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Ativan, anxiety and a seriously damaged CNS

Liv's story

I wanted to share my story in the hopes that it may help others. I'll try to keep it as short as possible.

I never had a predisposition for anxiety. Quite the opposite; growing up I could be described as independent, confident, outgoing, out spoken, adventurous and popular. I had the lead role in the school play and was a cheerleader.  When I was in kindergarten we moved into a new house and I asked my mother if I could go knock on doors and make new friends. I never had a nervous moment in my life. I felt excitement before a performance or a game or a class presentation but never nervous.

In 1996 I was in college and out with friends. I used a rec. drug called ecstasy and had a very bad reaction. I had a full seizure...my friends described it as me flopping around like a fish out of water. No one took me to the hospital because young people are often stupid...clearly we were or we would not have done this drug in the first place. I didn't know what was wrong with me but knew that something had gone really wrong and feared I would be stuck like that for the rest of my life. I was scarred to death and told my boyfriend that I felt like I was on 10 hits of LSD and it would not go away. He said to wait and he was sure it would go away. That was in July and the chemical anxiety got so bad I could not leave the house...I tried to wait it out but when my college classes resumed in late August I tried to go to one and couldn't do it. My whole body shook and my neck twitched all day...I had throat ticks and felt like I was choking...the depersonalization and derealization was so strong and so constant I was sure I was going crazy. I cried everyday all day long.

My boyfriend took me to the ER and they ran every test they could run looking for brain tumors, heart problems, head to toe check…everything came back ok.  I told them I was dizzy, felt like I was on a boat, heart palpitations, headaches, anxiety…I can’t remember what else but it was a long list.  The doctors finally said I think you have an anxiety disorder and need to see the psychiatrist. I knew better…I was the kid who liked speech class…anxiety? Me? No way. I knew it was the drugs that something had gone wrong and I was afraid that I was going to be stuck that way forever.

So I gave it another few weeks and had no improvement. I called the psychiatrist to see what they had to offer. My boyfriend said “you are really going to the shrink” I said…”I can’t stay like this”. I was house bound at that point and hated it when he left me alone for even a few hours.

When I went to the psychiatrist, he saw how bad I shook and said “does your neck always tick like that”  “ I said “yes”…he asked me a bunch of questions and finally prescribed me Prozac and Ativan. I took both and hoped for the best…I only had a small amount of Ativan and as it stopped the ticking and shaking somewhat I used them sparingly to get through the day while my boyfriend was at work. When they were gone they were gone and then my symptoms got so much worse…the chemical anxiety got so bad I spent all day with the covers pulled over my head because I was scarred to open my eyes and see the world. I didn’t know what was wrong and I was pretty sure that it was permanent…I cried all day everyday and the one thing I did know was that drugs were to blame and that I would never take another again. I was in that state for about a year…after a year the Prozac didn’t seem to help or hinder so I tossed it..I remember nothing changing when I ditched the Prozac for worse or better. During the second year I was still suffering dizzy spells all day and derealization and depersonalization as well as anxiety but it was getting less severe. I could leave the house for short periods if I was with my boyfriend. Halfway through the second year I signed up for a class and forced myself to go…it was very hard to sit through the class, but that was my goal, to go every time and stay the whole class. During the third year things got so much better. I started getting very large windows and started to feel normal. I returned to college full time that year and while I was still having a hard time with anxiety I did fine and finished my degree.  I interviewed and got a job that year as well.  And by the end of the third year I was feeling like my old self…I had healed.

I never knew what went wrong and never knew the Ativan was why I got so much worse. What I did know is that for some reason I could no longer drink alcohol, caffeine, take any meds or even vitamins. I remember drinking a protein shake with supplements in it and the same old “weird” feeling returning.  My boyfriend said I had become a hypochondriac…at the time I thought he was probably right. 
In five years I never even thought about or talked about that period in my life…it was gone…I could even have a glass of wine or beer when I went on a date or out with friends…still no caffeine…but I felt great.  I was exercising regularly again…working full time…coaching…working on a graduate degree at night…dating…living alone…going on vacations…flying…hiking in the mountains…I was living a happy normal life.

Fast forward to 2008.  I had a baby and things went really wrong…well first off I tried to take my prenatal vitamins and they wigged me out…I told my doctor I thought I was allergic to them and I really thought I was…I had preaclampsia and hemorrhaged when I gave birth.  I almost bled to death and had a blood transfusion. The whole thing was a big mess…to make a long story short..… I had NO iron after the bleed and was in extreme pain waiting for a iron infusions. The doctors had given me Vicodin and I didn’t want to take it because I knew I did not do well with meds…I tried one and it made me feel like I was on drugs so I refused to take another. The pain was so bad and I would be up all night crying and I had a new baby so no one was sleeping and my family was at the end of their ropes with me and the doctor had given me Ativan. One night in the middle of the night my family members were screaming at me to take one…they basically forced me to take it…they brought me water and as I laid there sobbing they forced me to take it. Well it worked, and so I took one every night during my iron infusions because I didn’t want my family to be mad at me or stop giving me the help I desperately needed being so sick with a new born.

When the 4 week cycle of iron infusions were complete I stopped taking the .5 of Ativan and things went crazy…the irony of it all…I was right back to where I was 13 years before and it all clicked…the ativan…I started googling and reading and found TRAP. They answered my questions and I listened to every word. I was so scarred that I was going to spend three long years messed up again. I knew how bad this could be if I did not listen and when TRAP said they could help I cried and thanked God. I think I mentioned the previous cold turkey one time and a moderator told me that previous cold turkey could make w/d harder…so I never mentioned it again because I could not hear that as it scarred me too much.
I tapered from Valium and I was much more physically ill this w/d then the last time my CNS was a mess…mentally it was worse the first time. I am so glad I found TRAP because they saved my life.  They got me off and now I am 6 weeks off and feeling fine.

The irony of my story is unreal to me. This was so horrible but the one thing it brought me us understanding about what happened to me when I was young. I was reading the Ashton Manual and symptoms and reading about the CNS and I would just shout out “YES! YES! YES!” because it was everything that had happened to me already. It helped me this time through to know that I would heal…I never doubted that because I had before…I just did not know how long it would take…I just kept telling myself…”worse case scenario is three years…I’ll make it”  The good thing is now I understand my body and know that I am not crazy or a hypochondriac. I am living with a seriously damaged CNS and because of that there are things I need to avoid to take care of myself. I will never let anyone tell me what to put into my body ever again…I feel stronger from having gone through this and I am eternally grateful to all the friends and staff I have at TRAP. You were all there for me when know one else was…you understood, you educated me, you supported me and you saved me. Thank You! Liv

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