Martin aka paused||M.E.
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Abilify- Stanford Clinic Patients
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mitoMAN
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Did you ever try going that high Martin? 3mg was my maximum. I might try out more at one point.
Wondering if your depression also got worse when you compared 2mg to 4mg (effective dosage right?)?
Wondering if your depression also got worse when you compared 2mg to 4mg (effective dosage right?)?
Martin aka paused||M.E.
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I was on 4mgs. Never went that high. Another guy went up to 8 but didn't overcome tolerate so I don't think it's worth the risk.
Can't tell you, I was on 2 mgs perhaps for three days
mitoMAN
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Nimodipine
Started with 15mg and had no side effects, quickly worked up to 3x30mg (final dosage) one week ago.
Since then my days have become WAY BETTER. My parents notice I am awake much longer, sitting in front of computer, my brainfog feels much less, my girlfriend also noted we had much more conversations.
However now that I am more "aware and awake" I notice that I have some depression sitting around since starting ABILIFY. I didnt notice it that much before, because I was mostly "knocked-out" after Abilify lost most of its effect.
But now that I am more awake again, I notice that I feel depressed... So depression is kind of preventing me from using all my newly gained "energy".
I am abit afraid to stop Abilify because I think it still has at least 30% of its effect. So its not totally gone.
Started with 15mg and had no side effects, quickly worked up to 3x30mg (final dosage) one week ago.
Since then my days have become WAY BETTER. My parents notice I am awake much longer, sitting in front of computer, my brainfog feels much less, my girlfriend also noted we had much more conversations.
However now that I am more "aware and awake" I notice that I have some depression sitting around since starting ABILIFY. I didnt notice it that much before, because I was mostly "knocked-out" after Abilify lost most of its effect.
But now that I am more awake again, I notice that I feel depressed... So depression is kind of preventing me from using all my newly gained "energy".
I am abit afraid to stop Abilify because I think it still has at least 30% of its effect. So its not totally gone.
Springbok1988
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Who prescribed the Abilify to you all? Your GP?
Are you getting it compounded or are you splitting 2 mg pills?
Are you getting it compounded or are you splitting 2 mg pills?
Most people just bought it online I think, to dose what I do is crash 10mg Abilify pill into powder and add baking soda to be able to measure 0.25mg of active ingredient:
133mg pill + 667mg baking soda = 800mg. (I measured the actual weight of the pill with mg scales)
So now to get 0.25mg Abilify: 800 / 40 = 20mg I did this to be able to measure dosage more accurately. I mixed the powder for around 10minutes so that the active ingredient is spread equally..
0.25mg is 1/40th of 10mg abilify pill.
You can buy mg scales cheaply here, I bought this one.
Most people buying from reputable online pharmacies that offer authentic generic 1mg/ml oral solution or pills
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I just want to add that ME specialist and Neurologist Dr. Benjamin Natelson (NYC, NY) also prescribes Abilify. He prescribed it to me last month. I'll post my experience when conclusive.
I found that moclobemide by itself did not improve core ME symptoms but combining it with Abilify seems to create a synergistic effect against ME symptoms.
The only thing I noticed moclobemide did alone was make my evening ME hot flashes reduce and almost completely disappear. I only started having this ME symptom the last couple years or so.
@Martin aka paused||M.E. is bupropion having any positive effect on your ME symptoms?
Martin aka paused||M.E.
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Yes! Much weaker than Abilify but noticeable
Possibly a positive effect of centrally acting H1 antagonists/inverse agonists, particularly hydroxyzine which has the lowest anticholinergic effects
Histamine induces microglia activation and dopaminergic neuronal toxicity via H1 receptor activation. Rocha et al. J Neuroinflammation (2016)
Sorry a barrage of questions… Are you taking Wellbutrin XL, what’s your dosing regimen, have you also thought about trying methylphenidate or dexmethylphenidate?
So is Abilify not working at all for you anymore at any dose?
Martin aka paused||M.E.
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To be precise: I'm taking Bupropion 300 my. Yes dexmethylphenidate is on my list! Among others.
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Martin aka paused||M.E.
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Right. No effect no matter what dose
Yes I imagine too modafinil, armodafinil, and other atypical eugeroic meds. I’m also thinking of adding dexmethylphenidate to the low-dose Abilify and moclobemide combo.
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5vforest
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I wish that we had some real data on Abilify.
Personally I started around 2-3 months ago on a small dose, immediately felt an effect, and slowly made my way to 1mg/day.
After 2 months or so, I feel like the benefits have mostly worn off. I would say that it's working maybe 50% as well as when I started? I am back to sleeping multiple hours during the day, and again for 8 hours at night.
I have tried increasing the dose, and I'll stay at 2mg for a bit. Not really willing to try anything more.
On the other hand, I suppose I could try a much lower dose again. This is why I am frustrated that we have no data on what works, because of the way the study was structured :/
Personally I started around 2-3 months ago on a small dose, immediately felt an effect, and slowly made my way to 1mg/day.
After 2 months or so, I feel like the benefits have mostly worn off. I would say that it's working maybe 50% as well as when I started? I am back to sleeping multiple hours during the day, and again for 8 hours at night.
I have tried increasing the dose, and I'll stay at 2mg for a bit. Not really willing to try anything more.
On the other hand, I suppose I could try a much lower dose again. This is why I am frustrated that we have no data on what works, because of the way the study was structured :/
Anecdotally, from what I’ve seen going higher than 1-2 mg does nothing more for ME other than increase side effects. It’s very clear what we have IS NOT depression, nor psychosis or schizophrenia (for those reading this wondering if ME is psychiatric no it’s not!) because higher doses would clearly help more for these conditions. For so many pwME I’ve read their testimonials going higher doesn’t work and I think actually decreases the time to tolerance.
I would go as low a dose as possible that works for best benefit. Generally no more than 1 mg maybe in some people 2 mg but most people I think 1 mg is it.
Also beware that comparing to the first 1-1.5 months there’s a lot of relative bias there, because you went from feeling really terrible to having a great improvement, and then as time goes by I don’t think the improvement decreases 50% it’s a lot of this relative bias that now you are used to it more. I agree the absolute improvement isn’t as good as the initial period, but at least in me it’s not 50% of what it was, more like 70-80% maintained. You have to subtract that relative bias you experienced.
mitoMAN
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I tried to lower my dosages back to 0.5mg / 1.25mg and now again 2.5mg to compare (within always allowing 20 Days for the dosage to adjust).
I have to say that 2.5mg is giving me some energy again BUT with the side effect of major depression and jittering, shivering attacks. (Jawbones jumping up and down as if I was freezing cold)
My psychiatrist offered to start me on a anti depressant next to low dose abilify. I might give that a try. As I believe the energy benefits would be worth keeping if I could get rid of the depressive side effects.
2.5mg allows me to get up in the afternoon and do some sitting, chatting on phone etc.
Without Abilify I am in bed till late at night and then slowly get some energy for 2-4 hours.
But I can still get up to eat and pee. So I am not very severe at all but regular severe I would say. But I got slowly worse overt the last year. Started Abilify beginning of January and since then I have been a tad bit better then last year for sure.
My main effects peaked in about MARCH when I was on 1mg-1.25mg and then slowly mostly vanished.
During that time I had some bigger improvements. Depression is with me since I started Abilify however!
I have to say that 2.5mg is giving me some energy again BUT with the side effect of major depression and jittering, shivering attacks. (Jawbones jumping up and down as if I was freezing cold)
My psychiatrist offered to start me on a anti depressant next to low dose abilify. I might give that a try. As I believe the energy benefits would be worth keeping if I could get rid of the depressive side effects.
2.5mg allows me to get up in the afternoon and do some sitting, chatting on phone etc.
Without Abilify I am in bed till late at night and then slowly get some energy for 2-4 hours.
But I can still get up to eat and pee. So I am not very severe at all but regular severe I would say. But I got slowly worse overt the last year. Started Abilify beginning of January and since then I have been a tad bit better then last year for sure.
My main effects peaked in about MARCH when I was on 1mg-1.25mg and then slowly mostly vanished.
During that time I had some bigger improvements. Depression is with me since I started Abilify however!
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