is why Lorazepam works for so many where other benzos are less effective??

I am one who took benzos many years ago (Diazepam then Clonazepam) for a few years as many on these forums used them back then as per Cheney (?) but I ended up having to withdraw due to the development of tolerance withdrawal (I developed withdrawal symptoms on stable doses even before I started to taper). The whole withdrawal experience was a complete nightmare that took two to three years to wean off super slowly and then recover and it is not something I ever, ever want to go through again.

In hindsight, I would have only taken a benzo once or twice a month at most as, whilst some seem to do OK with very small daily doses for years, even those people report eventual loss of effectiveness with chronic use over time and tolerance and involuntary addiction develop fairly quickly. Withdrawal can be really, really difficult for some.

So be careful everyone and if you have to use a benzo, make sure to do so as rarely as is possible eg for rare family visit or important doctor appointment, and be aware of the dangers of regular use.

 

[Rvanson]

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

Good luck with the Ativan. It's a benzodiazepine and most doctors won't prescribe them anymore.

 

[Rvanson]

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?

Xanax works best for me. 7-8 hours of sleep at bedtime, and I wake up with NO grogginess at all. I didn't like Lorazapam. Seemed to mess around with my cognition. No such thing with Xanax at all. Yes, it's addictive, but there is no proof it damages the brain, as they are trying
to claim. Statins, OTOH, are very dangerous but handed out like candy with NO proof that they are helpful and lots of proof they are not safe at all.