Abilify- Stanford Clinic Patients

[leokitten]

But i spend a lot of time on the CFS subreddit where the average age is way lower than here and a lot of posts are about how either the person is struggling with ADHD along with CFS or how CFS has destroyed their ability to maintain focus.

I know it’s hard to verify, but reports like this I always take with a big grain of salt. I think a lot of Reddit users think they have ME but weren’t ever diagnosed properly, so who knows. Were these people officially diagnosed with ME/CFS and have all the hallmark symptoms? How did it get triggered? I wonder if they just have CFS-like symptoms from years and years of chronic stimulant use amd ADHD. The problem is there’s this huge confounding other illness (ADHD) with some overlapping symptoms that muddies the waters in determining what symptoms are ME/CFS and what are ADHD or ADHD med use related.

I would think the cognitive dysfunction caused by ME/CFS is quite different than that from ADHD, it’s not a loss of focus, it’s more a slowing of processing speed and difficulty concentrating on analytical work for example because your brain feels like someone poured concrete into it and it literally feels on fire all the time. You can stay focused on the task it just takes a hell of a lot longer. You can often push yourself hard and recruit more brain areas to try and overcome it and speed things up and it works sometimes but exhausts you a lot and causes PEM (unless of course you are severe none of this is possible). And when PEM is really bad the symptoms are so debilitating that you can’t pay attention to anything and have to lie in bed staring at the ceiling, but that’s different than the short attention span and inability to stay focused on one thing before getting distracted with something else of ADHD? (and that kind of dopamine dysfunction)

 

[junkcrap50]

Do you mean ADD when you say ADHD? Small technical difference as ADHD is hyperactivity disorder, which I have not seen among CFS patients. However, ADD I think can be a symptom of ME/CFS, which ultimately is a consequence and presentation of cognitive dysfunction, brain fog, & mental PEM.

 

[leokitten]

If you read the symptoms of adult ADD I just don’t believe they don’t map to ME/CFS cognitive dysfunction symptoms. For example ppl with adult ADD can hyperfocus on things they like but easily become distracted or unable to pay attention to things that bore them. This is not the case with ME/CFS cognitive dysfunction.

Some of the adult ADD symptoms. Do you notice that none of them say anything about having debilitating fatigue and very low energy causing inability to complete tasks? It’s very easy to try and map any cognitive dysfunction symptoms to this, because they are very general. But in reality I think they are quite different. Just because maybe brain fog exists in both doesn’t mean it has the same underlying cause.

Also stimulants will help people with ADD, but they don’t help and can harm in ME. Why is that if you think many pwME also have ADD?

What are Common Adult ADHD Symptoms?​

• Inattention
  • Poor attention to detail
  • Difficulty getting started and completing tasks
  • Difficulty focusing and regulating attention
  • Forgetfulness
  • Poor time management, organizational skills
• Impulsivity
  • Fidgeting
  • Restlessness
  • Interrupting frequently
  • Talking excessively
• Emotional dysregulation
• Low frustration tolerance

 

[hapl808]

I would think the cognitive dysfunction caused by ME/CFS is quite different than that from ADHD, it’s not a loss of focus, it’s more a slowing of processing speed and difficulty concentrating on analytical work for example because your brain feels like someone poured concrete into it and it literally feels on fire all the time. You can stay focused on the task it just takes a hell of a lot longer. You can often push yourself hard and recruit more brain areas to try and overcome it and speed things up and it works sometimes but exhausts you a lot and causes PEM (unless of course you are severe none of this is possible). And when PEM is really bad the symptoms are so debilitating that you can’t pay attention to anything and have to lie in bed staring at the ceiling, but that’s different than the short attention span and inability to stay focused on one thing before getting distracted with something else of ADHD? (and that kind of dopamine dysfunction)

Good description. I tried stimulants once (post ME/CFS) and just felt a bit more awake - didn't really help with the rest, whereas description I've heard of ADHD treated with stimulants can sound remarkable. And of course I crashed horribly after my one 1/4 dose stimulant.

 

[hmnr asg]

Good description. I tried stimulants once (post ME/CFS) and just felt a bit more awake - didn't really help with the rest, whereas description I've heard of ADHD treated with stimulants can sound remarkable. And of course I crashed horribly after my one 1/4 dose stimulant.

same here, i felt semi-normal for an hour and then a huge crash.

If you read the symptoms of adult ADD I just don’t believe they don’t map to ME/CFS cognitive dysfunction symptoms. For example ppl with adult ADD can hyperfocus on things they like but easily become distracted or unable to pay attention to things that bore them. This is not the case with ME/CFS cognitive dysfunction.

Some of the adult ADD symptoms. Do you notice that none of them say anything about having debilitating fatigue and very low energy causing inability to complete tasks? It’s very easy to try and map any cognitive dysfunction symptoms to this, because they are very general. But in reality I think they are quite different. Just because maybe brain fog exists in both doesn’t mean it has the same underlying cause.

Also stimulants will help people with ADD, but they don’t help and can harm in ME. Why is that if you think many pwME also have ADD?

I see your point! I didnt quite think that our inattention or our ADHD (or ADD, thanks @junkcrap50 for the clarification) is a symptom of CFS, rather than a cause, but I see your point here. I think I cant pay attention because im tired, rather than i cant pay attention because of ADD.

I think a lot of Reddit users think they have ME but weren’t ever diagnosed properly, so who knows.

I agree with this 100%. There is a lot of people there who dont really have CFS. A lot of teenagers who have self diagnosed, and if you push back and try to get more information to clarify their diagnosis for them they will lose their $hit and claim you are triggering and gaslighting them.

 

[hapl808]

I agree with this 100%. There is a lot of people there who dont really have CFS. A lot of teenagers who have self diagnosed, and if you push back and try to get more information to clarify their diagnosis for them they will lose their $hit and claim you are triggering and gaslighting them.

Yeah, which is weird. I get it, but not how I'm wired. If someone today is like, "Maybe you have XXX disorder." I'm always happy to look it up and consider it - partially because I consider ME/CFS an arbitrary symptom disorder and not a distinct disease. If we didn't know about HIV but we knew about AIDS, we might mix up people with various cancers and AIDS - as we did in the early stages when they were calling it gay cancer. Which wouldn't mean that cancer or AIDS wouldn't still be serious - and therein lies the problem with ME/CFS.

I think there's a significant danger when patients become 'attached' to a diagnosis, because it's not an identity, it's just an illness. Especially in a world where diagnosis cannot, almost by definition, be definitive.

I understand it, though, because we're constantly gaslit and marginalized by the people who are supposed to be helping us. If I accepted some of the ME/CFS limitations earlier, maybe I could've avoided my current state - but I went too far in the other direction and just kept ignoring ME/CFS entirely since it didn't sound particularly treatable, I didn't care about a diagnosis because I refused to be that limited. Unfortunately, I would've vastly preferred those 'limitations' to where I ended up.

For years I viewed these forums for info about supplements, but always ignored the more 'histrionic' seeming posts. Ironic to eventually find yourself being one of those people. As I always say, when I see friends or physicians who can't understand our illness, I remind myself that even when I was mild-moderate, I didn't understand what severe could feel like.

 

[leokitten]

I see your point! I didnt quite think that our inattention or our ADHD (or ADD, thanks @junkcrap50 for the clarification) is a symptom of CFS, rather than a cause, but I see your point here. I think I cant pay attention because im tired, rather than i cant pay attention because of ADD.

I don’t know what dementia feels like but I always likened ME cognitive dysfunction to my brain being in a dementia like state. Everything seizes up, clogged, on fire, intense encephalitis like pain, can’t even get through a thought let alone think my way out of a paper bag, everything misfiring

 

[Jackb23]

I used to have a very good response to zoloft at 200 mg. After 100-150 mg, it starts to inhibit DAT and you get a lot more dopamine. Unfortunately, I dont know if I will be able to get it this high again. I am only on 37.5 right now and it is tough!!! SERT occupancy at this dose is almost 70-80% and the higher doses only get to 80-90% so perhaps I will be able to make it with the zoloft.

I tried abilify in 2017 and I remember being super conflicted. I had just done rTMS and my options werent much. I usually took 200 mg zoloft, 450 wellbutrin and meditated and this gave me a ton of energy and peace. Unfortunately, after rTMS I could no longer tolerate these things. Coffee would make me way too sped up. Lithium of all things would also make me incredibly restless. So I tried abilify. I remember immediately feeling better but also being so restless at night that I felt like I was going to die. I quit after 2 or so days for my safety.

A lot has changed in my brain since then: 30 ketamine infusions and a shit ton of neurofeedback. Right now I am mild (pretty much always have been since I came down with this is 2015). Whats really bothering me though is extreme anhedonia. I cant even watch TV. I am thinking of trialing abilify again but at a much lower dose (1 mg instead of 5 mg). I could meditate now but would rather not trigger derealization again so I am going to refrain until my brain either resets from the NF or I learn something that I can use to combat it.

 

[LJS]

I have tried to skim through the 78 pages of this thread but didn't see anyone who is having the effect I am having. I started at 0.1mg (0.1ml) yesterday and upped to 0.2mg (0.2ml) today. Both days the dose has knocked all the energy out of me, made me dizzy, and has made me very brain fogged. It is so odd as everyone talks about starting as hard to tolerate as it is energizing. Anyone get the energy sucked out of them with abilify?

 

[bob800]

Both days the dose has knocked all the energy out of me, made me dizzy, and has made me very brain fogged. It is so odd as everyone talks about starting as hard to tolerate as it is energizing. Anyone get the energy sucked out of them with abilify?

I had a similar reaction to comically tiny doses. I tried it a few more times and same thing.

I wonder if we would tolerate a different dopaminergic drug like selegeline better.

 

[nolongerdiseased]

I have tried to skim through the 78 pages of this thread but didn't see anyone who is having the effect I am having. I started at 0.1mg (0.1ml) yesterday and upped to 0.2mg (0.2ml) today. Both days the dose has knocked all the energy out of me, made me dizzy, and has made me very brain fogged. It is so odd as everyone talks about starting as hard to tolerate as it is energizing. Anyone get the energy sucked out of them with abilify?

The first few days it made me drastically more forgetful and fogged up. I forgot to do my seatbelt up three times and forgot to put my shoes on the same day. That dissipated after the first week and it did give me much better energy. Perhaps try to stay steady on your starting dosage of 0.1mg for a couple of days before upping it? I got very severe mood symptoms when I tried to double my dose from 0.5mg to 1mg and so stayed at 0.75mg, though our side effects are clearly different.

 

[Viala]

I wish someone had warned me about ME when I contracted it in 2008, I was 19 back then and now I'm thinking I might have been able to recover if i'd just rested enough for a year or two. Healthcare professionals told me I'm just depressed and in bad shape (mind you, I worked two physical jobs, went running several times a week, worked out at gym, rode my bike everywhere... And suddenly I wasn't able to recover from exercise anymore ).

I wish someone had warned me as well, but the fact is even if I had this knowledge, I still would not be able to stop everything, rest and recover. I had to work. I can't count how many times I felt much, much better meaning I felt practically recovered, being able to do demanding physical and mental tasks, for weeks, just to crash badly because I had to work and my work is what always made me crash.

Sure I could get another job instead, but would I be able to do 8 hours daily at that point? I doubt it. It was a choice between doing less hours and crashing badly, and doing more hours and crashing anyway because it would have been too many hours. A race against the clock and the energy. People who don't have to worry about that at least have a chance to recover and try different options.

 

[wastwater]

 

[bob800]

@LJS did you continue with the ability? Did the fogginess / low energy go away?

 

[Sizzle]

Have there been more studies done besides the Bonilla one?

 

[jaybee00]

Not that I know of.

 

[Dude]

Okay, this sounds interesting. Someone found a drug that "resets" the abilify effect. Which means the effect dont wear off over time. Definitly worth a shoot for those who had good results with LDA.

https://www.reddit.com/r/cfs/comments/15gqxs9

 

[Treeman]

Okay, this sounds interesting. Someone found a drug that "resets" the abilify effect. Which means the effect dont wear off over time. Definitly worth a shoot for those who had good results with LDA.

https://www.reddit.com/r/cfs/comments/15gqxs9

@Hip I may be wrong, but I think I remember you writing somewhere once that this wouldn't work?

 

[hmnr asg]

Why are they taking amisulpride every other day ? That is strange since it has so much shorter half life than abilify. Someone also raised this issue on that thread as well. Maybe @Hip could shed some light behind the possible rationale there ?

 

[jaybee00]

Please note that this person is also taking Duloxetine!! Can anyone who is on Reddit how long he has been on duloxetine and why was he prescribed this?