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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by GeishaGirl on December 3, 2004, at 10:18:15
Hi,
I'm wondering if anyone else out there has brain damage as a result of using antipsychotics and/ or other meds. By that I mean not only memory loss, but loss in cognitive functions (like in learning things or putting thoughts into words, etc.)
Unfortunately, this has happened to me and I would love to get some support around this. It's an incredibly painful thing to deal with emotionally and also finding ways to technically cope with the malfunctioning of my new brain is difficult.
Thanx,
Geisha Girl
Posted by lostforwards on December 3, 2004, at 10:54:42
In reply to Anyone else have Brain Damage?, posted by GeishaGirl on December 3, 2004, at 10:18:15
Yes. At least it seems that way. The fact that when I'm taking a piss my left leg becomes very flexible and weak at the knee and if i turn around and look in the mirror soon after my right eye-brow is twitching isn't a good sign.
Also, my left arm isn't swinging. I get dystonia sometimes, but it's almost like it's slowed down dystonia. My head just feels like turning to the left or right and then slowly moving back. I get quicker jerks, like my head throwing itself back or twitching ever so slightly ....usually when I'm reading or using the computer, anything that requires a lot of thought. There's also my sterotypies, the tendancy to pick at my clothes unconsciously. Strange. I have seen a site that acknoledges the existance of tardive sterotypies.I think the leg weakness thing is a bit harder to proove. Maybe if it were bad enought to land me in a wheel chair....I didn't hit my god damn knee anywhere.
The fact that these are non-standard side-effects makes things worse.
As far as cognitive side-effects are concerned. I get very hazey sometimes. Like my mind goes totally blank. I never had this before. I also forget what I'm doing sometimes.
Since my tongue isn't going nuts and my face isn't twitching like mad this is all ignored though.
Oh well. #$@#%@#@!!
There should defintely be more research into these side-effects and better ways of diagnosing them.
Posted by 64bowtie on December 3, 2004, at 14:54:45
In reply to Anyone else have Brain Damage?, posted by GeishaGirl on December 3, 2004, at 10:18:15
Giesha,
This can be troubling for sure... You take stuff to help and it leaves a permanent (mental/emotional) condition... I'm sad for you...
When I was 19 and on my way to Sub-School in the US Navy this "brain-dead" dentist, a "full-bird" Navy Captain by the way, suggested I have all my impacted wisdom teeth out before I went to Sub-School. He took two out at a time, diagonally, with surgery.
The pain was mind numbing, and the infections were even worse. So he prescribed Darvon-65 and antibiotics. From these episodes, I was left with terrible migraines and a milk allergy. I would goto breakfast and within an hour, I had a splitting migraine and terribly messy nausea (upchucking uncontrollably). I swear the situataion might have shortened my life. At the time, no one knew how to help me except 10 grain compozine shots for the nausea. Whoopee... That was fun while it lasted...
Stangely, life on the submarine was OK. No milk and the oxygen bleed produced 5% oxygen richer air to breathe. However, even though exercise and harnessing the milk allergy with lactobascillus cultures, I still freeze up when I talk sometimes. It wasn't healthy to freeze up anytime while talking on the submarine. They would have eventually thrown my *ss off the boat. Somehow I faked it I guess.
I still dread that lingering feeling of uncertainty at what I might say.
Rod
Posted by alexandra_k on December 3, 2004, at 19:09:32
In reply to Anyone else have Brain Damage?, posted by GeishaGirl on December 3, 2004, at 10:18:15
I guess that the really hard thing to establish is whether you would have those things if you hadn't had the medication. I mean maybe they would be worse without the medication you had been prescribed. Maybe they are the symptoms of the mental illness rather than the treatment of it.
That being said anytime I have trouble understanding what someone is saying or anytime I have trouble expressing myself I put it down to the bilateral ECT I had...
I dunno.
Posted by GeishaGirl on December 5, 2004, at 11:51:38
In reply to Re: Anyone else have Brain Damage? » GeishaGirl, posted by lostforwards on December 3, 2004, at 10:54:42
I'm really sorry about what you are going thru. I had tardive dykinesia for awhile, thankfully it went away when I tapered off antipsychotics. From what I've been reading lately, tardive dystonia and dyskinesia a lot of times go hand in hand with congnitive difficulties (covering, it seems a wide range of things from memory loss to ability to process information).
> The fact that these are non-standard side-effects makes things worse.
Yup. Some people I've encountered (friends as well as docs and therapists) were trying to tell me that they never heard of some of the side effects I was having from my meds. However, as I began talking with more and more people, I found that there were others who had similar experiences.
I believe that just because a side effect isn't listed or considered "common" doesn't mean that it doesn't happen. I've read thru very carefully pharmaceutical company inserts and found that there were side effects buried deep within the rest of the document and not listed in the general list of side effects. Why this is the case, I'm not certain of. Maybe the company doesn't feel there's strong enough evidence to put those side effects on the regular list, or maybe they don't want people to panic. I've some of the side effects that weren't on the primary list. There are also side effects that seem to me quite common that aren't listed at all in the inserts or elsewhere.
> As far as cognitive side-effects are concerned. I get very hazey sometimes. Like my mind goes totally blank. I never had this before. I also forget what I'm doing sometimes.
I also have this most of the time. Somtimes when I'm typing emails (even to friends) I forget what I've written two seconds ago and have to reread what I wrote.
I also have problems with understanding things that are in sequence. I'll be having a conversation with someone and they're telling me a story of something that they did or something that happened to them and I get completely lost. I'm confused as to what order things happened in. I can no longer receive even simple verbal instructions. I need to either have the person repeat what they are asking me to do several times or I need to have things written down so that I can understand it.
I also have problems like I'll have a word or idea or sentence in my head and I can't verbalize what's in my head. It's like I can't make a connection between thoughts and speech.
I also have a really hard time understanding complex ideas. I never had any of these problems before I took meds or even when I first started taking them. Most of the time people think I'm not paying attention, when I really am. This is hard. All the people I know right now didn't know me before I was on meds or even within the first year I was on them. To them I seem smart and with it. They have no idea what my functioning was like before. I can't seem to get them to hear me. They seem to prefer to believe instead that it's some kind of flaw in my character.
There's more, but I can't remember right now :) I hope that this makes sense.
> There should defintely be more research into these side-effects and better ways of diagnosing them.
There is quite a bit of research that has been done on various side effects. Many get buried, not because of any kind of methodilogical flaw, but because they are not funded in any way by the pharmaceutical industry and/ or don't have very nice things to say regarding side effects. Many universities get some pharmaceutical funding or are somehow influenced by the industry. I feel that this can taint not only results, but methods.
I find studies interesting things to read and sometimes helpful, but the primary way that I find answers to my questions is by talking with people about their experiences. Even though this isn't a very scientific way, I find it accurate for me. I'll try to find some links to some of the reading I've done online. Can't remember them right now.
I've read books and googled around a lot. Someone I find helpful to read is Peter Breggin. He has a website with some articles and has also written several books. Breggin is a pychiatrist who has some serious problems with psychiarty as it is practiced.
Hope things improve for you. Hope to hear from you again. I'll write about some more stuff when I can. It's hard to write about (both mechanically and emotinally).
Geisha Girl
Posted by GeishaGirl on December 5, 2004, at 12:08:32
In reply to a million years ago » GeishaGirl, posted by 64bowtie on December 3, 2004, at 14:54:45
Rod,
I'm sorry to hear about what you have been and are going thru. The kinda stuff that we're talking about can happen with all sorts of meds, not just ones considered psych meds.
It's seems to me that it's so hard for people to understand that sometimes things I say or misunderstand aren't seen for what they are (a physical inability or disability). I get the feeling that it's such a horrible thing for people to imagine (that meds can do this, especially if they or someone they know has or is taking them) that they prefer to think of it as you as being a jerk. Sometimes, I really feel like I'm stupid or will say something stupid or totally inappropriate. I keep trying to tell myself that it's not my fault. Sometimes this works, sometimes it doesn't. I feel that I am getting better at convinving myself as I keep saying this to myself.
I've written in some more detail what my experience is like in my previous post to lostforwards (do I have the right name? hummm... I hope so). I hope that things get better for you. Hope to hear from you again.
Geisha Girl
> Giesha,
>
> This can be troubling for sure... You take stuff to help and it leaves a permanent (mental/emotional) condition... I'm sad for you...
>
> When I was 19 and on my way to Sub-School in the US Navy this "brain-dead" dentist, a "full-bird" Navy Captain by the way, suggested I have all my impacted wisdom teeth out before I went to Sub-School. He took two out at a time, diagonally, with surgery.
>
> The pain was mind numbing, and the infections were even worse. So he prescribed Darvon-65 and antibiotics. From these episodes, I was left with terrible migraines and a milk allergy. I would goto breakfast and within an hour, I had a splitting migraine and terribly messy nausea (upchucking uncontrollably). I swear the situataion might have shortened my life. At the time, no one knew how to help me except 10 grain compozine shots for the nausea. Whoopee... That was fun while it lasted...
>
> Stangely, life on the submarine was OK. No milk and the oxygen bleed produced 5% oxygen richer air to breathe. However, even though exercise and harnessing the milk allergy with lactobascillus cultures, I still freeze up when I talk sometimes. It wasn't healthy to freeze up anytime while talking on the submarine. They would have eventually thrown my *ss off the boat. Somehow I faked it I guess.
>
> I still dread that lingering feeling of uncertainty at what I might say.
>
> Rod
Posted by GeishaGirl on December 5, 2004, at 12:25:27
In reply to Re: Anyone else have Brain Damage? » GeishaGirl, posted by alexandra_k on December 3, 2004, at 19:09:32
Hi alexandra,
> I guess that the really hard thing to establish is whether you would have those things if you hadn't had the medication. I mean maybe they would be worse without the medication you had been prescribed. Maybe they are the symptoms of the mental illness rather than the treatment of it.
> That being said anytime I have trouble understanding what someone is saying or anytime I have trouble expressing myself I put it down to the bilateral ECT I had...
>
> I dunno.To me, that really depends on how one defines what is called 'mental illness'. For some, it is a chemical imbalance in the brain. The way I and many others see it, 'mental illness' is not a physical illness, but a reaction to trauma and/ or a spiritual crisis. In this line of thought, things that are seen as sypmtoms are actually side effects from meds. Others may be ways of coping in difficult times and go away when a person is feeling more balanced. My own experience with my brain hasn't gotten any better, with the exception of certain memory fucntions returning.
I would like to hear more about what you have to say regarding your feeling on what 'mental illness' means to you. I feel like this is an issue in the mental health communinty that goes too often unspoken. I think that a major problem in talking about all of this is that people are so angry about things that it ends up exploding into fighting and divisiveness. I hate seeing that happen. My way is an open and non-threatening, non-accusing style of dialogue. For me, that is the only way for me to process and think about what's going on in life and the world in general and allow me to either change my concepts and beliefs or find that what I feel still resonates with me.
Hope to hear from you.
Geisha Girl
Posted by Susan47 on December 5, 2004, at 12:39:53
In reply to Re: Anyone else have Brain Damage? » alexandra_k, posted by GeishaGirl on December 5, 2004, at 12:25:27
Because these boards (social and psychology) are where I posted in the summer and I can't bring myself to re-read through that; however, I know I'm saner now; and I've been off Prozac 60mg daily since probably October. Still having terrible brain shakes, at times, and left with a legacy of panic attacks, but much MUCH less than I was having in February, March, April, at the height of my Prozac addiction. 'Zac was good, though, before I became an experiment.
Posted by alexandra_k on December 8, 2004, at 21:15:02
In reply to Re: Anyone else have Brain Damage? » alexandra_k, posted by GeishaGirl on December 5, 2004, at 12:25:27
Hmm. Well I guess I pretty much go with the DSM view of mental illness. Not because it is the word of god, or because it hits upon the ultimate truth, but because after loads of research, despite its imperfections, it is the best we've got.
I mean sure, some mental illnesses are the result of chemical imbablances in the brain (and the evidence for this is that if you can rectify the imbalance, then the mental illness ceases). But that is not to rule out 'a reaction to trauma and/ or a spiritual crisis' being the cause of the chemical imbalance in the brain.
It is hard to establish whether some symptoms are caused by medication or not. It may be that that symptom would have popped up in that person whether or not they took their medication. It may be that the medication prevents them having that symptom much worse. It is hard to know whether symptoms are side-affects from meds, or whether they would have occured regardless. I read some Christopher Frith a while back "The Cognitive Neuro-Psychology of Schizophrenia" and he considered that some of the symptoms of tardive dyskinesia (such as motor and verbal difficulties) might actually occur as part of the negative symptomology of schizophrenia and might not be the direct result of anti-psychotic medications after all.
>Others may be ways of coping in difficult times and go away when a person is feeling more balanced.
Sure, but then I guess 'feeling more balanced' is getting better (sort of...well depending on their condition I guess). Some people may need medication for a little while, or even a long while to help them be able to feel more balanced. I do not think that psychiatry is an exact science, though. We do not know enough about how talking (e.g., therapy) alters neural connections, and how positive experiences can alter neural connections, and we do not know enough about how altered neural connections may 'balance out' neuromodulation...
Posted by lostforwards on December 9, 2004, at 13:23:42
In reply to Re: Anyone else have Brain Damage? » lostforwards, posted by GeishaGirl on December 5, 2004, at 11:51:38
I just wanted to thank you for the reply. I don't know what to say other than I've had some of the cognitive symptoms you mentioned. Things may get better with time. I don't know how long it'll take for you. I've found some of mine have improved in the last few months.
( I'll write you more later if I can think of anything too )
take care.
Posted by bimini on December 10, 2004, at 11:08:35
In reply to Anyone else have Brain Damage?, posted by GeishaGirl on December 3, 2004, at 10:18:15
I am taking antipsychotics as a result of brain damage. I might be taking coals to Newcastle or trying to put out a fire with gasoline.
This is the end of the thread.
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