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ECT's now VNS

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Posted 7/8/2006 2:41 AM (GMT 0)
Hello,

Back in October I started having ECT's after being hospitalized in short and long term hosp. over 20 time's since 2002. At first they were fine but then I started waking up while I was still paralyzed and they were breathing for me. Of course they didn't belive me so I stopped going untill recently after my last episode my familly is "making" me go.(not legally, I'm 23, but I live with them so I really don't have a choice) Before I stopped I hade about 18 or so and this time around I've had 5 so far, andd 3 of the times I woke up. Of course, they didn't belive me untill I told them what they were saying while I was supossally uncounciouse. So the first two time they said "we're tweeking it" and after the last time when a was able to move the hand that they put the cuff on so they don't paralyze it, I was able to make it move alot this time and I gouged a nurse's hand with my nail-WHILE MY DIAPHRAM WAS STILL PARALIZED!!!! And after I woke up and they realized I was very aware of it when I apologized for scratching her, they said, "Well, we'll try something new next time." My family acts like it's no big deal, b ut they don't know what it's like to not be able to breath or move like that and to wait for what seems like an eternity for her to push another breath of air into your lungs. They get angery afterwards when I cry! A while ago my doctor applied me for the VNS surgery and I filled out the form. But it said on it that they would not take people with schizphernia or schizoaffective dissorder, but I'm diagnosed as schizoafffective and they called me yesterday to take all of my info. I told him my diagnosis and he was mainly worried about Medicare being my primary. He said I may have to appeal to Medicare to have it paid for. I'm a little worried about the side affects, but to me it's worth not having to wake up during ECT. I've also been having a lot of memory problems that I know are common with ECT, but alot of the thing's I've forgotten happened about a year ago or so. I had my birthday the other day and my mother and I was talking about the year before. I thought I had my birthday in a state hospital, butt she said no, that they let me come home a few days and she was telling me about the big themed party they had for me and a big fireworks show we went to, and I don't remember any of it. Has this happened to anyone else? Or has anyone woke up during an ECT or have had the VNS surgery? I look forward to hearing from any of you. Thanks!! tongue

Posted 7/8/2006 11:46 AM (GMT 0)
clever, can I ask why they are doing ECT on you?  I see that you posted you have Schizoaffective disorder, do you have active symptoms from that?  I was wondering if you have ever tried a medication called Clozaril?  It is a wonder drug for many people who have this type of disorder and can give them back their lives.  Of course it comes with some down sides as it is hard on the liver and can lower your white blood cells so they have to do weekly CBC's until the doctors are sure that your stable on it then they can move the CBC's up to every other week then once a month. As for the VNS, it is my understanding that it isnt effective for schizoaffective, schizophrenia, and rapid cycling bipolar disorder.  Of course, I'm not a physician so.... VNSandTRD/clinicalstudy.aspx">http://www.vnstherapy.com/depression/hcp/about VNSandTRD/clinicalstudy.aspx
Posted 7/8/2006 11:40 PM (GMT 0)
I was on clozaril when I was in a state hosp. I gained over 50pnds. in two months and I was having all kinds of twitches and stuff. sad

I've always have had sever depression. Personally I belive that the depression brings on some of the psycosis. I've had the MMPI and the Warkshaw (sp?) done about four times in three years. Everywhere I go they disagree with my diagnosis but they keep it the same. I go through different cycles where I'll hear and smell things, then I'll be really paranoid, or I'll think things that can't be true but all the while I'll be depressed. I'm currently trying to be placed back into a home. The last few weeks I have spells where I don't know if I'm asleep or if I'm really doing things that I think I'm doing. I'll remember going places and having conversations that didn't happen. But what really scared me is that I thought I killed my parents when they were sleepin and turned on the kitchen gas and layed back down. I told my doctor but he didn't really care about it. He said he was glad that I was communicating well. On the 4th I thought my sister was sitting on my bed and we were talking and I showed her my new tattoo I got a few days before and I saw that it was bruising and I told her that thatwas weird, I've never had one do that. Well later on after I got out of bed I figured out that she couldn't of been there, she does not live with us, and I took a shower and I saw that in fact my arm WAS bruising. I don't think I've ever had a hallucination where I saw stuff, but my doc didn't think anything of it. A long time before I ever really got sick I would late at night wake up and my friends were in my room and I would talk to them and later on I would figure it was a dream. But later that day I would see that I drank the bottle of water that I thought I was drinking when I talked to them. It's wierd I guess. tongue

Posted 7/9/2006 11:00 AM (GMT 0)
I'm sorry that the Clozaril didn’t work for you...I have seen lots of people get better on that medication.  It does sound as if you’re going through so much.       Hallucinations can be tricky and different for everyone who experiences them.  But most people who have had them do describe them as seeming like it was a dream or it had a dream like quality to it.  What kind of home are you trying to go to?  Is it a Residential Care Facility that specializes in mental health care? 
Posted 7/9/2006 7:20 PM (GMT 0)
Yes, it's a house for women with mental illness. It only takes 7 women, and every day you go to out-patient day treatment from about 9-2pm. I lived there for a few months, but had a bad episode and ended up hurting myself and I left. I'm a little afraid they won't take me back, but I talked to a lady that works there and it sounded like I have a chance. The only other idea I have is long term. I hate the idea, but I'm afraid I'll hurt my family. The thoughts and "dreams" are getting worse. I don't know why I've never had syptoms like these, it's really freaking me out. sad

Hopefully tomarrow I'll hear from the VNS people.

Thanks! tongue

Hi clever,  I'm sorry but I had to edit one part of your post due to it being a little graphic.  - Thanks Elisha

Post Edited By Moderator (els) : 7/10/2006 10:11:33 AM (GMT-6)

Posted 7/10/2006 4:26 PM (GMT 0)
Hi clever, Depending on what state you live in there are many residential care programs that can help.  The Department of Mental Health should be able to assist you and your family in finding a suitable living arrangement that also will have the support services that you will need.  Such as access to Psychiatrists, counseling and independent living assistance that will help you to reach a goal of being able to get an apartment on your own, if that is what you want to do.  Your dealing with a very difficult disorder, that often times is hard to find a good combination of medications that will work effectively.  I know sometimes the thoughts seems so real, but you have to keep telling yourself that they aren’t and don’t act on them.  I hope your doctors can find something that works for you soon.  Hang in there.  Were here for you....
Posted 7/13/2006 7:35 AM (GMT 0)
I don't think VNS is approved for your type of illness. Its only been studied for treatment resistent depresstion, which is it succefull for. I really do hope you find help, peace and rest. God bless you. I'm going to speak so someone this week about a VNS study, I really hope to get in.
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