matth543: Abilify damage idk what to do

[matth543]

Hi i was hospitalized in feb for mental health reasons basically a panic attack. they put me on abilify, i have no mental condition (schizo, bipolar etc) I have been extremely stupid, clumsy, forgetful since being on it. I was only on it for a few a week and when i came out of the hospital i couldnt do things i could normally do anymore, i went off it and everything stayed the same. I felt so awful feeling this way i went back into a hospital and they putting me back on it and i ended up going off it again a month later cause i knew its what was causing all the problems. Im seeing a neurologist next week i want to figure out if i have brain damage and i also might have TD the movement disorder that abilify can cause cause im pretty sure my hands are twitchy and shaky. I know my brain isnt normal because I compete in esports (video games) and I havent been able to since i started abilify, inaccurate, poor judgement, and just really bad at it now. I also have a hard time forming sentences i just cant think of the right words sometimes i feel so stupid. I feel like the rest of my life is ruined, ill never be able to go to school like these, compete which i was planning on making my career for a long time, or even get a decent job because of how dumb and clumsy i am. its been a year so it feels like brain damage i dont really have any hope anymore. I feel like things get better for people but they probably dont fully recover. Not everyone does something like i do that is pushing their mind to its limits constantly so thats why its effecting me so much. I just dont want to live like this anymore im only 20 and it feels like my life is over. 

[Gridley]

Welcome to SA, matth543.  I'm sorry you're going through this.  

 

Since you were on the Abilify for only a short time the first time, it sounds like you had adverse reaction to the Abilify.  You're also likely suffering withdrawal from being on it for a month the second time..  The good news is that adverse reaction/withdrawal is a much more likely explanation for your brain problems than permanent brain damage.  Cognitive brain issues are a typical withdrawal symptom.   It is also typical to experience withdrawal symptoms a year (or longer) after you stop taking the drug.  The other good news is that you will recover and heal.  However, it will take some time, and we can't predict how long.  Just to prepare you, doctors generally know nothing about protracted withdrawal from psychiatric drugs and don't believe it exists.  It does.

 

So that you have a better understanding of what you're experiencing, here is some information on withdrawal.

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.  Confusion, cognitive difficulties and memory problems are included in the list.

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction thread, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

[matth543]

7 minutes ago, Gridley said:

Welcome to SA, matth543.  I'm sorry you're going through this.  

 

Since you were on the Abilify for only a short time the first time, it sounds like you had adverse reaction to the Abilify.  You're also likely suffering withdrawal from being on it for a month the second time..  The good news is that adverse reaction/withdrawal is a much more likely explanation for your brain problems than permanent brain damage.  Cognitive brain issues are a typical withdrawal symptom.   It is also typical to experience withdrawal symptoms a year (or longer) after you stop taking the drug.  The other good news is that you will recover and heal.  However, it will take some time, and we can't predict how long.  Just to prepare you, doctors generally know nothing about protracted withdrawal from psychiatric drugs and don't believe it exists.  It does.

 

So that you have a better understanding of what you're experiencing, here is some information on withdrawal.

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.  Confusion, cognitive difficulties and memory problems are included in the list.

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Please research all supplements first and only add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction thread, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

Thanks for the quick response, this makes sense to me but how is it only a withdrawal problem if i experienced the same things while still being on it? 

[Gridley]

@matth543

I believe your response to the first round was an adverse reaction.  Since in your second round you were on it a month, which is when withdrawal can be expected, I attributed your symptoms to withdrawal, but it very well could have been adverse reaction instead or a combination.  Symptoms for both are similar.  

Edited December 7, 2019 by Gridley

[Altostrata]

Welcome, matt.

 

How did you go off Abilify the last time around?

[matth543]

@Altostrata just stopped taking the pills

 

[matth543]

I had to take olanzapine for 6 months, this is my second antipsychotic. Ive been off it for 6 months. The first one abilify, I only took for a few weeks a few years ago and the symptoms went away on their own. I had similar symptoms as that one at first, brain fog so I didn't think it would suddenly get so much worse. I didnt want to stay on it but I didnt know why I was having issues and my family kept telling me to keep taking it without knowing anything about the drug so I did. I found out later I was just having insomnia problems and that triggered mental instability after days of not being able to sleep. I take melatonin every night now, that problem is solved I havent had any issues since stopping olanzapine. The doctors who gave it to me didnt try to figure out why I was having problems they just said this could be a mental disorder and gave me olanzapine. (Ive never been diagnosed with schiz, bipolar I dont have those) I thought I was just going to be able to get off it and the side effects would go away like they did with abilify but after 6 months I became disabled. Im going to clarify that the symptoms started before stopping or changing dosage of the medication at all and never changed, its been the same illness since before stopping the drug. I also made no lifestyle changes to warrant such an extreme disability. Ive tried over the counter medications for my symptoms nothing helps of any significance. The drug left me unable to work drive or enjoy hobbies at all, I shower I use the computer I exercise and I eat there really isnt much I can do although I do have a healthy lifestyle and diet. This is why I need help its been 6 months of nothing but torture and I cant live the rest of my life this way, Im in my early 20s I dont want to lose the best years of my life to this. I used to compete and practice every day, I want to enjoy my life again. I want to start working and move out on my own, my family doesnt have sympathy for my illness they just want me out of their house at my age, Im being treated badly I need to get this treated and move on with my life. I just want to be happy again. 

 

Symptoms: 

 

• Fatigue, always tired, yawning all day
• Bad coordination very 
• Bad memory confusion less intelligent, Negative feelings amplified, hard to think positive or enjoy things. likely connected to the fatigue and inflammation. (This makes simple daily tasks stressful or frustrating, difficult to hold a conversation and have normal relationships with people)
• Nightmares most nights
• Overall muscle and or bone weakness, I feel strain from holding my arm up lifting things, eating, feet and legs hurt if I stand for too long. My joints hurt often, harder to use stairs. I feel very sore when stretching. 
• Sensitive to pain
• Extreme eye sensitivity to light, itchy, groggy 
• Throat always stuffed I have to clear before talking. I gag cough a lot, throwing up without throwing up.  Usually when I stand up or do any kind of physical activity.
• Heart burn
• Rash on head neck
• Rectal pain bleeding
• Shortness of breath 
• Change in taste
• Can’t work drive do any hobbies

 

All of these symptoms started at the exact same time

 

The reason why I'm certain this is an autoimmune disease is because Ive read of many others on olanzapine that experienced the same thing after the same time on the drug and it never got better even years after stopping the drug, only worse.

 

Ive narrowed it down to two diseases. Rheumatoid Arthritis and or Sjogrens Syndrome. Here is a source of RA being listed as a possible side effect. I have been working with someone personally who got the same symptoms at the exact time frame I got it of taking the drug, hes been ill for years and its only gotten worse. He was able to get into a rheumatologist office earlier than me, and was diagnosed with Sjogrens Syndrome. He didnt have to mention the drug at all and was diagnosed the only difference is hes been ill for years and ive only been ill for 6 months so my lab work was negative and his was positive this is normal for autoimmune diseases. I may have to mention to the doctor why I really believe I have one of these diseases to be asked for additional testing, or he may just ask about my medication history which is fine. The person Im working with told me he didnt continue trying to get treatment after the diagnoses, so I wouldnt know the outcome if he did. I am very afraid of being denied treatment with their medications which are very good when someone finds one that works for them. I need advice on how to work with doctors since my communication skills are very poor, and doctors havent been nice or sympathetic to me at all in the past. I also need help finding any information I can use as sources about olanzapine and I guess antipsychotics causing autoimmune diseases, I would like something on sjogrens syndrome since its more likely what I have, thats what he got diagnosed with. SS is really similar to RA though so that might help.. Im going to bring my symptoms in as notes and any sources I can find to justify me having this disease. I may or may not have to provide information about the drug depending on many factors but I have to come prepared, this appointment is extremely important, its on November 12th. 

 

Of course I am open to ideas of this not being the suspected diseases and you can leave that info as well if you want but I want to be tested for the disease and if I am positive like the other person I can be treated if not Ill have to go that route. For advice its about the disease and the drug causing it and other possibilities second. 

 

Ive gotten mixed responses about if someone with the disease is able to get treatment, I am suffering daily and its totally effected my life to the point where I cant work drive hobbies or even have normal conversations so that should warrant treatment if Im willing to take the risks which I am. I hope I am not demeaned and they think Im making this up or something like that. Most people on the subreddit for the diseases said if one has it they should be allowed since the diseases slowly damage many parts of the body and treatment slows that by a ton, never mind the disabling effects of the disease not allowing me to do the things I need to. So how do you think I should talk to the doctor and explain everything, since when I normally talk to doctors I get brushed off and rudely interrupted and they act like Im not worth listening to or helping or something when Im suffering daily, I dont know what Im doing wrong. 

This was a lot of info, Thanks so much for reading.

 

Edited October 31, 2021 by ChessieCat
unbolded symptoms and added bullet points