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Topic: One more year with the beast (Read 151 times) |
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wildhaus
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One more year with the beast
« on: Sep 29th, 2007, 1:32pm » |
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As I do every year (well only the second time), I take a look at the past year, another year living
with the beast, it is just over 2 years (and it seems like ages); I have the (doubtful) “privilege” of suffering from CH, and about 2 years of joining this family….. some I had the honour to meet, and some who are still a virtual extended family, and yet a part (and a very important one) of my life, as well as my wife's and 2 boys…..
The head, well it’s still on my shoulders (the last I looked in the mirror)…. and it hurts….. and, it’s still frustrates me, at times, I still don’t think I came to terms with it….. nor will I ever! nor will I ever accept it!
I have given up my (Marta’s, my wife) use of alternative meds., now don’t jump on me, for all the sufferers that this (alternative meds.) work, I’m happy for you! I have stopped because it didn’t work for me, and I think a big part of it was my own fault…… I didn’t believe in it, nor did I give it a real chance. So for the newer ones than me, don’t be as stubborn and “narrow minded” as I am,
do give it a chance, and maybe, just maybe it will do wonders for you………
To the Clusterbusters….. I have gone over tons of documents, studies, posts on CH.com and other info. resources. I have even talked at length with a prominent researcher in the area of “busting”, as much as I think it will be one day part of a proper “school medicine”, and could bring some relieve to CH sufferers, I can not support the use of substances that are outlawed! Yet you all have my respect, you are laying the base and pave the way, you are (in a way) pioneers …… and for this work and courage, I do honestly and sincerely bow to all of you.
But - I refuse to use it, nor can I support or promote it….. I believe in the law and order! or as I already said I am narrow minded.
To my other treatments….. well the GLOA (the violent way of blocking nerves), I do it – I don’t do it, I hate it! Does it help….. yes, but with a very high price: its violent, its scary and its time consuming,
Is it worth the effort? yes! for a relieve of (up to) 8 weeks, that is like being reborn…… the down part, it dose not work all the time!
Verapamill: up it, down it then up it again, and so it goes, like for so many of us…….
But!
about a month ago at a regular (should be done every month, I did it every 2-3 month) check up (EKG) and other , it was detected that (likely) due to excessive use of Verapamill I suffer from irregularities of my heart…. what ever that should be…..
And had to start and lower my use of Verapamill, and Verapamill did work for me! it didn’t take the CH away….. but it did reduce the level and amount of attacks……
So now I am back to (almost) square one….. when it comes to preventive that worked so good for me…..
now the search will start again….. but then what’s new? who do I try to explain this to……. probably most of you have walked this way before……..
O2…. I will not start to overload you with the benefits and advantages of using O2…… It works for me, as an abortive (over 80%, that is out of 10 attacks 8 will be aborted with O2) most of the times, and I hope that with new methods and better delivery systems I will be able to say I have a better way to fight the battle, and most likely more efficient.
Will it win the war….. I don’t think so! but the battle will be shorter and easier ……
Where am I standing?……. I don’t know! ……I know I can’t win the war…. and as I see it, it is
still a long march, drenched in pain……but I sure as hell will try!!!
Do I give in….. No way (well there are those days where I had more then enough). As long as I can be a productive part of the society, a husband (I hope a good one) and a father (probably not a good role model, though), enjoy life, and blessed with friends I may call “family”, and have the will and wish to help each and one of you, in a little way I can, and know, to make yours (and my) life somewhat better………
Then I know I am winning the battle……… I have, what it takes to challenge the “Beast”………
and go on….. and maybe just maybe one day win the war…….
Michael
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Jonny
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Give me a shovel Ill dig my own grave!
 
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Re: One more year with the beast
« Reply #1 on: Sep 29th, 2007, 1:41pm » |
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If I could I would give you half of my PF time, bro.......I dunno, maybe after being chronic for so long I feel guilty for all this PF time while folks like you suffer.
Hang in there brother!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: One more year with the beast
« Reply #2 on: Sep 29th, 2007, 2:16pm » |
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I wish you PF time,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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DennisM1045
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One wave at a time!
  
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Re: One more year with the beast
« Reply #3 on: Sep 29th, 2007, 2:50pm » |
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Thanks for sharing your perspective Michael. I wish you PFDAN too.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Charlie
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Re: One more year with the beast
« Reply #4 on: Sep 29th, 2007, 3:48pm » |
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Do me and youself a favor, Michael; try my technique over and over. You have nothing to lose.
I wish I had more for you but that was nice post.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Annette
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Re: One more year with the beast
« Reply #5 on: Sep 29th, 2007, 4:58pm » |
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Hang in there Michael !
The answer is out there .... I know you are sick to death with trialling new things but please do not give up, or give in ...ever! The magic bullet may just be around the corner.
The list of things have tried and to try for the average CHer is often so very long, because no one yet has found a fool proof preventer adn the search continues.
Daniel and I went through hell and back too and when he didnt get even a day break in those 8 long months we were very close to give up too. But we didnt, and finally he did find a combination that worked well.
Sending you lots of love and all the best wishes. Like Jonny said, if only we can share our PF days and nights.
Things will be OK!
Hugs
Annette
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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E-Double
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Are we ourselves?
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Re: One more year with the beast
« Reply #6 on: Sep 29th, 2007, 7:39pm » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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