cduval04
11-10-2009, 03:30 PM
Hi, My name is Caroline. I have been a member of this forum for a while (I should post more often), but am not a newcomer to OCD, I got the Tourette's, OCD, ADD package 17 years ago when I was 6 years old. I am just going to skip to now b/c I could litterally write for days about my stories and experiences, but I don't want to more you or give myself tendonitis :)
So I had really bad OCD from dx into my teen years, while exploring plenty of meds (haldol, orap, depakote, klonopin, clonidine, wellbutrin, risperidone etc...) some of these meds were prescribed to treat the tourette symptoms, but may have also helped the OCD. (they kind of overlap somewhat) I have been on Fluvoxamine for the last 10years? and that entire time my OCD has been under EXTREMELY good control-almost absent..I finally found the right drug after all those years.
In the past few years, my body has been through a lot of changes, and I feel as if the OCD symptoms are (slowly) returning, and I want to nip them in the bud b4 it turns into full blown ocd again....I remember how awful those thoughts/compulsions were in my childhood, it was almost worse than having the tics because it was phsycolgical and messed with my brain and my thoughts and made me feel like I was crazy and I should be able to control this whereas the tics were more physcial and I knew my body could not contorl them. I would never wish either of them on anyone, but (theoretically) if I were given a choice of one or the other, I would definitely chosse the TS.
That said I had Deep Brain Stimulation surgery for the Tourette's (still experimental) and it has been a godsend that I could never repay my neuro team for. Becuase of the surgery to cut most of my tourettes meds out of my regimen. The most recent one I stopped (about 6 weeks ago) is the risperidone. before surgery I was on a hefty dose (2.5mg 2x/day) and since 07 I have been on 1/2-3/4mg 2x/day. But then 6 weeks ago I stopped it altogether and havent needed to restart it.
I have also gained a large amount of weight since surgery (dont know the exact cause, am working with neuro and endo team). I have some other issues that are being explored (pit.tumor, thyroid issues, DBS effects). My weight has fluctuated all my life, but I hit my high of 288 at age 17 then got way down to 215 at age 20 and am now at my largest ever at 300lbs (I am 5' 10.5")
so my question is what are your thoughts on why the luvox may not be as effective anymore. I know you guys arent doctors, but I like to hear from real people like me who share some issues who wont give me BS, plus I have gotten more help on forums in the last year than any doctor has given me. (I know thats sad, but thats our F'ed up medical system).
So I have 3 major theories...1 is I have just become resistant to Fluvoxamine, after having taken it for 10 years (I know that can happen, that is why I ended up getting the brain surgery) 2 is my body weight has increased significantly and I am almost 20lbs heavier than my heaviest weight on the Fluvoxamine, and probably an average of about 60lbs heavier than I was for most of the 10 years that I have been taking it. So maybe just becuase I weigh so much more I need to increase the dose? I know medication os often based on weight. The bigger you are, the more you need to be effective..makes sense...my other theory is that the cessation of the risperidone may making my OCD worse. Although I was on it for the tourettes it was probably contributing to helping the OCD symptoms, as it is also used for OCD.
so I would like to hear some peoples opinions, and maybe if you have had the same issue before with a med not working as well anymore, did you figure out why? thanks, sorry for the longish post, but as my neurologist says "I am a puzzle" :p
So I had really bad OCD from dx into my teen years, while exploring plenty of meds (haldol, orap, depakote, klonopin, clonidine, wellbutrin, risperidone etc...) some of these meds were prescribed to treat the tourette symptoms, but may have also helped the OCD. (they kind of overlap somewhat) I have been on Fluvoxamine for the last 10years? and that entire time my OCD has been under EXTREMELY good control-almost absent..I finally found the right drug after all those years.
In the past few years, my body has been through a lot of changes, and I feel as if the OCD symptoms are (slowly) returning, and I want to nip them in the bud b4 it turns into full blown ocd again....I remember how awful those thoughts/compulsions were in my childhood, it was almost worse than having the tics because it was phsycolgical and messed with my brain and my thoughts and made me feel like I was crazy and I should be able to control this whereas the tics were more physcial and I knew my body could not contorl them. I would never wish either of them on anyone, but (theoretically) if I were given a choice of one or the other, I would definitely chosse the TS.
That said I had Deep Brain Stimulation surgery for the Tourette's (still experimental) and it has been a godsend that I could never repay my neuro team for. Becuase of the surgery to cut most of my tourettes meds out of my regimen. The most recent one I stopped (about 6 weeks ago) is the risperidone. before surgery I was on a hefty dose (2.5mg 2x/day) and since 07 I have been on 1/2-3/4mg 2x/day. But then 6 weeks ago I stopped it altogether and havent needed to restart it.
I have also gained a large amount of weight since surgery (dont know the exact cause, am working with neuro and endo team). I have some other issues that are being explored (pit.tumor, thyroid issues, DBS effects). My weight has fluctuated all my life, but I hit my high of 288 at age 17 then got way down to 215 at age 20 and am now at my largest ever at 300lbs (I am 5' 10.5")
so my question is what are your thoughts on why the luvox may not be as effective anymore. I know you guys arent doctors, but I like to hear from real people like me who share some issues who wont give me BS, plus I have gotten more help on forums in the last year than any doctor has given me. (I know thats sad, but thats our F'ed up medical system).
So I have 3 major theories...1 is I have just become resistant to Fluvoxamine, after having taken it for 10 years (I know that can happen, that is why I ended up getting the brain surgery) 2 is my body weight has increased significantly and I am almost 20lbs heavier than my heaviest weight on the Fluvoxamine, and probably an average of about 60lbs heavier than I was for most of the 10 years that I have been taking it. So maybe just becuase I weigh so much more I need to increase the dose? I know medication os often based on weight. The bigger you are, the more you need to be effective..makes sense...my other theory is that the cessation of the risperidone may making my OCD worse. Although I was on it for the tourettes it was probably contributing to helping the OCD symptoms, as it is also used for OCD.
so I would like to hear some peoples opinions, and maybe if you have had the same issue before with a med not working as well anymore, did you figure out why? thanks, sorry for the longish post, but as my neurologist says "I am a puzzle" :p