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RJ
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Hello from a newbie
« on: Nov 1st, 2002, 5:59pm » |
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Hi my name is Ron and I am so glad that I found this site. I am 41 years old and have had CH since 1985. I am chronic. I wake up with a level 1 or 2, or worse, everyday and I have it all day until I go to bed.
Today is a level 5 and rising. Weather changed last night.
My Neuro has me on Lithium, Indomethicin and Amitriptylin to help me go to sleep. I take over the counter Ginsing, which helps a little. When I get a level 4 or 5 headache she has me take Amerge. This works for a little while but I can only take 2 a day. When I get to a level 10 my wife takes me to the ER to get them to knock me out. I hate that!
Like a lot of CH victums I have a problem sleeping through the night and that seems to lead me into a downward spiral that ends up with the depression, thoughts of suicide, and eventually a trip to the ER.
Anyway, I'm glad to find this site and the people who hang out here. It's nice to not feel so alone anymore.
I saw the information on WWW and am giving that a try, although it's hard to keep pouring it down. I would assume that it gets easier to do with time.
Guess that's all for now.
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OneEyeBlind
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Re: Hello from a newbie
« Reply #1 on: Nov 1st, 2002, 6:33pm » |
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RJ, welcome to the board. There's lots of good info here and good people too. Are you sure you have clusters ? ... cause normally they don't last all day long ... and they escalate in pain raplidly from no headache to full blown in a fairly short time. Try taking the cluster quiz on the left. Also, read some stuff on the board about clusters. Good luck !
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Opus
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Re: Hello from a newbie
« Reply #2 on: Nov 1st, 2002, 6:46pm » |
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Ron, Did you try imitrex or other tiptan abortives?O2? If your nero hasn't suggested them then it's time to get a new one. There is a chronic (Jonny corrected me) on this board who has almost constant shadows (Kip 1-3) with CHs (kip 4 to 10). What do they give you at the er? Narcotics don't work ussally unless you get knocked out like you said. Next time have a note written to get them to try o2 10 to 14 ml/min with a non rebreating mask. It should reduce you pain. Also they can give you a shot of Imitrex (if you can take it). Take the quiz and do some resurce on meds here and on ouch. PJB
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| « Last Edit: Nov 1st, 2002, 7:04pm by Opus » |
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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jonny
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Ahhhh Man, im pissed.......wheres my pic, PJ?
BTW:.......its "chronic"
Dumbass.......LOL
........................jonny
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Opus
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Re: Hello from a newbie
« Reply #4 on: Nov 1st, 2002, 7:03pm » |
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Jonny, Thanks for the spelling lesson, I had to change it back becouse my last cat was too realistic, I'm surprised you were left speachless. PJB
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Zed-Zed-nine plural-Zed alpha,
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jonny
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Coolness 
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domm
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Re: Hello from a newbie
« Reply #6 on: Nov 1st, 2002, 8:48pm » |
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RJ - welcome to the board. Lots of good info and advise. I hope you've clicked your way thru here and the OUCH site.
Pull up a chair and have a seat
domm
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RJ
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Re: Hello from a newbie
« Reply #7 on: Nov 1st, 2002, 9:44pm » |
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Yes on the clusters, I just don't have as many bad ones at night as I used too because of the Lithium. But to get that I have to take double what I do at breakfast and lunch, which is close to toxic my Neuro tells me.
I apologize for not having the terminology down yet. Yah'll are the first people that I have met that describe having the same symptoms that I have. I'm a slow learner but I'll get there.
I think today's could be called a shadow if I understand the terminology, because it didn't change. It was probably caused by my not sleeping well last night. Weather change. Yesterday 73 sunny, Today 44 raining all day...welcome to west Texas!
I used to take Imitrex injections and found that it worked for about 30 minutes then I was back to where I started. I had a long commute which was sometimes pretty rough. And I could blame the stress on my job. I worked in the Texas prison system for 14 years. Lovely job. My Neuro put me on Amerge (Naratriptam HCL). Slow in acting but since I started on Lithium, my headaches are slower in onset than they used to be. The down side is now it takes longer for the group (my terminology) to resolve themselves sometimes. I have also tried Frova (Frovatriptan succinate) It stopped headaches cold in about 10 minutes but it only lasted about 15 minutes and then I was back to hurting. I think this is called a rebound headache. I'll have to defer to the group for the proper term. I have also tried what is basically a chocolate shake with Gensing and some body building enzymes in it from the gym where I work out. Works short term, gets a headache to dull down for an hour or two. Probably the Caffine.
I count myself as lucky because my Neuro tries real hard and is open to suggestions. She is also better than a lot of Neuros that I have seen. One guy told me "it's all in your head". DUH!
Anyway, I hope yah'll are willing to put up with me. I need the education and fellowship.
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Charlie
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Re: Hello from a newbie
« Reply #8 on: Nov 1st, 2002, 11:12pm » |
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Welcome and that was a great post. Lots of info. You're lucky to have a decent doctor. This thing frustrates many because they don't have a good answer. It may be a reason why they look for other causes. They hate this thing almost as much as we do.
You're doing fine and for me, stress was great. I went into an 11 year remission during the most stressful time of my life. I'm 56 and perhaps it's the iffy age factor. I don't know. Here is my neurologist's little method that helped me though some tough times:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
Charlie
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| « Last Edit: Nov 1st, 2002, 11:14pm by Charlie » |
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Mark C
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Re: Hello from a newbie
« Reply #9 on: Nov 1st, 2002, 11:43pm » |
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Welcome to the board RJ,
Pull up a seat and hang on.
Mark
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Darleen
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Re: Hello from a newbie
« Reply #10 on: Nov 2nd, 2002, 3:27pm » |
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Glad you found the site RJ. I remenber when I found this site 2 years ago - my husband suffers - and it was like a lightbulb going on. I was nice to know there are others like him. Like everyone has said - pull up a chair and read - lots of good info.
D 
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