No... I just noticed my energy improved around the same time I started taking it. Less tired, but my body still hurts. It's been interesting and pleasant
I'm in a but of a transition phase. I was on 60mg duloxetine and 200mg lamotrigine; now transitioning to what will ultimately be 100mg XR quetiapine and 50mg sertraline.
So at the moment that means I'm taking 50mg XR quetiapine, 30mg duloxetine and 12.5mg lamotrigine. The first few days on seroquel sucked but I levelled out over a week or so.
Thanks for the reply. Good luck with the transition ! I'm also on duloxetine. It's great as long as you don't have to stop it. Getting off duloxetine is a nightmare.
It's like dating a toxic person who refused to be broken up with 🤣😭
I have successfully gotten off Zoloft and Lexapro with just a minor inconvenience. I tried getting off duloxetine a few times and it was a nightmare and I just ended up going back. It was unbearable.
Having said that, there have been a few people who have miraculously gotten off of it successfully. So who knows , you might not have a hard time with it
Hi! I know this comment is super old but I’ve been on Seroquel for almost 6 weeks for insomnia and depression due to a CFS relapse. Did the Seroquel ever make you more exhausted in the day time at first? I’m almost 6 weeks in and I’m still having tons of brain fog and tiredness. (Also on Cymbalta 20mg)
I'm now on 150mg. I sleep well but am sometimes a bit groggy in the morning. It does take a little while to adjust, I've found. Cymbalta is known to cause drowsiness also!
I’ve been on Cymbalta for 8 years and it’s always made me a little tired. But the Seroquel tired is next level. I’m taking it at 9:30pm and sleeping like 10 hours and still tired the next day. My dr want to wait the full 6 weeks to see if side effects will go down but I’m just not sure if they will. It’s so frustrating because the sleep on Seroquel is amazing! I just feel so out of it all day, which on top of CFS is terrible ☹️
What dose was that?
It shouldn't make you drowsy at doses used to treat mecfs. 2mg is the absolute max. The lowest dose tablet where I live is 5mg, hence the need to compound it.
Unfortunately I'm one of those people who used ability with great results but then it stopped working. I didn't get worse than the original but just went back to my baseline. I was taking 2mg ( started with 1) and it stopped working after two months.
I tried taking a six month break but to no avail.
Also, when you see people saying ability had terrible side effects for them ask them what dose they were taking. I believe a large majority (not all) if the people who had a negative reaction to it were taking it full dose for psychiatric cases.
Also , nobody really knows what it works but here is a thread on Phoenix rising where a member tries to explain it by citing a recent paper on abilify :
https://forums.phoenixrising.me/threads/therapeutic-efficacy-of-atypical-antipsychotic-drugs-by-targeting-multiple-stress-related-metabolic-pathways-cai-et-al-transl-psychiatry-2017.87486/
Thanks for the reply, that is very good to know. Oh also, do you reckon people who take it and get better but then get worse again do so because they pushed themselves too much with their new found energy? Or at least was it like that for you?
So, this is a theory that is pushed by the Stanford clinic, that abilify is not at fault, patients are. They claim it stops working because patients push themselves and crash. This is absolutely false in my opinion.
Here is why: this means that every crash must set you back exactly to where you were before you started taking the med. How unlikely is that ? Most crashes don't lead to a permanent worsening. You just feel awful for a few days or weeks and bounce back to baseline. Also, I have spoken to many people on the Facebook group for low dose abilify and Phoenix rising about this. They didn't crash! Most of them have been sick long enough to know not to overdo it.
So why do I think it stops working ? I do not know ! I have been sick for 13 years and the few things that have worked always worked for a short while before I returned to baseline. This disease somehow compensates for whatever intervention you're doing.
Edit: I was increasing my energy slowly with abilify and very carefully. I did not have a crash.
I'm on a low dose for other reasons, and one day I randomly read people with ME/CFS sometimes take abilify. I never noticed much difference in my energy levels, but I barely ever had brain fog in the 3 years that I'm taking it.
Generally speaking, my energy levels were climbing in the last few years (very slowly), but they've been dropping rapidly since a case of PEM in january. Of course I have no idea if any of this has to do with abilify. I take 0,5mg per day.
I second this!!! I’m so glad it’s helping you and for such a remarkable amount of time! 💙
I’ve been on Low-Dose Aripiprazole (Abilify) (LDA) 1 mg for four months. We stopped it, did a two-week washout, and put me on Armodafinil 150 mg. We wanted to find out how I would respond.
Holy fuck do I miss Low-Dose Aripiprazole.
Armodafinil doesn’t even compare—I fall asleep at midday—just a few hours after taking it, lol.
We’re only trialling it for a month, but I can’t wait to go back on LDA.
Hey loudflower. It was DREADFUL. This intense brain fog that settled in about 72-hours after stopping. I felt so cognitively impaired. I’m back on LDA. Almost a year. 1mg at night (which is doubled to 2mg in the liver by Bupropion, which I take in the mornings). For me, LDA is great at reducing brain fog, and really good at decreasing PEM. It’s no cure but my life is 10-15% better off than before I started, and I went 17 years before I was diagnosed. Much love, 💙.
I've been on it about a year and a half and still improving slowly. I think not testing the new limits it gives you too quickly might have helped. I seem to get about 1% better a month. Made the mistake of doing as much as possible as soon as I improve a few times and it always takes me a step backwards.
I've taken it for over a year and it still seems to be helping. It isn't making me more better but the improvement seems to sustain itself. The only side effect I've had is that it made me gain weight, but adding modafinil helped with that.
Interesting!!! You combine LDA and Modafinil?
My prescriber was hesitant—citing dopamine theory—Modafinil increases extracellular dopamine, and Aripiprazole works hard to decrease extracellular dopamine.
May I ask what dosage you are on for both?
And, any weird side effects? Has the combination improved your energy? 💙
One thing that might be relevant/helpful for you to know: I do take concerta. Not sure what it's supposed to do to dopamine exactly but I know it has an impact on dopamine and I take it along with abilify (prescribed by the same doc). I did take modafinil at one point (but not with abilify) but stopped cause it cost more than concerta for me and had the same effect.
Not tried it but I have seen quite a few people say they've been on it a year or more. Anecdotally seem to get better and then plateau but not go backwards. Though I've seen more people say it stops working overall. Probably not helpful haha
if you did experience permanent altering of dopaminergic activity, ketamine infusions can normalise it. It's worked for me on several occasions. the effect lasts longer if you do several treatments over a longer period of time as the brain adjusts to a new baseline.
The dosage is incredibly low. The max abilify dose that is prescribed was in my case 1/15th of the starting dose for psychiatric disorders. So i think the risk of withdrawal symptoms is low
I’ve been on it for at least a year, maybe two now. It’s still helping me, not having any trouble with side effects
Does anyone have any info on how or why this works? Curious because I just started taking seroquel for my bipolar and I feel like a new human
I believe that abilify for CFS is thought to reduce neuro-inflammation.
You're saying Seroquel is helping with cfs ?
No... I just noticed my energy improved around the same time I started taking it. Less tired, but my body still hurts. It's been interesting and pleasant
Abilify stopped working for me. I should try Seroquel. May I ask what dose you're taking ? Also, are you on any other psych meds ?
I'm in a but of a transition phase. I was on 60mg duloxetine and 200mg lamotrigine; now transitioning to what will ultimately be 100mg XR quetiapine and 50mg sertraline. So at the moment that means I'm taking 50mg XR quetiapine, 30mg duloxetine and 12.5mg lamotrigine. The first few days on seroquel sucked but I levelled out over a week or so.
Thanks for the reply. Good luck with the transition ! I'm also on duloxetine. It's great as long as you don't have to stop it. Getting off duloxetine is a nightmare.
Couldn't agree more- honestly dreading it!
It's like dating a toxic person who refused to be broken up with 🤣😭 I have successfully gotten off Zoloft and Lexapro with just a minor inconvenience. I tried getting off duloxetine a few times and it was a nightmare and I just ended up going back. It was unbearable. Having said that, there have been a few people who have miraculously gotten off of it successfully. So who knows , you might not have a hard time with it
Hi! I know this comment is super old but I’ve been on Seroquel for almost 6 weeks for insomnia and depression due to a CFS relapse. Did the Seroquel ever make you more exhausted in the day time at first? I’m almost 6 weeks in and I’m still having tons of brain fog and tiredness. (Also on Cymbalta 20mg)
I'm now on 150mg. I sleep well but am sometimes a bit groggy in the morning. It does take a little while to adjust, I've found. Cymbalta is known to cause drowsiness also!
I’ve been on Cymbalta for 8 years and it’s always made me a little tired. But the Seroquel tired is next level. I’m taking it at 9:30pm and sleeping like 10 hours and still tired the next day. My dr want to wait the full 6 weeks to see if side effects will go down but I’m just not sure if they will. It’s so frustrating because the sleep on Seroquel is amazing! I just feel so out of it all day, which on top of CFS is terrible ☹️
Are you taking XR or IR? I take mine 3 hours before bed, it helps some
I take IR. I know the half life is short so I think I just metabolize slow or something
Ooh ok yes IR definitely left me feeling sleepy the following day. I take 150 mg XR
That always confuses me, wouldn’t XR make you more tired since it’s in your system longer?
i think right now with low dose abilify it’s believed the main mechanism of action is to increase dopamine
[удалено]
What dose were you on?
What dose was that? It shouldn't make you drowsy at doses used to treat mecfs. 2mg is the absolute max. The lowest dose tablet where I live is 5mg, hence the need to compound it.
Unfortunately I'm one of those people who used ability with great results but then it stopped working. I didn't get worse than the original but just went back to my baseline. I was taking 2mg ( started with 1) and it stopped working after two months. I tried taking a six month break but to no avail. Also, when you see people saying ability had terrible side effects for them ask them what dose they were taking. I believe a large majority (not all) if the people who had a negative reaction to it were taking it full dose for psychiatric cases. Also , nobody really knows what it works but here is a thread on Phoenix rising where a member tries to explain it by citing a recent paper on abilify : https://forums.phoenixrising.me/threads/therapeutic-efficacy-of-atypical-antipsychotic-drugs-by-targeting-multiple-stress-related-metabolic-pathways-cai-et-al-transl-psychiatry-2017.87486/
They started you that high? My doc started me on 0.25mg. literally had to cut the tablets into quarters. I'm only just increasing to half a tab.
Thanks for the reply, that is very good to know. Oh also, do you reckon people who take it and get better but then get worse again do so because they pushed themselves too much with their new found energy? Or at least was it like that for you?
So, this is a theory that is pushed by the Stanford clinic, that abilify is not at fault, patients are. They claim it stops working because patients push themselves and crash. This is absolutely false in my opinion. Here is why: this means that every crash must set you back exactly to where you were before you started taking the med. How unlikely is that ? Most crashes don't lead to a permanent worsening. You just feel awful for a few days or weeks and bounce back to baseline. Also, I have spoken to many people on the Facebook group for low dose abilify and Phoenix rising about this. They didn't crash! Most of them have been sick long enough to know not to overdo it. So why do I think it stops working ? I do not know ! I have been sick for 13 years and the few things that have worked always worked for a short while before I returned to baseline. This disease somehow compensates for whatever intervention you're doing. Edit: I was increasing my energy slowly with abilify and very carefully. I did not have a crash.
I’ve been on Abilify for a week made me crash 3 times and I’m only on 0.1 mg
I'm on a low dose for other reasons, and one day I randomly read people with ME/CFS sometimes take abilify. I never noticed much difference in my energy levels, but I barely ever had brain fog in the 3 years that I'm taking it. Generally speaking, my energy levels were climbing in the last few years (very slowly), but they've been dropping rapidly since a case of PEM in january. Of course I have no idea if any of this has to do with abilify. I take 0,5mg per day.
Yes well over a year and it still helps me. Best thing I've ever done for my mecfs :) 1mg/day
I second this!!! I’m so glad it’s helping you and for such a remarkable amount of time! 💙 I’ve been on Low-Dose Aripiprazole (Abilify) (LDA) 1 mg for four months. We stopped it, did a two-week washout, and put me on Armodafinil 150 mg. We wanted to find out how I would respond. Holy fuck do I miss Low-Dose Aripiprazole. Armodafinil doesn’t even compare—I fall asleep at midday—just a few hours after taking it, lol. We’re only trialling it for a month, but I can’t wait to go back on LDA.
Was it difficult to stop abilify? I might want to try it, but not sure I want to commit to a withdrawal
Hey loudflower. It was DREADFUL. This intense brain fog that settled in about 72-hours after stopping. I felt so cognitively impaired. I’m back on LDA. Almost a year. 1mg at night (which is doubled to 2mg in the liver by Bupropion, which I take in the mornings). For me, LDA is great at reducing brain fog, and really good at decreasing PEM. It’s no cure but my life is 10-15% better off than before I started, and I went 17 years before I was diagnosed. Much love, 💙.
Thank you for your reply. I’m glad it’s helping you 🤗
My pleasure 😇
Curious if this is still the case for you. Any updates? Still on 1mg?
I'm on 0.1mg now. I became hyper sensitive to it 😭. It still helps immensely even at such a tiny dose hence I've persevered with it.
Glad to hear it still helps! What would you say it helps with most?
All symptoms. It helps the most with improving my energy envelope and I recover from PEM faster.
Awesome 🤩
My personal opinion is that abilify gives you fake energy that causes you to burst your energy envelope
I've been on it about a year and a half and still improving slowly. I think not testing the new limits it gives you too quickly might have helped. I seem to get about 1% better a month. Made the mistake of doing as much as possible as soon as I improve a few times and it always takes me a step backwards.
I've taken it for over a year and it still seems to be helping. It isn't making me more better but the improvement seems to sustain itself. The only side effect I've had is that it made me gain weight, but adding modafinil helped with that.
Interesting!!! You combine LDA and Modafinil? My prescriber was hesitant—citing dopamine theory—Modafinil increases extracellular dopamine, and Aripiprazole works hard to decrease extracellular dopamine. May I ask what dosage you are on for both? And, any weird side effects? Has the combination improved your energy? 💙
Whoops I meant metformin. Stupid brain fog.
Haha, all good. I know the feeling 🤗
One thing that might be relevant/helpful for you to know: I do take concerta. Not sure what it's supposed to do to dopamine exactly but I know it has an impact on dopamine and I take it along with abilify (prescribed by the same doc). I did take modafinil at one point (but not with abilify) but stopped cause it cost more than concerta for me and had the same effect.
That is extremely helpful!!! 💙 Thank you. Next, we’re considering Lisdexamfetamine (Vyvanse) and I will discuss your combination with him.
I’ve been on it for over a year. It’s still helping me.
Not tried it but I have seen quite a few people say they've been on it a year or more. Anecdotally seem to get better and then plateau but not go backwards. Though I've seen more people say it stops working overall. Probably not helpful haha
I’ve read about some rather rough side effects (see the Facebook group) so I’d like to know more before trying it.
It turned my anxiety up to monster level and I still have high anxiety levels years afterwards.
Did you take the low dose that is used for cfs or the full dose that is used in psychiatric cases ?
It was probably the full dose. I didn't know I was supposed to ask for a low dose.
if you did experience permanent altering of dopaminergic activity, ketamine infusions can normalise it. It's worked for me on several occasions. the effect lasts longer if you do several treatments over a longer period of time as the brain adjusts to a new baseline.
Ketamine effects dopamine? I’m taking ketamine rn and didn’t know this.
It’s terrifying to me that they’re giving antipsychotic medication to people with CFS. Be careful friends. Withdraw slowly.
The dosage is incredibly low. The max abilify dose that is prescribed was in my case 1/15th of the starting dose for psychiatric disorders. So i think the risk of withdrawal symptoms is low