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Topic: 4.5 years pf. Now 12 wks into it! (Read 650 times) |
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bertling
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4.5 years pf. Now 12 wks into it!
« on: Oct 24th, 2005, 2:41am » |
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Hi, 4 1/2 years ago I injured my neck while at work, 2 days after the injury I developed flu symptoms with a high fever, waking up sweating buckets. One night They hit and it was 9 weeks of hell on earth. Diagnosis--episodal clusterheadache sufferer tyvm. have a nice day.
4.5 yrs later, different part of the country, new job, new start, boom!
The first cpl weeks are managable, maybe 3 or 4 per day, I come here first since i've tried to forget this part of my past, I suspected new developments.
I try Kudzu, melatonin, and magnesium. Recalling the pain of the first bout over 4 yrs ago the same using verapamil, prednisone and Imitrex as abortive. Week 3-4 up to 6 a day 3 ER visits for oxygen ( Share-holder now at local medgas supplier), they begin to peak at this time and hold for at least 2 weeks kip 7-9 steadily every time. I refuse to give any a kip 10 but am certain each time "this" one tips the scale.
I've just returned to work 2 weeks ago after 3 wks off on disability since I drive a semi as a profession, these are not manageable when driving for me.
I Should mention I came off all meds, keeping only Oxygen and abortives, best luck in alternating Zomig rapimelt and Relpax 40 mg ( later seems to hold any others from hitting me up to 17 hrs).
I've gone up to 36 hrs PF off and on in the last cpl weeks, but the last few days i'm getting 2-3 per day and the kip is rising a little on me again. I'm an expert with my headaches, they are mine, all mine.
Doctors in my new home are curious but seem somewhat ignorant of clusterheads, it took me some time to find one who would listen with an Intent to learn more. I havent gone to see a neuro here, what's the point i know what these are, ER they sent me in for a mri, no abnormalities there.
I'm dragging this on I know it, i'm sure If your chronic you can understand what i'm thinking, I mean 12 weeks almost 13, wtf is going on with these @#% headaches have I graduated from episodal class of 2001, neurologist to tell me so will be a 2 month wait to see.
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Kate in Oz
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Re: 4.5 years pf. Now 12 wks into it!
« Reply #1 on: Oct 24th, 2005, 5:13am » |
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Hi Bertling,
Sorry to hear that your headaches are back!!
I don't have much advice, I'm not chronic only eposodic altho I did have one cycle that lasted 6 months and that was hell so I can kinda appreciate what your going through.
All I have to say is... keep looking til you find a doctor who is interested and willing to work with you. In the meantime, you've found this site and that's got to be a good thing  There is plenty of information and lots of support.
Hope you get a break real soon,
Kate
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Gator
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Re: 4.5 years pf. Now 12 wks into it!
« Reply #2 on: Oct 24th, 2005, 1:51pm » |
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Well hello there Bertling. Sorry to have to welcome you. I know all things being equal, you'd just as soon not have a reason to be here. We all feel that way.
Looks like you've been doing some reading and experimenting on your own. Good for you. Read everything you can find and make printouts to take to the doc and neuro. Best to go in armed with info. Hopefully, you'll find a doc and a neuro who is willing to work with you. It's rare, but it happens.
Chronic is "defined" as more than a year with fewer than 30 consecutive pain free days, but I wouldn't get hung up on labels. A label won't change the nature of what you have to deal with. It doesn't matter what you call it, it sucks either way. The important thing is to get the appropriate medical treatment as soon as possible. Looks like you are already working on that.
Wishing you good luck and pain free days and nights,
Mike
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bertling
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Re: 4.5 years pf. Now 12 wks into it!
« Reply #3 on: Oct 25th, 2005, 9:27am » |
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Well my doctor is ok, he basically lets me tell him what i want, and he gives it to me, not sure if that's just the easy way out for him or compassion.
Pulling outta work again and can't stop feeling guilty about it , it's the biggest stress next to the headaches. But it's best, i cant deal with the pain in public or at work adequately i need my safe-spot at home with my routine and my O2 tank.
This is week 13 now and i'm going to throw indometh into the mix and see what happens, maybe back onto the kudzu and steady oxygen, doctor thinks i should get onto prednisone but at this stage im thinking i'll hold off.
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Gator
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Re: 4.5 years pf. Now 12 wks into it!
« Reply #4 on: Oct 25th, 2005, 10:36am » |
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I don't know if you've seen these links, so I'm gonna post 'em anyways. Maybe there will be something you haven't seen yet that you can take to the doc. It's all good info anyways.
You may also want to take a look at the OUCH Canada website. I haven't been there in a while, but there may be someone with more specific information as to what's available for you.
http://www.clusterheadaches.ca
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
If you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need. Check them out here:
https://www.pparx.org/Intro.php
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. It must be used correctly to work, though. Get it prescribed for up to 15 lpm through a non-rebreathing mask for no more than 20 minutes. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tell about using O2:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
http://www.headaches.org/consumer/topicsheets/oxygen.html
http://www.chhelp.org/mhni.html
Here is a link to a letter that may help explain things to your friends, family and co-workers.
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm&added=04/01/04&code=CB
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bertling
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I love YaBB 1G - SP1!
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Re: 4.5 years pf. Now 12 wks into it!
« Reply #5 on: Oct 26th, 2005, 5:58am » |
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Thanks, some good info there, just when i thought i knew everything,...I guess my wife was right.
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