A personal experience...

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Posted by Francois ( on February 01, 2000 at 23:11:09:

I have had chronic CHs since age 11. I am now 46. Without nortriptyline, lithium carbonate, & nefazodone daily with Imitrex and Tylenol #4 (codeine) as needed, I am not functional. In addition to "a beast on a full-time rampage" in my head, other things occur, i.e. blindness in my left eye, or hearing loss in my left ear, or inability to speak words (I just make garbled sounds).

You need this background for my tale...

In July 1999, I was at work far from home. At 5:00 p.m. on a Friday, one of the most completely overwhelming and devastating pain crises that I've had hit. I became physically very weak, but I was lucid. My drugs were in a hotel room 45 minutes away. A co-worker rushed me to the nearest hospital emergency room and dropped me off. At the receptionist's desk, I could only make garbled sounds and tears were streaming from my eyes from the pain (but I wasn't sobbing.) My was face was contorted and I probably looked desperate. I slowly scrawled a note to her about my pain crisis. Guess what happened next??

First, nothing for an hour. Then I was told by staff that it was "obvious" I had either overdosed or was in extreme withdrawal from some (illegal) narcotic, and appeared suicidal. Incredible! What I had scrawled was ignored! I was taken and locked in a room and strapped down. Blood was drawn. A psychiatrist came to me. I tried to make some words. After feigned sympathy, he told another physician within ear shot (when I can't speak, people think I can't hear - god knows why) that I was "the most depressed person" he had ever seen and needed long-term psych care! At 1:00 a.m., I was transferred to a tertiary care pysch hospital by ambulance ten miles away. (I have had NO medication in the meantime, and no food.) At 3:00 a.m., I was admitted to a locked psych unit with prison cell steel doors. I was given two Tylenol #3s(!!) then, transferred from the ambulance gurney to a "mattress-board." They strapped me to the board and carried me to a locked room and placed on a floor with two other truely mentally disturbed, but nice, guys. The pain the next hours created a living hell. At 6:00 a.m. I got 2 more #3s, still completely unable to say words. I managed to catnap until about 8:00 a.m. My ability to speak returned, but was in very high pain - especially being thrown off of my normal daily drug regimen. I explained to a nurse what was happening. A student shrink visited me and told me that I was being held for 72 hours (3 days!!) under a NY State Law and could be held for up to an additional 72 hours for surveillance! This was Saturday. The only medication I got that day was more Tylenol #3, imipramine, and docusate sodium (a stool softener). I was allowed "two phone calls" per day. My significant other was somewhere in Chicago. My neurologist in Kansas City was out of town and the phone service supposedly relayed my call to the physician on call. (No attempt to contact me was made over that weekend as far as I know.) I reached my sister Seattle, but there was little she could do for me in New York - but she did raise some hell, thank goodness.

Anyone reading this knows about pain, so no details are necessary. I finally talked to another shrink early Sunday a.m. He permitted me injectible Imitrex (it is not the "be all, end all" for me that it is for others). A couple of hours later, I could have nortriptyline and lithium, which at least slows my beast way down. And, nefazodone and Tylenol #4s. This masked the depression and pain. I was allowed unrestricted access to these drugs from then on.........

I was released 5:00 p.m. Tuesday afternoon - to the hour, 4 days after this began. (When I was admitted at 3:00 a.m. on Saturday morning, my wallet had been taken for "safe keeping." When I picked up my wallet, the $400 cash in it - I was on a business trip - was gone. This is a story into itself - police reports, attorneys, etc. I did get reimbursed at the end of December.) A police officer drove me to a train station from the hospital. He gave me cash for a train ticket back to Manhattan, so I could get to my hotel room.

I now carry a typed, laminated card about CHs and some of its manifestations with two neurologists' names on it. Hopefully, this will keep me out of a similar situation. I recommend this for others.

Final note: My chronic CH induces severe depression and suicidal thoughts continually without treatment. If the beast makes you depressed, please see your neurologist about treatment. - I prefer nefazodone (Serzone) after having tried others. - It helped me. It could help you.

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