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        New Message Board Archives >> 2004 Posts >> I'll never know (long post)
        
(Message started by: alleyoop on Sep 28^th, 2004, 7:18am)

Title: I'll never know (long post)
Post by alleyoop on Sep 28^th, 2004, 7:18am

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

Title: Re: I'll never know (long post)
Post by OneEyeBlind on Sep 28^th, 2004, 7:36am

Alley, sometimes we change the lives of others and sometimes we don't. Lurch seems like a good doc, he'll use what you gave him and pass it on to someone else in need some day.

Title: Re: I'll never know (long post)
Post by Gator on Sep 28^th, 2004, 7:42am

Geez, Alley

What a reality check. That'll shake your foundation. I guess we never really know just how many lives we touch either directly or indirectly.

Are you doing alright? If'n ya need to talk, let me know, man.

Gator

Title: Re: I'll never know (long post)
Post by alleyoop on Sep 28^th, 2004, 8:19am

Thanks Gator,

Can't say I'm doin' great, but I'm ok.

Thanks man.........

.................alley :-/

Title: Re: I'll never know (long post)
Post by Ree on Sep 28^th, 2004, 8:54am

ALLEY...Dr. Lazarus is a wonderful guy. Relay to him that our family is so sorry for his loss. To lose a friend and feel this helpless in a matter that is just beyond the control of the world. Your Dr Lazarus can make a difference, so be sure that you keep him informed in ways that he can possibly help another CH sufferer. He is learning from you.
When my husband Dave said goodbye to his Neuro we talked about how much she learns from her patients. They have to listen to know. Hope your day is Pain Free... We are having a rainy morning in MA...

Love to you Ree

Title: Re: I'll never know (long post)
Post by Jeepgun on Sep 28^th, 2004, 9:27am

Man.... What a story. So sorry to hear about your doctor's friend. My condolences to your doctor and to his friend's family.

Alley, what is this new treatment you were talking about?

It sounds like you have a wonderful doctor... That can make all the difference in the world.

PFDAN....

-Frank

Title: Re: I'll never know (long post)
Post by vig on Sep 28^th, 2004, 9:57am

absolutely chilling story Bob...
but KNOW this, sharing your stories and experiences here WILL help others.

Title: Re: I'll never know (long post)
Post by alleyoop on Sep 28^th, 2004, 11:22am

Thanks everyone.

Although he may have lost much of the impetus he had to learn about CH, I'm sure Dr. Lazarus can and will learn more from me in the future.

Frank, go to clusterbusters.com.

Vig, I'm sure you know that is exactly why I posted my story. ;)

.........................alley

Title: Re: I'll never know (long post)
Post by Jeepgun on Sep 28^th, 2004, 11:31am

Ah.... Got it. Yes, I've been to the clusterbusters site. If conventional medications no longer do the trick, that will be my next step. Thanks.

-Frank

Title: Re: I'll never know (long post)
Post by Jayne on Sep 28^th, 2004, 12:35pm

Wow Alley, that story gave me the chills.
Don't give yourself a hard time my dear, how were you to know. You never know though Alley, even though you might have mentioned the treatment in time, maybe Lurch would never have said anything to his friend because of the legal aspects of it, you know.......

Title: Re: I'll never know (long post)
Post by Major_Headcase on Sep 28^th, 2004, 1:32pm

Alleyoop,

Ditto what Jayne said, please don't feel bad because in all likelihood your doctor would NOT have passed that info along, despite being a friend ... doctor liability issues being what they are these days. And Karmic issues like that sometimes take lifetimes to reveal their true purpose. Please don't blame yourself ... and congrats on finding something that works for you!

-John

Title: Re: I'll never know (long post)
Post by BlueMeanie on Sep 28^th, 2004, 6:05pm

:(

Sorry to hear that Alley. I really don't think there was much you could have done. The bright side, maybe the doc will look into the shroom therapy a little more and eventually assist in the approval process in some small way in the future.

Take care. PFDAN

Title: Re: I'll never know (long post)
Post by stevegeebe on Sep 28^th, 2004, 8:10pm

Wow!

Steve G

Title: Re: I'll never know (long post)
Post by Jackie on Sep 28^th, 2004, 8:17pm

Ya know, Bob, we just do the best we can going through this life. We keep putting one foot in front of the other and by hook or crook we keep moving on. We have to keep looking ahead and moving forward. It's hard to get on with it if we're looking back.....wishing we would have, should have or could have.
Keep your head up, Alley....you're doing fine. Bless your heart.

Jacks 8)

Title: Re: I'll never know (long post)
Post by Kris_in_SJ on Sep 28^th, 2004, 8:55pm

So sorry Alley!

As they always say - hindsight is wonderful - that doesn't mean your story of alternative therapy would have helped this particular person. However - it might help the next one and many after that.

I hope you can take a little comfort in that. Your wonderful doc certainly can't be a proponent of illegal activity, but there's nothing to prevent him from passing on a certain website address to his friends, family and patients, is
there ... ?

Big Hugs!

Kris

Title: Re: I'll never know (long post)
Post by K-9 on Sep 28^th, 2004, 9:41pm

Alley- thanks for posting this. My heart goes out to you, Lurch, and his friend and all families involved, but...you share this with us and for me, It has the effect of making me want to defeat the beast and to MAKE SURE it doesn't get to anyone else here, or elsewhere. I am saddened by your post, but strangely, feel a little stronger as well. Thank you.

Title: Re: I'll never know (long post)
Post by Sean_C on Sep 28^th, 2004, 10:04pm

Alley I've dealt with Lurch's problem twice so far in my life. Living with a close friends death is something that stays with you forever.

You should let Lurch know how you feel, I think he would tell you that this wasn't due to anything you did or did not do. I only wish Lurch's bud had come to us, family is always here to help if you need it.

Peace

Sean.........................

Title: Re: I'll never know (long post)
Post by Charlie on Sep 29^th, 2004, 1:43am

What a story and what a doctor.

One thing: Don't beat yourself up over this. I'd be willing to bet that there are other factors involved with this suicide as well.

Charlie