Gamma knife meltdown

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Good Morning All,
Last Tuesday, Oct. 14, My family and I traveled to Boston to Tuft;s Medical Center for gamma knife radiation for my newly discovered Brain tumor, its was an amazing procedure, everything went well and we were on our way home the next day. Before we left Boston my Doctor renewed my perscription for Decadron to start the weaning me off it, I had been taking 6mg 4x a day for three weeks while waiting for my treatment date because of brain swelling. Now I would be cut back to 4mg 4x aday, then to 2mg 4x a day and so forth.
I don't know how steroids work for most people but I always thought they made you gain alot of weight and gave you energy, well for the first three weeks on them I lost ten pounds and yes I was still eating normally and much more, and my body slowed way down the gait of a 80 year old.
About Thursday of last week I noticed I just couldn't shut up, seriously my brain would not let me stop talking, it became obsessive, if there was a lull in the conversation my brain made me say something, anything to keep the conversation going, and everything I did was zipped up, my husband and I visited some neighbors to update them on how I was doing and I talked 45 minutes straight, I talked so much I made myself physcially sick and had to go home because I couldn't see straight and I was very dizzy, I mean much more dizzy then normal..LOL!
I ended up at the ER that night, I wrote about that in my last post. This was a warning of what was coming the next day.
I felt fine Saturday morning and went on shopping trip with my sister, Daughter and my younger Brother. Of course I was still the "talkinghead" but it got much worse than that as the day went on..As time went on through the day I became more and more talkative and confused, in my eyes I was acting normal just hyper but my family could see that something was not right at all. I was having trouble connecting my thoughts and then I was having trouble having my thoughts connect with my body, my brain would tell me a needed a drink but I couldn't get my body to respond. Then I'd have to get my daughter to give me something to drink, or anything I needed I had to have it passed to me. Oh it got way worse after that. I think I broke down and cried in front of every salesperson in every store. It was the most frightening day in my life, my family took such good care of me, they stayed right with me constantly, tried very hard to keep me calm until they could get me home and to the hospital, when we finally got home , we went to my Mother's house and they called my Husband, and the Ambulance, I live in a two horse town and it takes our local Ambulance a good 30 minutes to arrive, well in the meantime my brain was screaming that I needed food, but the paramedics told my family not to feed me, and the longer it was taking for me to get food the more angry and violent I was getting, yes I'm sorry to say I became very violent with my dear husband, I never swear or hit anyone but I did both to him, I said horrible things to him and slapped him and punched him, just because he wouldn't feed me. I was totally out of my mind by then. I know this is scary but I feel I need to warn you about what happened to me so you can be aware what to be looking for if you go through extensive radiation, and I'm wondering that with me maybe I had some kind of allergic reaction to the Decadron, or my dosage was just too high for me the first place.

Has anyone gone through this kind of mental breakdown before? By the way I spend 6 hours in the ER and the ER Doctor's opinion was it wasn't anything to do with my brain, I was just depressed and needed to communicate with my family more...can anyone say "Quack" I couldn't leave until I'd seen a crisis worker. To set up family counseling.... I'm sorry this is so long..I'll anxious to hear your your responses.

Have a good day!
Tina

5 replies

Steroid induced psychotic episode.

I'm sorry the steroids affected you so severely but, your description is so vivid and facinating.

My wife said I was a real lunatic at times while on high-dose decadron. OTOH, I can be a lunatic w/o decadron.

G

hey, Tina,
you poor, poor dear!!!
have you talked with your onc and your radiation onc? I think they need to hear your story - ER docs aren't always well equipped to handle chemo patients....
I sure hope you get to feeling more like yourself!
many hugs
Pat

Wow that's quite a story. I'm glad you worte about it as a head's up!
Huggs
Julie

Tina, I am so sorry you are going through this. Your warm, sweet personality comes through in all your posts so when you describe this, it is really hard to imagine you this way.

I apparently did all kinds of things when I was in the ICU that my poor husband tried to keep me from knowing I did. I never take drugs and they had me on general and spinal anesthesia and pain med and my electrolytes were completely off. I guess they will remember me for a long time!

There are so many things in play for you. I hope they drew blood on you in the hospital and that the people who did the gamma knife were made aware of this happening. I mean there's meds, the procedure, the inhuman stress of it all and electrolytes all working here.

How you ( or any of us facing this disease) don't lose our minds from the get-go is a mystery to me. You have been through incredible stress in the past 2 weeks both physically and emotionally so I don't think it is surprising that you are "melting down". Hopefully you will be able to just slow down and rest and the doctors can figure out what thing or combination of things is causing this.

Just know that I am praying that things will settle down and get back to "normal" for you - like NOW!

Big Hug

Tina,
I am just now reading about your meltdown.... I too have a horrible reaction to steroids. I am usually a pretty easy to get a long with person, but when I am on steroids, even after just a day or two, I become Attila the Hun!!! I scream at my husband, and have even locked him out of the house! It is so bad that during chemo I requested (and was given) a lower dose of steroid than recommended. And I did not take the steroids for the 3 days following chemo as prescribed. I know that it meant nausea for me, but I would rather throw up all day than have my personality completely change. I hope you are off, or almost off the steroids now. I know how they can be, and if it were not absolutely necessary, I would never take them again!!

Erin

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