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kevinchristian77
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Kinda new user
« on: Jul 14th, 2005, 2:13pm » |
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Hello everyone, I have to say that this site is great.I apologize if I ramble, but i have alot on my mind and Im not to sure about the etiquette. I got my first cluster about five years ago when i was 22 and i did not know what to do, fortunatly my first bout was mild and only lasted for 2 weeks. The second round I woke on christmas morning to a cluster(merry christmas). that was 2003, the bout lasted for 4 MONTHS! It was horrible. My primary care doc had only heard mention of cluster headaches, so needless to say he was not all that helpfull. So one day I went online and I was going to do my own research and I stubled across this website. What a blessing. You see, my wife (god bless her) was having a very difficult time dealing with the clusters. She did what she could, but neither of us really understood what was going on. This site helped both of us out tremedously. Thank you. During this last bout, I would have 3-4 clusters a day lasting anywhere between 45mins to 3 hours. they came like clockwork, 11am,4pm, and finally at 3am. I knew exactly when they were going to come. That was the only nice part. During the 4 month ordeal was on peridisone for the entire 4 months( thats a whole nother story) lithium,verpamil, and a few other prevenitive drugs. I also was on imitrex(and three other migrane drugs because insurance would only pay for i refill a month, so I was forced to get samples from my doctor) and also on vicodine,percocete,valium,demoral. It was a dissaster. Anyway, I do have a question for anyone, My clusters pretty much come every two years, its coming up on 3 months till they come back and Im scared as hell. I constantly worry about them coming back and every crick( you know that horrible kknot in the back of the neck) in the neck i get i freak out wondering if there back. Does everyone else have this axiety, and how do you cope. Once again, thanks for being here.
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jcmquix
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Re: Kinda new user
« Reply #1 on: Jul 14th, 2005, 2:38pm » |
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Welcome Aboard...kevinchristian77
Well I can not speak for everyone here, but I can give you my stand..
Read, Read and Read more of the information here, this is the only place you are going to find information about CH, and this is the only place that you are going to find someone who knows what you are going through.
I have had the CH as long as I can remember, I was only DX with CH about 5yrs ago.
Well the about 45 days ago I started this cycle. Its been almost 3yrs since I last saw the BEAST. I was at my witts end when I finally found this site again, I was ready to end it all.
In this short amount of time, with the support of the people here I have a different outlook on things. I am seeing a Nero Dr & HA Dr, who have DX me again with CH.
Point being I am still fighting this BEAST on a daily basis, but I now have many more tools to fight it with. I know that I can put this F**ker back in his box.
Don't wait around on the BEAST to strike, just be well informed and prepaired, so when he does show his ugly face, you knock him on his A**.
I know its tough, but do not give in, you got to Fight the Good Fight and Hang Tough... Read & Print out the information here and find Yourself a good Dr, that is willing to work with you.
Pain Free Days & Nights to YOU !!!
Charlie
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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kevinchristian77
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I love YaBB 1G - SP1!
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Re: Kinda new user
« Reply #2 on: Jul 14th, 2005, 2:48pm » |
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Thanks for the encouragement. The last round completely sucked, i have never felt so helpless and so isolated from the world for the months it was going on, and i dont want to have that happen again.
while i was going through my headaches, my "friends" thought I was crazy and pretty wrote me off. They couldnt or wouldnt understand. I found this site and it was such a sense of relief to know I wasnt crazy and also for my wife also. I didnt post anything at that time, because i was stil feeling insecure about the clusters due to my "friends" lack of understanding. But know, im scared to death and Im going to need every bit of strength to make it through another round.
Question, have you ever heard anyone refer to CH as suicide headaches, during one of my clusters i got so worked up and freaked out by the pain and everything else, my wife called an ambulance and the paramedic new what was going on and referred to it as that. It really scared me, that it was being called this by some medical professionals.
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jcmquix
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Re: Kinda new user
« Reply #3 on: Jul 14th, 2005, 3:24pm » |
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I know its takes alot to Hang Tough, but I have been there, so I know what you mean....
Yes there are alot of Dr's that still call them Suicide Headache's, atleast here in Florida where I live. I perfer the name Cluster Headache, when you mention the word Suicide, people tend to kind of Freak out...
Find a Dr that you TRUST & will work with you... get yourself on a Prevent Med & an Abortive Med..
Prevent Med ( Will Stop or Slow down the Headaches)
Abortive Med (Will Abort or Ease the Headaches)
There are many Different options here for how to deal with the BEAST, but as I said before you will want to read as much as you can, because you may have to educate you Dr about Cluster Headaches..with the right Weapons you can send the BEAST packing..
Do not be afraid to ask any questions ? The only stupid question, is the one that you do not ask..
If you have any question, just start a thread.. someone will come along and help you with an answer, the lights are on here 24/7/365.
PFDAN's to YOU !!
Charlie
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| « Last Edit: Jul 14th, 2005, 3:26pm by jcmquix » |
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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BobG
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Re: Kinda new user
« Reply #4 on: Jul 14th, 2005, 3:26pm » |
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on Jul 14th, 2005, 2:48pm, kevinchristian77 wrote:
the bout lasted for 4 MONTHS! Some have shorter cycles, some longer. Many are chronic, meaning everyday, year after year after year.
my wife was having a very difficult time dealing with the clusters. She did what she could, but neither of us really understood what was going on. During your pain free time (now) explain to your wife what want/need from her if you should go back into a cycle. Most of us want to left alone, not touched, not spoken to. Don't wait until you are under attack to try to explain it to her. Ask your wife to join in the Supports Corner here. We have some wonderful people there that live and suffer along side their clusterspouse/partner.
Imitrex and three other migrane drugs because insurance would only pay for i refill a month, so I was forced to get samples from my doctor Click on the 'imitrex tip' button on the left side of your screen. You'll learn how to split each dose by half or thirds. Big $$ savings and less strain on the heart. And, have you tried oxygen?
vicodine,percocete,valium,demoral Stay away from the pain killer/narcotics. They won't help with clusters and may make things worse.
Does everyone else have this axiety, Yes, everybody does
and how do you cope. Beats me! Ya just do
Question, have you ever heard anyone refer to CH as suicide headaches, Yes. But, I have only heard rumors and never seen it as fact of anyone actually taking that route. It is also known as the Executive headache, something to do with stress. |
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Stay stressed. Never relax. Never sleep. Ever.
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Bob_Johnson
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Re: Kinda new user
« Reply #5 on: Jul 14th, 2005, 4:54pm » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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kevinchristian77
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I love YaBB 1G - SP1!
Posts: 7
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Re: Kinda new user
« Reply #6 on: Jul 14th, 2005, 5:25pm » |
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thanks for all the advice and help
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burnt-toast
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Re: Kinda new user
« Reply #7 on: Jul 14th, 2005, 9:54pm » |
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on Jul 14th, 2005, 2:13pm, kevinchristian77 wrote: I constantly worry about them coming back and every crick( you know that horrible kknot in the back of the neck) in the neck i get i freak out wondering if there back. Does everyone else have this axiety, and how do you cope. Once again, thanks for being here.
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First off welcome abord the pain train.
Anxiety strikes me virutally every day waiting for the first attack. The anxiety you feel has got to be a normal response to CH attacks - how could it not be?
I deal with it by continually looking for answers and working with a good neurologist who is familiar with CH and is also looking for answers. This site has also allowed me to discuss this nightmare with others who have first hand knowledge.
There's a wealth of information and support here, use it for yourself, your family, and for working with your docs. Let's just hope this thing has lost your address.
Tom
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| « Last Edit: Jul 14th, 2005, 9:55pm by burnt-toast » |
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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