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Topic: I'll never know. (Read 378 times) |
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alleyoop
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I'll never know.
« on: Sep 28th, 2004, 7:19pm » |
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I originally posted this on the general board, but decided to post here in hopes of not making the same mistake twice.
Just as many of you, I took quite a 'journey' before I was finally correctly diagnosed with chronic cluster headaches. I went through the tylenol, headache powders by the box full, OTC sinus meds; you name it, I tried it. C scans, MRI, and even sinus surgery(that didn't go well). When the ENT wanted to do a second sinus surgery, I balked. I finally demanded to see a neurologist. He grudgingly went along but warned me, "He'll just pump you full of drugs."
When I first met Dr. Lazarus(his real name), I was taken aback. He was huge, about 6'7'', maybe 240-250 lbs. He looked more like a linebacker than a neurologist! I gave him my own private nickname- 'Lurch'.
After looking over my medical info and asking a few questions, I told him that my ENT had wanted to do another SS. He told me I could have ten sinus surgeries and it wouldn't help my headaches and then told me what I had.
This was the beginning of a four year relationship with Lurch. From the very beginning, he seemed to be the most empathetic doctor I have ever known. He took great interest in me and how I was doing. If one med didn't work, he was always eager to try something else. Nothing was 'to far out there' for him to try. He had me keep a HA diary and constantly monitored my progress. Whenever I brought him reading material from this site or elsewhere, he would pore over it and thank me. Everytime I responded to some med(though it was always temporary), he would be visibly excited. When they invaribly quit working, you could see the dissapointment in his face.
When I saw him last in July, I told him that since he had upped my verap the last time, that I had had a 25 day PF period but that since then they had come back stronger than ever. At that time I was back up to 6-8 hits a day. I was taking 720mg verapamil and 900mg lithium daily. He wanted me to go to 960mg verap daily + the lithium. He also wrote a script for prednisone, which I never filled. I already had swelling in my feet and was leary, to say the least, of going any higher with the verap.
I had been to the clusterbuster site and done a lot of reading, followed by PM's and phone calls asking questions. I had found a source for the treatment materials, but had been on the fence for a couple of weeks about what to do. I had fully planned on talking to Lurch about it but when I got with him, for some reason, I chickened out- mostly because of the legalities involved and I didn't want him to get the wrong idea about me. Anyway, I didn't mention it.
Last week we had to put my mother-in-law in the hospital(she's doing ok). My wife and I were at the hospital last Saturday visiting when I ran into Lurch doing his rounds. He asked what I was doing there and I told him. He then wanted to know how I was doing. I told him that I had stopped taking lithium completely, had tapered down to 240mg verap a day and had not used the imitrex in almost a month. I told him that although I wasn't completely PF, I was down to a shadow(k2-3) every 2-3 days. He asked me how and I told him. His jaw dropped. I could tell he'd never heard of my new treatment.
He then told me a story I'd never heard and will never forget. He told me that his "best friend in the world" had been a CCH sufferer. All of a sudden I understood why he had taken such an interest in CH. He said that every time something had worked for his friend, he had tried it on me and vice-versa. Anyway, he shook my hand, congradulated me on my success, asked when my next appointment with him was scheduled and told me to keep him abreast of how I was doing. I assured him that I would.
I was about to walk away when I asked how his friend was doing. It wasn't till then that he told me that he had buried him a few days ago. He said that his friend finally reached that point where he couldn't take it anymore. He'd blown his brains out!
Now I'm left to wonder if I could have made a difference. If I had told Lazarus of my new treatment in July, maybe it would have given his friend enough hope to hold on to, wheather it had worked or not.
I'll never know.
..................alley
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nani
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Re: I'll never know.
« Reply #1 on: Sep 28th, 2004, 8:41pm » |
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Alley - i'm so sorry.  there is no way you could have known. Each of us has to do what we have to do. I doubt I would have told my doc. Quote:| I didn't want him to get the wrong idea about me. |
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I get that. There is a stigma in talking about these things.  If only we could feel free to talk to our docs about EVERYTHING.
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lionsound
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Re: I'll never know.
« Reply #2 on: Sep 28th, 2004, 8:49pm » |
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Alley,
you may never know if you could have made a difference there,
but you must know that you make a very big difference for all of us here........everyday.
Thank you,
Lionsound
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JJA
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Re: I'll never know.
« Reply #3 on: Sep 29th, 2004, 9:00am » |
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I may be a conspiracy theorist-type, but i think it's more the governments fault than yours. The law clearly states that cluster buster's drug is illegal even if used for medical purposes. The supreme court has upheld our right to privately discuss these issues with our doctor so far, even though the presidents office (Bush now and Clinton before him) has tried to take this right away in the battle against medical marijuana. Doctors must fear losing their medical licence for talking about illegal drugs. (Ok maybe this belongs on another message board)
You said nothing because of the law; to protect yourself and your doctor. Despite the law, I'd bet you would have said something if you knew your doc had a friend that could benefit. You shouldn't feel guilty. Wonder what would of happened if the law was different not what would of happened if you said something.
Jesse
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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eddie
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PFDAN TO ALL
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Re: I'll never know.
« Reply #4 on: Sep 29th, 2004, 10:07am » |
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if it were not for this site i found about 6months
ago i would feel i had no hope. being chronic
really sucks. i have lost 5 friends in that way
3 were alchohol related why i just dont know
but they all were happy, on the outside but
not on the inside. i lost both parents in 2001
2001 was a trip i also found my wife that yr
my life has been a rollercoaster ride. i have
not been able to try the clusterbuster but
i hope soon i will be able to. i have so much
to be thankful for. 1 my parents 2 my wife
3 this site has helped me. when i first found
this site i cried like a baby not because i was
sad but i was so happy. because i have sufferd
for 20yrs because i never had a doctor that would
understand what i had. so here i sit with $5 bucks
in my pocket and a great wife. with the ch hits
everyday and im still thankful for my blessings.
but i have been in a bad cycle for over a yr."398dys"
the meds i have found here has helped
but no remission yet but i dont give up easy.
i will never go out that way and leave the ones
who love me and the ones who has helped me
that post really touched me. sorry for your friend's
lost he does seem to be your doc and your friend.
i hope to try this method soon {clusterbuster}
THANK YOU TO MY FRIENDS HERE EDDIE 
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PFDAN TO ALL>><< http://www.putfile.com/ededearl>>><music> http://www.myspace.com/pamneddie
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Tom K
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Re: I'll never know.
« Reply #5 on: Sep 29th, 2004, 11:49am » |
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I have to add that I also was "just that close" to taking the plunge. Had the Sig loaded and pointing, then the CH passed. I found this site a few days later. Everyone on here helped. Knowing that I wasn't the only one who paced the floors at night, lost productivity at work and screamed in pain made me feel like "I could get through this". And I have, for many years. Even though I don't post as much as I should and don't come on as much when not in cycle, I still am greatful for each and everyone of you guys and gals that helps pull me through the worst of times. Once I realized how close I was to the edge, that was when I felt guilty for how selfish I was being. I never once thought about the other people in my life when I almost pulled the trigger, only myself. That has all changed since stepping back and looking at the big picture. Thanks to everyone for being there for me and my wife and thanks for Alley for bringing this to the forefront. I think that you should feel pretty good about yourself for what you DID do for his friend. Maybe the 4 years you spent going to the Dr and his using your recommendations and reading materials gave his friend some PFDANs that he spent with his family and helped get through some tough times. You can't help but think the way you are, but there is a bright side to everything and you did help for some time. Hope that gets you through.
Sending Positive Vibes to Alley
T
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"America, you're so fine, you're so fine, you blow my mind. America, America."-Bart Simpson
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floridian
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1) You couldn't have known to rush to tell your doctor. You would have told him anyway, although most doctors wouldn't want to know about something like this. You are not morally responsible for what happened, and guilt is not appropriate (although sorrow is).
2) We do have a responsibility (all of us, not just alley) to help others, to get the word out. We can be proactive and make a difference to many lives.
One specific thing we can do is maintain the wikipedia article on cluster headaches. A statement in that article that mentioned clusterbusters as a promising alternative was changed to a warning that there was no scientific evidence and the method was dangerous. That's the beauty and the weakness of a wiki - anyone can change it. A short article on clusters is now a decent encylopedia article, but if something is disputed (like cluster busters), then we need to battle to keep it fair. If we could get a handful of people who checked on the article every few days, then the word would get out. Wikipedia has over 350,000 articles and more people are using it every day.
http://en.wikipedia.org/wiki/Cluster_headache
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| « Last Edit: Sep 29th, 2004, 12:32pm by floridian » |
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Flounder
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Re: I'll never know.
« Reply #7 on: Sep 29th, 2004, 5:56pm » |
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Alley,
My heart goes out to your Doctor and the family of his friend.
There's not much I can say that hasn't already been said. You should feel saddened by the story but not responsible in any way.
The information on this treatment is available already. I'm sure your Doctor was aware that info you brought him came from this site.
I'm also sure there is more to this story and that your Doctor wouldn't want you to feel bad that you had not shared this with him.
At the time of your last visit you were not sure this was going to be a viable treatment for you. I know I wouldn't suggest this treatment if I wasn’t at a point were I knew it worked for me. Hell, I still have not shared this with my Neuro. I haven't had to see him since I started this treatment 5 yrs ago. I know what his response would be. He's an Arrogant Bastard. You’re lucky to have such an attentive Neuro. Keep him informed as to your progress.
Take Care Bro.
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toolong
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Re: I'll never know.
« Reply #8 on: Sep 29th, 2004, 7:17pm » |
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I have been to the CB site and I don't know if I'm that ready to cross the line into a "Unknown to me"treatment they suggest.I'm sure a lot of people on this site are afraid as I am.Never was really a chicken shit,but the whole thing scares me.If I suggested it to my doctor he'd freak.It is probally worth researching,and I will keep looking into it.Sorry for you and your doctors loss.  David
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Hey,watch this!I saw it on a cartoon and I think it might work!
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