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Topic: How am I going to do this? (Read 413 times) |
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chockey
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My body seems to be striking against me!
 
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How am I going to do this?
« on: Aug 4th, 2005, 7:44am » |
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Ok...so I'm new here and I haven't officially been diagnosed with CH yet but everything I'm experiencing points in that direction. These last few weeks have been hell. My work is suffering, my sleep is suffering. Besides wondering why the man upstairs has given me this affliction, I'm wondering how I'm going to go the rest of my life like this. I've been reading the posts and I understand that these go into remission so hopefully mine will stop soon but I'm also reading that even with all the various preventative medications out there, people are still getting hit when their cycle comes around. Is there anyone out there that is on preventative medication that has not had their cycle come back? Am I doomed to rely on drugs to rid myself of the pain as opposed to drugs that will keep the pain from coming. I'm at the point where I fear going to sleep at night because I know I'll be woken up by this horrible pain. I'm only 26 and to think that I'll have to go through this every year for the rest of my life is not a pleasant thought. I just don't know if I can go through all this.
Scared in Utica - Chris
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seasonalboomer
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Re: How am I going to do this?
« Reply #1 on: Aug 4th, 2005, 7:57am » |
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on Aug 4th, 2005, 7:44am, chockey wrote:Ok...so I'm new here and I haven't officially been diagnosed with CH yet but everything I'm experiencing points in that direction. These last few weeks have been hell. My work is suffering, my sleep is suffering. Besides wondering why the man upstairs has given me this affliction, I'm wondering how I'm going to go the rest of my life like this. I've been reading the posts and I understand that these go into remission so hopefully mine will stop soon but I'm also reading that even with all the various preventative medications out there, people are still getting hit when their cycle comes around. Is there anyone out there that is on preventative medication that has not had their cycle come back? Am I doomed to rely on drugs to rid myself of the pain as opposed to drugs that will keep the pain from coming. I'm at the point where I fear going to sleep at night because I know I'll be woken up by this horrible pain. I'm only 26 and to think that I'll have to go through this every year for the rest of my life is not a pleasant thought. I just don't know if I can go through all this.
Scared in Utica - Chris |
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Chris,
Welcome to the site. First and foremost, people here understand what you are going through. Secondly, we understand your fear and the purpose of this site is to provide support that allows you to manage that fear and hopefully help you find the tools that might help you manage your cluster headaches.
I will tell you that the folsk here on the site are actively involved in fighting their cluster headaches. They're here because they choose not to give in, but fight using tools that are available to do so. I'm going to ask you to start by doing one thing in the way you think about them. Begin by stripping certain words from your language about them. Words like "doomed" and "going through this the rest of my life" are not going to help you in building your mental, physical and spiritual arsenal to fight.
If you have cluster headaches there is a very good likelihood that you will experience them in the future, either as as an episodic sufferer or as a chronic sufferer. In the middle of a cluster cycle this is not a great thing to think about, but there are ways to fight them and allow you to retain your quality of life and not be "doomed". But it takes work.
Read as much as you can on the site. The links for medications, alternative treatments and improtantly, the oxygen therapy link are all great at helping you ready for a visit to the doctor. GO SEE A DOCTOR. You need to first rule out other conditions. You'll probably end up at a neurologist and they may end up wanting to give you a cat scan to make sure you don't have anything else.
Then, if you are diagnosed set up for the fight. And hangout here and learn how other people are dealing with cluster headache.
Good luck and read as much as you can. And get to a doctor.
Scott
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Sandy_C
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Re: How am I going to do this?
« Reply #2 on: Aug 4th, 2005, 11:10am » |
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Nice to meet you - sorry you have to be here. Ditto what Scott said. Your first course of business is to get yourself to a doctor and get a proper diagnosis. Then, you can start building your arsenal for fighting with and coping with CH. This board and the people on it are awesome, and you will find them so very informative and helpful. Hang in there.
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jcmquix
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Re: How am I going to do this?
« Reply #3 on: Aug 4th, 2005, 11:51am » |
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Same here.....
Welcome Aboard....
Get to a Dr and get a DX....
Get Meds.....
Hang in there..... Fight the Good Fight.....
Pain Free days to You !!!!
Charlie
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nani
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Re: How am I going to do this?
« Reply #4 on: Aug 4th, 2005, 1:04pm » |
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How are you going to do this?
We are going to help you. CH sufferers are the strongest, toughest mofo's that ever walked the face of the Earth. Whenever we see one of our own struggling, we pick 'em up and help them get back on their feet. And we fight together.
So...that said...
Get your butt to a dr. and get a diagnosis and some treatment. Look around here for strength, support and ideas.
hugs and pain free wishes, nani
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bnfreeman
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Re: How am I going to do this?
« Reply #5 on: Aug 4th, 2005, 4:24pm » |
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Chris-
The good man upstairs never gives us anything that we can't handle. In the beginning I thought the same things you did. And I'm sure there are many others too. But you found an amazing support group here. When I found it, I was so relieved. I knew I wasn't crazy and I finally found others who were going through what I was going through. YES, you can do it!!! There are going to be good days and bad days, but we are all here for you. Find a doc who will listen!! Good Luck!
Brandi
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E-Double
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Re: How am I going to do this?
« Reply #6 on: Aug 4th, 2005, 4:42pm » |
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on Aug 4th, 2005, 1:04pm, nani wrote:How are you going to do this?
We are going to help you. CH sufferers are the strongest, toughest mofo's that ever walked the face of the Earth. Whenever we see one of our own struggling, we pick 'em up and help them get back on their feet. And we fight together.
So...that said...
Get your butt to a dr. and get a diagnosis and some treatment. Look around here for strength, support and ideas.
hugs and pain free wishes, nani |
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I tend to write a lot......not necessary this time. Nani said it all!!
Stay strong and live!
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Kris_in_SJ
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Re: How am I going to do this?
« Reply #7 on: Aug 4th, 2005, 6:41pm » |
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Hi Chris,
Welcome. Everything has been said already. If you receive the CH diagnosis, here's a link you need to read, memorize and give to your doc:
http://www.brightok.net/~mnjday/chtherapy.pdf
Take heart ... Even if you are diagnosed as a clustehead, every single one of us is different. I'm an episodic with a 3-4 year remission between episodes. Each time I'm in remission, a new med or treatment comes along to help the next time around.
So ... kick yourself in the butt, and do what you have to do. We're here for you 24/7/365.
Kris
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LadyElaine
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Re: How am I going to do this?
« Reply #8 on: Aug 4th, 2005, 7:13pm » |
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Hi Chris,
Back when I first started having clusters I did not have a clue what they were. The doctors did not have a clue.
I thought I was dieing. Between the Doctors putting me through hell and the clusters I did not know what was worst. I had all my top teeth pulled. I had shock treatment done on me. I was given every pain killer they could find. Your so blessed because you have a clue. You can avoid a lot of things we done. Read what you can print out the list of meds we take, take it with you to your doctor, Go to a nero! These days most know what clusters are and how to treat them, but some times you have to help them.
You are so far ahead of some of us already. They won't kill you, with the right frame of mind and the right meds you will be ok.
I have had them amost 25 years and was chronic, with the help of people here and all the reading I am now Eposidic. I was able to raise a family four children hold a job, it wasn't easy but I did it. If I can do it anyone can !
I won't lie and say its easy, but we can do it.
I use to ask why me, but through the years it helped me understand pain of all kinds and it helped me to be a better person to others who hurt. This pain of clusters helped me survive cancer. I don't belive I would have beat it had I not been faced with clusters first.
I am glad you found us. Don't give up your faith, stand strong and lean on us from time to time. We will be here for you.
Read all you can be ready but the number one thing is to get to the doctor!
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Sean_C
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Re: How am I going to do this?
« Reply #9 on: Aug 4th, 2005, 9:28pm » |
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The first thing you need to do is to get to a Nuerologist and start getting on a preventative medice and discuss abortive medications to help relieve the pain during an attack. Read and PRINT alot of information here and OUCH.com and discuss them with your doc.
Hang tough and keep us posted.
PFDAN to you.
Sean..................................
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BlueMeanie
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Re: How am I going to do this?
« Reply #10 on: Aug 4th, 2005, 11:47pm » |
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Hi Chris,
So sorry to hear the Beast has found you. Others have given some pretty good advice. The one thing to remember, if you do have Clusters, they won't kill you. Hope you get a correct diagnosis soon. It's not easy living with Clusters, but we all manage one way or another. Hang in there Chris. For many of us that are episodic, we get months of breaks in between attacks. I'm not sure how long it's been happening, but hopefully you'll get a break soon. Definately check the medication info to the left of this page so you can find an abortive to stop the pain quickly.
Sending vibes they end soon Chris.
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millie the episodic
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Re: How am I going to do this?
« Reply #11 on: Aug 4th, 2005, 11:57pm » |
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OK Chris,
You have to find a doctor, but don't go unarmed, or fall for just anything.  I guess I telling you that you may know more about this THING than they do.
Be reasonable and respectful of the meds that they may give. It is up to you to research the meds for reactions and side affects, remember this is your body. 
I learned from this wonderful site that (I) had to find my bullet. What will help me fight this demon. You have to find what works for you.
But don't just claim this hell, get the diagnosus, so that you will know what you are fighting against. 
If you are proven to have these things, you will have to build up your stength (in God) and do battle when you have to, meanwhile live life to the fullest when in Peace. 
If it don't kill you, it WILL make you stronger 
And don't just sit there and wait on another one to come, because if you are a clusterhead, it will come. Just just don't dwell on them, but know this, that this too will pass. I has helped make me a better more respectful person. 
I have found that The Man upstairs has fixxed it to where when I'm in recession, I can hardly remember ordeal. But you will know what time it is, at the first twing of pain, the next time. 
Take care of yourself, and help the doctor help you. (This must be pretty good stuff, it is helping me too.) 
PFDAN Millie
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burnt-toast
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Re: How am I going to do this?
« Reply #12 on: Aug 6th, 2005, 8:55am » |
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on Aug 4th, 2005, 7:44am, chockey wrote:Ok...so I'm new here and I haven't officially been diagnosed with CH yet but everything I'm experiencing points in that direction. These last few weeks have been hell. My work is suffering, my sleep is suffering. Besides wondering why the man upstairs has given me this affliction, I'm wondering how I'm going to go the rest of my life like this. I've been reading the posts and I understand that these go into remission so hopefully mine will stop soon but I'm also reading that even with all the various preventative medications out there, people are still getting hit when their cycle comes around. Is there anyone out there that is on preventative medication that has not had their cycle come back? Am I doomed to rely on drugs to rid myself of the pain as opposed to drugs that will keep the pain from coming. I'm at the point where I fear going to sleep at night because I know I'll be woken up by this horrible pain. I'm only 26 and to think that I'll have to go through this every year for the rest of my life is not a pleasant thought. I just don't know if I can go through all this.
Scared in Utica - Chris |
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Like the rest of us - you must find a means of dealing with this nightmare that work for you. Venting on the board every now and then helps when it gets to you.
One positive thought that I like to use is that at least we suffer from a disease that doesn't limit the time we have to look for a cure.
Hang in there.
Tom
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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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cazman
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Re: How am I going to do this?
« Reply #13 on: Aug 7th, 2005, 10:42am » |
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i dont know if anyone mentioned this but there are alternative meds too clusterbusters .com its just another way to fight the good fight ive been pf for about 4 weeks and i chock that up to alternative methods wich are posted and disscussed here aswell, ive found you do what ever it takes to fight the beast off , but dying is not one of them and id be lying if i i didnt think about that answer in the past but thanks to alot of help from the clusterhead army here i know there is hope and that together we will beat this it only a matter of time.
ERIC T
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