chronicclusterheadaches.co.uk

phil h · Posted: Sat Jan 26, 2008 12:17 pm Post subject: PHIL'S STORY

I'm a 55y/o married male caucasian , father of a 22y/o son and 20y/o daughter . My wife Laura is a great support for me . My kids are great supports also . The onset of my CH's was over 6-7 yrs. ago . I was diagnosed With chronic cluster headaches after about 6 months of knocking around the medical community for help . I've received treatment in NYC,Philadelphia,Baltimore and all over NJ. I've gone through many nuerologists and internists along the way . I currently have a nuerologist that listens to me and is still teachable about progress in the treatment of CH's . He however, says that I'm not even on the curve of CHer's response to RX's . It's a curse . What helps most , doesn't work for me . Past medical hx. includes 19 yrs of active alcoholism and IV drug use. I've been sober since 9/25/81. I had a severe case of hepatitis C and battled that for a few years . I was on a liver transplant list and time was running out , when I was taken into a control group and positively responded to treatment almost immediately. After 12 months on heavy Rx's I told I was cured , or a least below detection. I went from over 10 million units of virus to zero in the first 2 months of tx. That was followed by a diagnosis of cancer that required 6 months of chemo and radiation . Being the great patient I am , I'm cancer free for 7 yrs .... knock on wood.......... I got really busy at work following 9/11/01 . Took on about 35 new families in treatment for grief and transitional life planning .I still continue with a least 13 of these families . My stress levels went through the roof , but I did what I do ...... The CH's began shortly after Christmas 2001...... I've seen many doctors and have tried alot of medications .......I've tryed Imitrex pills , nasal and shots . The shots helped for about 9 months , then began creating worse rebound hits . Amerge,frova and maxalt have had little effect . I'm now trying the frova before my windows of hits and it seemed to be delaying the hits for 2 1/2 hours or so , but that failed after 4-5 days . I will try this again . I've been on verapamil 4 x's , depakote 2x's , lithium for 6 months , topomax 2x's , lamictal for 3 months , keppra for 4 weeks , relpax 3x's , neurontin , DHE shots , indomethacin (a hope for a different dx. ) , HBW seeds for 6 months (reduced # and severity of hits for 4 months, then nothing for 3 months ) ,St, John's wart , feverfew , dramamin to sleep ,Acupunture 4-5x's , chiropractors 3x's , EN+T mds , dentists , hypnotherapy, massages , benadryl , grape juice and gingerale,biofeed back techniques ,Hyperbaric oxygen therapy 3 x's(helped somewhat , too expensive ) ............. The things that help : wellbutrin 150 mg 2x's daily , prednisone (tapers and I was on a 5 - 10 mg daily dose for 9 months , it helped for awhile , now just tapers ) ,O2, trazadone to sedate to sleep PM 100mg ,as needed ; I have vicodin 7.5 mgs that I break in half and will take in am if morning window of hits was heavy , It helps as long as I don't use it during CH's . Sometimes I'll take a half at 6pm if the afternoon window was bad , They work ok to relieve physical pain , not head pain .... I go through about 30 of these every 45-50 days. I have a bottle of 4% lidocaine that I put up my nose with Q-tips (numbs ) . I take tums ultra 1000 2x's daily . Coffee , red bulls , ice packs , cold showers , hot baths ,heating pad on lump , walking in park or on beach ,swimming ,reflexology ,meditation, guided imagerys, prayers ,taurine and water......... I have tryed other things , I'm sure.... just can't think of any others........ Oh yeh , I tryed lidocaine patches on my head ????????? I tryed bengay on my head because I was asked a 1000 x's if I tryed it . Burned me bad , Didn't help at all . As you can see I'm not opposed to trying anything once. twice..... three times..... and in some cases four times......... There are other things I've tried . i just don't recall at this moment ............................. Towards the end of 2006, my CH's were 8-10 a day and multiple 10's daily . MD increased my topamil and norvasc for HBP ( by the way, HBP was caused by Rx's and diet ) and my nuerologist put me back on verapamil and brought me up to 960 mgs very rapidly...... None of the medicines helped , I felt worse . On 11/13/06 my heart stopped . My pulse was 20 when the EMT's arrived and then I STOPPED ............ They paddled me at home and brought me back (family watching).... I died again in the ambulance and a 2nd ambulance came to assist - paddled me and brought me back to life again.......... On to the hospital,where I died a 3rd time . I was brought back to life and was in a coma for 5 days . My family was told I would probably not survive off of life support . They were told even if I lived I was surely brain dead ................Surprise!!!! God would not take me at that time . The doctors told me that I had had 3 miracles in 6 days with no medical explanation ...... I spent a month in the hospital ....... Cause of death.... Norvasc overdose .....The norvasc and topramil combined with the verapamil to become a lethal dose of BP medicine over a 14 day period ..... The moral of the story is to always advocate for yourself in treatment matters . I asked the nuerologist if verapamil was ok with the other BP rx's ; he yes they had different mechanisms of function ..... I didn't think that was right at the time , but was in so much pain I lacked mental clarity to object ...... I now have a team of Dr.s. A nuerologist , a psychiatrist and my internist. I am able to get 2nd opinions from 6-8 Dr,s I see in my practice each week . My internist is the quarterback . Everything runs through him . He's a pretty young guy and willing to keep learnimg about CH's . I supply each of my MD's with any updated info found each month . When I see each Dr. we review the data I've sent them. That way I know their heads are in the game ...... My chronic clusters can best be descrbed as a cycle within a cycle . I've
had 11 pf days since onset . 3 days one time . 5 days in a coma (I'm counting it ) and another 3 days pf . I get hit anywhere from 4 to 8 or 10 x's daily . My CH's rarely exceed 40 minutes . It is however hard to measure the times on the 10's . The resulting effects of that are always a few hours to recoup . When I'm at my best I'm getting hit only 4 x's daily and nothing over a kip 7 . My windows in which most of my hits come are : between 12 midnight and 6am and then between 12 noon and 6pm .
95% of all my hits are in those 2 windows .............. Without O2 , I don't know what I'd do . (O2 works for me 50-60 % of the time ) .. O2 is my only abortive remedy............ So I plod on , try and work as much as my CH's allow ........ I'm afraid to go on disability yet . (MD's have been advising for sometime ) I'm afraid of not having to make myself get up and try to work.... I fear the beast will see this as a total surrender.... so for now I continue to fight ... By the way , I lurked on another CH board for a few yrs without ever posting . I was just gathering information and got more and more isolated by the beast ...... Since my comeback in 2007 , I feel more connected and less isolated than before . I credit Ike with drawing me back to the board when I was beginning to withdraw into my own pain . Sherri has kept me up and on the board as well . There are loving and caring people here . Annette,William, Kathy , Paul and Jack ......... There are others here and room for many more ....... Connect here or at least commit to connecting somewhere and not isolate in pain.............. Isolated this beast will beat your ass... I look forward to meeting more new friends here .................... :smt104 :smt104
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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

Sherri · Posted: Sat Jan 26, 2008 3:48 pm Post subject:

Thanks Phil...that is awesome.

Yes, isolating yourself will allow it to win. I look very forward to hearing other's stories, and sharing the ride with them.

Very Sincerely,

Sherri
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"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Ike · Posted: Mon Jan 28, 2008 12:38 pm Post subject:

Thank you Phil, thinking how to answer that. for now i'll just say im so glad your here, we feel your pain

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If you dance with the devil the devil don't change, The devil changes you

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Em · Posted: Thu Feb 28, 2008 10:24 pm Post subject:

Phil,

That's an amazing story. Thanks for sharing. I love that you counted your coma as PF days!!

Em
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'Life is either a daring adventure or nothing' - Helen Keller