Sad dad with broken body

[wish_to_live_again]

Hi all. This is my first post. I suppose I just wanted to put my story out there and see if anyone had ideas or feedback...

My tragic story started in 2021. I was a healthy, happy person. Married with beautiful 2 little ones (4 yo boy and 1 yo baby girl). Loved my family....Liked my job, rewarding but stressful. I have a history of anxiety but had managed it okay for many years without medication.

Anyways, in summer of 2021 I started to have really bad insomnia. Sleeping only 2-3 hours per night for about 4 weeks. I talked to a psychiatrist about it (had seen her years ago briefly) and she gave me Ambien. It didn't really help. Then she gave me the drug that wrecked me --- olanzapine. This drug made me sleep but it also made me extremely depressed. Also, I couldn't seem to get off of it. Every time I tried, my sleep would fall apart to ~2 hr per night again.

I ended up staying on the drug just to sleep. But after 6 months, I started having tremors in my hands. Then tremors in my neck. Then spasms all over my body. I quit the drug, but the symptoms only got worse. I was sleepless, and having tremors and spasms 24/7. A neurologist told me I had "drug-induced Parkinsonism".

After a month of constant tremors / spasms / no-sleep, I was having a mental breakdown and becoming suicidal. I tried to get counseling but it didn't help much. In the end, I was taken by the police on a 5150. In the psych ward, I was left alone in a chair for 30 hours. I mentally broke and tried to strangle myself to death for 1-2 hours. This led to further injury.

Today, I have no feeling in my mouth. I have constant nerve pain in my face and extremities. My cognition and memory are highly impaired. I still get tremors and muscle spasms but not as bad as before. I feel extremely disabled....I try to work but I can get very little done. Probably I will lose my job soon. Oh, and did I mention my wife took the kids and moved back to her parents 2000 miles away? Yes...my life is ruined.

I wish I could go back and change the past, but I can't. I love my kids. I still love my wife. But I cannot do much for them. And I am just in suffering non-stop. I feel dead inside already and just wish God would kill me. But here I am. Trying to figure out if there is a way to go on in this impaired state and have any kind of meaningful life. I don't know if it is possible... I just don't know.

 

[Sulyya]

What an awful circumstance to come from just trying to find help sleeping, I'm so sorry.
I haven't heard of it, are there any physical therapies or something to try?

 

[Walpurgisnacht]

I'm so sorry.
I ended up with benzo addiction from insomnia, but that hasn't affected me to anywhere close to this degree. I wish people who prescribe this shit so recklessly can be held accountable, but even then it wouldn't solve what has happened to you.
You deserve better...

 

[wish_to_live_again]

Thank you for the kind words. I have now realized the field of psychiatry has many incompetent doctors who are playing with their patients lives. So many people have been damaged or even ruined by a wrong psych drug. So many suicides as well :(

One thought that makes me think there might be a purpose before I die: shine light on the skeletons in the closet for the field of psychiatry. There are so many.

What an awful circumstance to come from just trying to find help sleeping, I'm so sorry.
I haven't heard of it, are there any physical therapies or something to try?

I haven't really looked into physical therapy, but anything is probably worth a try. My brain chemistry is messed up from the olanzapine, and now I have had a neck injury that I also believe caused me to have a traumatic brain injury (TBI). At least, I am experiencing much the same symptoms as someone with TBI.

 

[Zetsubou]

This is horrifying. Stories like this is the reason why I'm reluctant to take meds despite my mental health issues. I'm so sorry this happened to you.

I agree about trying out physical therapy, but no matter what you decide to do, I hope you can find peace.

 

[wish_to_live_again]

This is horrifying. Stories like this is the reason why I'm reluctant to take meds despite my mental health issues. I'm so sorry this happened to you.

I agree about trying out physical therapy, but no matter what you decide to do, I hope you can find peace.

We are conditioned to just accept the Dr's word and take what they give. I did this, even though I have a PhD in bioengineering and have been in the sciences for 16 years.

I have some rules that I think would be helpful for anyone considering a psych (or any potent ) drug:

1. Have you tried other avenues to address your issue? Talk therapy and exercise both can help alot. For sleep, work on sleep hygeine.
2. Have you tried natural substances? Herbals, vitamins, foods. If used right, even Marijuana can be helpful for a lot of people dealing with anxiety/insomnia.
3. Do you believe the diagnosis your Dr is giving you? Does it make sense to you?
4. Does the drug the Dr wants to give to you make sense for your diagnosis?
5. Does the dosage make sense?
6. What are the risks of the drug the Dr wants to give you? DEMAND to know the risks.
7. Look up the side effects online and see what patients are saying.
8. If you are unsure, do NOT take it. Get a SECOND OPINION.
9. If you start to take a new drug and experience serious side effects, I would at least consider to stop immediately.

This seems like a lot of work. But it could save your life.

 

[LaVieEnRose]

Antipsychotics are no joke. They caused me a lot of pain but not tardive dyskinesia. One of them (Latuda) caused my friend's eyelids to squeeze shut involuntarily and rendered him functionally blind. They gave him a 50/50 chance of it being permanent but fortunately it wasn't. I don't think they should be used for anything but psychosis as such.

I'm so sorry about what your life has been brought to. Have the doctors no insight at all as to what could improve your condition?

 

[wish_to_live_again]

Antipsychotics are no joke. They caused me a lot of pain but not yardage dyskinesia. One of them (Latuda) caused my friend's eyelids to squeeze shut involuntarily and rendered him functionally blind. They gave him a 50/50 chance of it being permanent but fortunately it wasn't. I don't think they should be used for anything but psychosis as such.

I'm so sorry about what your life has been brought to. Have the doctors no insight at all as to what could improve your condition?

I agree with you. Antipsychotics should be reserved for psychosis --- they are highly dangerous. Most Dr's I have seen have been in shock when I tell them I was given a high dose of it for insomnia.

When I was in the psych ward, there was a man screaming and threatening to kill people. They gave him 20 mg of olanzapine and he was knocked out in about 5 minutes. That is when I realized the true power of the brain poison I had taken for 10 months.

The problem with my case is, it is now hard to disentangle what is from the drug-induced Parkinsonism, and what is from my suicide attempt. I believe the nerve pain and loss of feeling in my mouth is from the suicide attempt. The cognitive problems might be too.

I have had several brain and neck scans done at this point. There are abnormalities, but nothing big enough for them to want to do anything. For example, I have a large cyst on my brain. That could be resulting from a brain injury, or that could be there from birth --- it is hard to know for sure. Also, I have a hypoplastic (narrowed) vertebral artery in my neck. I believe more likely that is an injury from the suicide attempt. But it is hard to know, and even if so, what could they do? I'm not sure.

My quality of life is a 0 for sure. Like I said, I pray to God to just kill me at this point. The only conceivable reason I have to live is if I can add anything to my kids lives. And I'm not sure that I can.

 

[SorrowMind]

horrifying story. I'm so sorry. this life can be so cruel…

 

[FuneralCry]

That really is beyond awful what you've been through, it's just so incredibly horrific how life can torture people so much. But anyway I wish you the best.

 

[wish_to_live_again]

Thank you all for the kind words. I try to look at it as I had a good life for 35 years --- I want to be thankful for that. I know many people here haven't even had a handful of happy years.

If I died today, I could be thankful for a life that was 95% good, 5% hell.

 

[WaitingToGo]

Thank you all for the kind words. I try to look at it as I had a good life for 35 years --- I want to be thankful for that. I know many people here haven't even had a handful of happy years.

If I died today, I could be thankful for a life that was 95% good, 5% hell.

I'm so so sorry to read about what happened to you. Can I ask what strength were the Olanzapine tablets you were taking. I've just started taking this and I'm on 2.5mg which I take in the evening for my insomnia. It's been a week since I started on this medication prescribed to me by psychiatrists. what you've gone through is awful and certainly don't want it happening to me too. I wish you the best and hope it gets better for you.

 

[Blackroom_57]

you must have been pretty violent while trying to strangle yourself to have lasting injuries like that. I've tried the same thing but had no lasting problems.

 

[wish_to_live_again]

I'm so so sorry to read about what happened to you. Can I ask what strength were the Olanzapine tablets you were taking. I've just started taking this and I'm on 2.5mg which I take in the evening for my insomnia. It's been a week since I started on this medication prescribed to me by psychiatrists. what you've gone through is awful and certainly don't want it happening to me too. I wish you the best and hope it gets better for you.

I was on a much higher dose to start compared to you --- 20 mg. I titrated down twice, but I could not get off it because of the rebound insomnia. I should have just toughed it out but I didn't know what was going to happen. And my Dr reassured me I could continue on it even at 10 - 20 mg if I needed to.

For you, 2.5 is pretty low. I think it is unlikely to cause you the problems that I had. But still, it is a powerful drug. And I think there are MANY other BETTER and SAFER alternatives for sleep. I would HIGHLY suggest you to get a second opinion from another doctor. Maybe a neurologist or a sleep specialist can help.

In the mean time, pay attention to your body. If you start having weird side effects, it might be a sign you should get off the drug. If you stop this drug, your insomnia might rebound. If that does happen, I would recommend to just stick it out. Eventually things should smooth out. Just try to stay calm. The human body can go a long time with little or even no sleep. I went 1 week with basically no sleep. And went for months on just ~3 hours per night.

you must have been pretty violent while trying to strangle yourself to have lasting injuries like that. I've tried the same thing but had no lasting problems.

Unfortunately yes. I was basically out of my mind at that point. I don't remember feeling pain but I know it was violent, and attempts went on for probably ~2 hours.

 

[WaitingToGo]

Thanks for your reply. The idea is for me to take this for a few weeks then switch me over to a non ssri antidepressant. They said I could take 5mg if I wanted but I'll stay on 2.5mg I think. Only had nausea and headaches the first time I took it but have been more or less ok since and am sleeping a little better.
Hope things turn around for you.

 

[wish_to_live_again]

Thanks for your reply. The idea is for me to take this for a few weeks then switch me over to a non ssri antidepressant. They said I could take 5mg if I wanted but I'll stay on 2.5mg I think. Only had nausea and headaches the first time I took it but have been more or less ok since and am sleeping a little better.
Hope things turn around for you.

I would absolutely advise you to not go up on the dose. And if the plan is to stop it in a few weeks, follow the plan. It is not a drug you want to be on long term for help with sleep. Like I said, there are much BETTER and SAFER options for sleep help.

 

[WaitingToGo]

Yes after what you've been through I definitely agree. To be honest I was shocked when I found out it was an anti psychotic drug. I was like what the hell has this been prescribed for and was actually not even going to pick up the tablets from the pharmacy but was persuaded otherwise. The other day at work I had this real feeling of serenity about my decision to end my life, I felt happy about it but not sure if that was caused by the Olanzapine.
i'm prescribed zolpidem too but they told me not take that as well. There's some over the counter sleeping pills which seem stronger than zolpidem which I prefer called Dormidina which I bought in Spain. Not sure if you can get that where you are

 

[wish_to_live_again]

One thing to be aware: when you stop the Olanzapine, it frequently will cause some changes in mood and thinking. Some people will feel suicidal after stopping it, some have bad insomnia again, etc.

I think since you are on a low dose for a short time, the risk for you is less. But you do already struggle with suicidal thinking...so just want you to be aware. The drug can affect those thoughts, while you are on and/or while you come off. You definitely don't want to let the drug make your decisions!

 

[http-410]

I am sorry to hear about your suffering and can only imagine how terrible the situation must be for you. It makes me angry that such medications as antipsychotics are handled so lightly and are often used for sleep problems, although they have a (in my opinion) great side effect profile. What you describe in terms of long-lasting side effects and difficulties in discontinuing them does not surprise me at all. In any case, you are not alone.

I myself have had only negative experiences with them, which also affected me physically, and would never take them again, especially after I read through some studies on prolonged ingestion. I also did not question anything and trusted the doctors. On the other hand, sleep medications that are primarily made for sleep problems have a risk of dependence. It is difficult to find a suitable way here and it probably takes a good doctor to do that when you have already tried everything possible.

Have you seen a doctor about the drug-induced Parkinsonism? I'm not a doctor, but there are medications for Parkinson's itself, couldn't they help you?

 

[wish_to_live_again]

I am sorry to hear about your suffering and can only imagine how terrible the situation must be for you. It makes me angry that such medications as antipsychotics are handled so lightly and are often used for sleep problems, although they have a (in my opinion) great side effect profile. What you describe in terms of long-lasting side effects and difficulties in discontinuing them does not surprise me at all. In any case, you are not alone.

I myself have had only negative experiences with them, which also affected me physically, and would never take them again, especially after I read through some studies on prolonged ingestion. I also did not question anything and trusted the doctors. On the other hand, sleep medications that are primarily made for sleep problems have a risk of dependence. It is difficult to find a suitable way here and it probably takes a good doctor to do that when you have already tried everything possible.

Have you seen a doctor about the drug-induced Parkinsonism? I'm not a doctor, but there are medications for Parkinson's itself, couldn't they help you?

Thank you for your response. I agree, the antipsychotic usage seems to be taken very lightly by people who will not have to live with the damage! I have zero faith in psychiatrists, although I am sure there are some good ones. Certainly some psych drugs can and do help the appropriate patient. But a truly good Dr will also consider non-drug options too. In my case, probably some melatonin, vaping some marijuana, and maybe a few glasses of wine would have been enough to help me settle my sleep out. At least, it would have been much less harmful.

I have seen a couple neurologists about the DI-parkinsonism. One did offer to treat me with a Parkinson's med. But honestly, my tremors and spasms have become much less than before --- maybe 80-90% reduced now. My main problems now are the nerve pain, numbness (especially in my mouth), and the cognitive issues I am having. So the Dr's are trying to treat those --- although without much success. The fact that I have lost so much feeling in my mouth indicates to me a massive nerve damage in my neck/head. Also, the nerve pain in my face and extremities would suggest nerve issues too. These are things that I do not know whether I can live with them.... :(

 

[anxious_depressive]

Hi

I am so sorry that you are going through such suffering.

I give you a big hug.

 

[Foxes]

Thank you for the kind words. I have now realized the field of psychiatry has many incompetent doctors who are playing with their patients lives. So many people have been damaged or even ruined by a wrong psych drug. So many suicides as well :(

One thought that makes me think there might be a purpose before I die: shine light on the skeletons in the closet for the field of psychiatry. There are so many.

Is there any grounds for legal action? My heart goes out to you. I'm so sorry for what you've been through. I've also had my share of dealing with some really shady practitioners and it makes me wary to want to seek help because of my past experiences.

 

[Zetsubou]

I agree with you. Antipsychotics should be reserved for psychosis --- they are highly dangerous. Most Dr's I have seen have been in shock when I tell them I was given a high dose of it for insomnia.

When I was in the psych ward, there was a man screaming and threatening to kill people. They gave him 20 mg of olanzapine and he was knocked out in about 5 minutes. That is when I realized the true power of the brain poison I had taken for 10 months.

The problem with my case is, it is now hard to disentangle what is from the drug-induced Parkinsonism, and what is from my suicide attempt. I believe the nerve pain and loss of feeling in my mouth is from the suicide attempt. The cognitive problems might be too.

I have had several brain and neck scans done at this point. There are abnormalities, but nothing big enough for them to want to do anything. For example, I have a large cyst on my brain. That could be resulting from a brain injury, or that could be there from birth --- it is hard to know for sure. Also, I have a hypoplastic (narrowed) vertebral artery in my neck. I believe more likely that is an injury from the suicide attempt. But it is hard to know, and even if so, what could they do? I'm not sure.

My quality of life is a 0 for sure. Like I said, I pray to God to just kill me at this point. The only conceivable reason I have to live is if I can add anything to my kids lives. And I'm not sure that I can.

Not that this will help with your ailments, but is it possible to sue the doctor who prescribed you the meds in the first place? I'm not familiar with Olanzapine, but if other doctors were shocked by the high dosage you were prescribed, then I can see this potentially becoming a malpractice case.

EDIT: Someone beat me to this question. But for real, is a lawsuit possible?

 

[wish_to_live_again]

@Zetsubou @losingmyreligion

Thanks for the suggestion. In my non-legal mind, it was malpractice. But I think the law makes it really hard to win such cases against the medical establishment. But maybe a good lawyer who is willing to take on the risk of losing for potentially a high reward would consider the case... If I could win even a moderate settlement, it would make me feel better should I die and leave my kids behind :(

 

[Foxes]

If I could win even a moderate settlement, it would make me feel better should I die and leave my kids behind :(

It could be worth a shot maybe? Also, you sound like a really good father. Makes the whole thing about your wife taking the kids away that much harder to read about. Hope that you're doing okay today.

 

[janejackson]

@Zetsubou @losingmyreligion

Thanks for the suggestion. In my non-legal mind, it was malpractice. But I think the law makes it really hard to win such cases against the medical establishment. But maybe a good lawyer who is willing to take on the risk of losing for potentially a high reward would consider the case... If I could win even a moderate settlement, it would make me feel better should I die and leave my kids behind :(

I'm terribly sorry about your situation. It's bad enough to have the physical ailments, but then to have your wife leave with the kids… How tragic.

I cannot believe that shrink prescribed an antipsychotic for insomnia, period, when there are other classes of drugs meant for insomnia such as the sedative hypnotics, benzodiazepines, and DAOA. For example, when I had insomnia, my shrink tried Ambien and Lunesta (which didn't work) and then Qviviq, which worked like a miracle.

There might possibly be a lawsuit in that she didn't warn you about tardive dyskinesia. When you prescribe antipsychotics, you're supposed to monitor for any signs of involuntary movements.

ETA: The drugs prescribed for sleep can have very serious side effects, too, though, such as new or worsening depression and suicidal ideation.

 

[wish_to_live_again]

@losingmyreligion
I think it's a good idea...I will at least reach out to some lawyers and see what they say...
I was very close to my son. Unfortunately, I never had much time to bond with my daughter because I was already starting to have serious depression from the med when she was born. And then tremor/spasms started when she was only about 6 months old. I did just visit them for 5 days. When I said goodbye, my son asked me not to go, and I broke down and wept.

@janejackson
Thanks for your comments. I agree with you --- in hindsight, it is unbelievable that it was the second drug she tried after Ambien. She lied to me frequently during my treatment. And when I started having twitches and tremors, she tried to tell me it was in my head ("somatoform disorder"). Such psychiatrists should at minimum be barred from practice forever...

 

[Zetsubou]

Thanks for your comments. I agree with you --- in hindsight, it is unbelievable that it was the second drug she tried after Ambien. She lied to me frequently during my treatment. And when I started having twitches and tremors, she tried to tell me it was in my head ("somatoform disorder"). Such psychiatrists should at minimum be barred from practice forever...

She absolutely needs to be sued. There might be other people who were or will be harmed by this quack.

 

[eashanm]

Can relate. My life was also ruined by the doctors (psych) which was forced upon me by my parents.

And I think there are MANY other BETTER and SAFER alternatives for sleep

Do you have any suggestions for me? I also have sleep issues

 

[wish_to_live_again]

Can relate. My life was also ruined by the doctors (psych) which was forced upon me by my parents.


Do you have any suggestions for me? I also have sleep issues

I'm not an MD, but start with the no risk things first. Good sleep hygiene. Sunlight and exercise each day for at least 20-30 min —- more is better. Cool dark room to sleep. Consistent schedule. Maybe a book on tape or podcast (should be somewhat boring) or sound machine to listen to as you drift off. Supplement wise, magnesium at night helps some people, and I am sure there are other vitamins/ minerals that might help too. If you don't sleep well, try not to feel anxious about it as that can become a cycle. You can go on low sleep for a long time, although not fun at all.

Then there are very low risk approaches to try if still need help. Melatonin helps some people but best to only use short term (or cycle on-off is commonly done).

Then comes low-medium risk. Over the counter sleep aids from the pharmacy, or Benadryl. If marijuana is legal where you live, certain kinds are helpful for sleep (vape or chewable). But be careful with this if on prescriptions already—- might interact badly.
I also found a little bit of alcohol could help me wind down and feel drowsy at night (I used to do only 1-2 shots of gin or whiskey in a mixed drink). But alcohol can be dangerously addictive for many people so need to limit yourself. Also many meds say you can't have alcohol, so ask your doctor or pharmacist if you are not sure.

Medium risk — certain prescribed meds. Avoid these if you can. Long term effects highly possible but very unlikely to harm you in short term. I would probably put gabapentin (low dose; 300-600 mg) and seroquel ( low dose; 25 mg or less) and mirtazapine (sorry; forget the dosage) in this category. There are probably a couple other drugs in this category that I'm not familiar with. Again, I would avoid if possible. If you are an old person, it doesn't matter so much.

High risk —- do not recommend. Could be used in a crisis but will affect your brain chemistry, severe side affects, and can be near impossible to get off. These are the benzodiazepines and the hypnotics like Ambien. These can ruin lives. If you need it, try to keep doses low and time on short.

Ultra high risk. High dose antipsychotics. These knock you out but can leave you with twitches, tremors, and all kinds of involuntary movements. Also, make you a zombie. Mine were so bad that I ended up in a psych ward where I tried to kill myself. My brain and body are wrecked at age 37.