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Topic: New arrival (Read 886 times) |
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Sgt1105sn
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New arrival
« on: Jan 15th, 2006, 12:38am » |
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Hi, I'm Scot. I have been a CH sufferer for 18 years. It is sad and it is nice that I have found this web site. Nice because I have finally found someone who can relate to what I am going through when I get a CH. Sad because I never realized that there were so many people out there that suffer like I do. I have been free for almost 2 1/2 years and they just came back on 01/09/2006. what a great way to start a new year huh. As I type this I can feel one just lurking in the front of my head. I don't tell people at work about my condition because could mean my job if they truly knew what kind of pain I deal with when they come.
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gobby
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Re: New arrival
« Reply #1 on: Jan 15th, 2006, 12:57am » |
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Hey Scott,
Welcome home. I'm glad to see you found our little corner of the web. I think a lot of us here know what you are going through at work since most people have no clue what a CH really is and how much is does hurt when a really bad one hits. I don't know what type of work you are in, but the folks at my job (Airport Ramp) are really supportive of me. It did take some time for me to get them to understand what I go through though, and telling the same horror stories over and over got very old, but in the long run it all worked out for the best. I wish only the best for you as well. You never know, people can suprise you sometimes.
Pain free days ahead for all of us! 
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Things that don't kill us only make us wish we were dead.
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Sgt1105sn
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Re: New arrival
« Reply #2 on: Jan 15th, 2006, 1:06am » |
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Thanks gobby. I work in law enforcement, in Rockford Illinois and am also the Mayor of the community I live in. So I keep pretty busy . It does take a big toll on you when your trying to get things done. The tuff part is being afraid to go to sleep because you know one is just around the corner.
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Chonas
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Re: New arrival
« Reply #3 on: Jan 15th, 2006, 1:39am » |
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Scott, many years ago I also experienced a lot of difficulties at work because of CH attacks, till I discovered that the less pain killers I used (which usually also cause rebounds) at night and the more I allowed CH attacks to visit me when I'm supposed to be sleeping, then during the day I don't have any attacks at all or if it had to happen it was very unfrecuent and almost predictable.
I'm only saying that it worked and still works for me, and I must also add that a long time ago I decided to take very little or no pain killers at all, I only use them when I'm so exausted that I need a good night sleep and then I get ready for the early morning pain and maybe one more attack at noon.
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Here we go again...
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Jonny
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Re: New arrival
« Reply #4 on: Jan 15th, 2006, 1:48am » |
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Scot,
Have you tried 02 to abort?
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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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burnt-toast
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Re: New arrival
« Reply #5 on: Jan 15th, 2006, 8:55am » |
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Welcome aboard Scott,
You haven't provided any information ony your current treatment(s). The following link will provide some good information and I'm sure others will provide useful links as well. If you're not attempting to gain some control over this nightmare you are probably suffering more than necessary.
http://www.aafp.org/afp/20050215/717.html
You've landed in a good place. There is a wealth of information on the site and folks will help you deal with and understand this disease when they can.
Don't be afraid to let us know how things are going.
Best wishes
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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Phil the Desert Rat
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Re: New arrival
« Reply #6 on: Jan 15th, 2006, 1:21pm » |
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Scot,
Happy New Year, indeed! My first round began on January 1, 2006, at 1:30 in the afternoon...what a way to begina new year! Other than the garden-variety of sometimes self-induced headaches, I had no history--personally or family--of headaches until that awful day. At 39, I guess I am lucky (??) that mine started later than most. Though I've only been here since 3 or 4 days ago, I can attest that these are a great bunch of people, and have been an enormous help to me.
I understand your concerns with work. I am a geologist, in charge of 5 geologists working on a world-class high-profile orebody characterization project. I was baffled at how to explain my need for time off to deal with this first round. My CHs were coming at least 2 during the day, and 1 at night. Really messed up my schedule. But work was surprisingly supportive...helps that the HR guy's sister has been a CH sufferer for several years now. He knew more about this than I. I hope I will be better prepared to manage through the next round (knock on wood, I think this one's done). In any event, you'll find a huge amount of support and info here. I know I have!
Welcome aboard, and best of luck to you.
--Phil
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Sgt1105sn
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Re: New arrival
« Reply #7 on: Jan 15th, 2006, 4:28pm » |
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currently I am taking 100mg of Amitriptyline at night before bed time. And when hell arrives I take Butalbital during a major one (Fioricet) . after I posted my last message in early am I got off work went to bed and 20mins. later it hit me. I doubled up on the Amatriptyline and popped 2 Butalbital and jumped into a hot shower and put the shower head on my head and it went away in about 10mins. Another one bits the dust!
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Kris_in_SJ
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Re: New arrival
« Reply #8 on: Jan 15th, 2006, 9:15pm » |
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Hi Scot,
Welcome. Sorry you had to find us.
If the only weapon in your arsenal if Fioricet, you're in deep trouble. It will also cause rebounds.
Hopefully you have a diagnosis from a reliable neurologist. If you do, then you need to seek appropriate treatment from another one. There are meds (and non-meds like oxygen) available to treat clusters effectively while you work - regardless of your occupation. They don't make you sleepy, they aren't dope, and they work!
Please follow this link for a rundown of the latest.
http://www.brightok.net/~mnjday/chtherapy.pdf
Then get some appropriate treatment. Flush the Fioricet.
Hugs,
Kris
P.S. I always stop at Rockford on my way to Madison to see my sister - The Clocktower.
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Kevin_M
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Re: New arrival
« Reply #9 on: Jan 15th, 2006, 9:34pm » |
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on Jan 15th, 2006, 4:28pm, Sgt1105sn wrote:| currently I am taking 100mg of Amitriptyline at night before bed time. And when hell arrives I take Butalbital during a major one (Fioricet) . |
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Keep your eyes ahead of the ball with the previously posted info above. If the fioricet is still working for you now, it will fail you in the future to come, don't be up hell's creek without a paddle. It was my first script a long time ago but didn't last long, and sure as hell doesn't work anymore.
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| « Last Edit: Jan 15th, 2006, 10:52pm by Kevin_M » |
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E-Double
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Re: New arrival
« Reply #10 on: Jan 15th, 2006, 10:28pm » |
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Hiya
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
You can also look at the fact that you are in public office as a wonderful opportunity to educate the "world" to our dreadful disorder!
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
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Beastfodder
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Re: New arrival
« Reply #11 on: Jan 16th, 2006, 5:24am » |
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Rock and hard place - never a comfortable place to be with work and CH.
I'm kind of guessing the alternative therapies are off the agenda - so my vote goes for O2 with a high flow non-rebreather mask.
All the advice above is good - melatonin would get my second vote in your shoes.
Best of luck in getting on top of things
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O2 and clusterbusters - naturally
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BarbaraD
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Re: New arrival
« Reply #12 on: Jan 16th, 2006, 7:17am » |
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Sgt,
I'm for the melatonin to get some sleep. I take 9-12mg at night before bed. It took several weeks before it began to work, but was worth the wait. Now I sleep thru the REM sleep and get some rest at night (different from before). Gets me thru the day hits. I usually wake up about 3-4 a.m. with the first signs of a CH and immediately hit the coffee pot. If it's above a 4, I also hit the O2 (along with the coffee). This usually aborts the morning hit.
During the day I keep the hits down with coffee (black) and O2.
Recently I've started taking Kudzu (which has worked for a lot of people here) and it seems to be helping. I take 3000mg in the morning. Have only been taking it a little over a week so the jury is still out on it right now, but it's worth a try. You can get it at the health food store.
Most of us have found that pain killers only cause rebounds and don't help the CH at all. Excedrin ES works about as well as anything else (in the pain killer class) for me, but will cause rebounds if taken regularly.
Vaso constrictors are what stops the headaches (the triptans or ergotomines) if they get full blown. Most here swear by Imitrex - me I take cafergot for those above an 8.
Eric is right - you're in a perfect spot to get the word out about CH. "Mayor suffers from rare disease!" I can already see the headlines in the local paper now! Don't knock it - I ran an article in our local paper and you'd be surprised at the people who turned up in my office with CH - looking for someone who understood. They thought they were all alone.... In your position as mayor you might can do more than you think...
Hugs BD
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