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Topic: Dear Chronics (Read 1248 times) |
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Superpain
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Re: Dear Chronics
« Reply #25 on: Jun 15th, 2004, 5:05pm » |
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on Jun 15th, 2004, 4:45pm, ChRoNiCk wrote:| MRI came up with nothing out of the ordinary. Both my GP and neurologist say its cluster headaches. I get them on both sides of my head. I guess the headaches I have all day are what you would call shadows, but they are still pretty nasty. The attacks last anywhere from a couple of minutes to over an hour(these long ones make me wish someone would just put me out of my misery sometimes). Somedays I'll just have the bad shadows all day, most of the time i get 2 or 3 attacks a day. So far the only preventative med I've tried is Prednisone, didn't do jack except give me bad acne. As for aborts, fioricet, ultracet, fiorinoul, cafergot, and most recently relpax. All of these worked kinda well for the first day or two, then they really stopped. The relpax does a pretty good job of dulling the headaches, but so far nothing completely takes them away. |
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Sounds like you need a new doc...
Prednisone broke me out like a 15 yr old living in a bag of french fry's... It took 2 months for my chest and neck to clear up. But it kicked ass on the headaches.
But Pred is just a short term preventative to be used while starting a long term prevent like verapamil, depakote, topomax, etc...
As has been discussed many times here a majority of our experiences have led most of us to believe narcotics not only do not work, but lead to more headaches. And it looks like you agree...
I'd strongly suggest you try O2 if you haven't already.
And imitrex is some pretty good shit too for most of us....
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Chris
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Gator
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Re: Dear Chronics
« Reply #26 on: Jun 15th, 2004, 11:56pm » |
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Quote:Posted by: ChRoNiCk Posted on: Today at 15:45:15
MRI came up with nothing out of the ordinary. Both my GP and neurologist say its cluster headaches. I get them on both sides of my head. I guess the headaches I have all day are what you would call shadows, but they are still pretty nasty. The attacks last anywhere from a couple of minutes to over an hour(these long ones make me wish someone would just put me out of my misery sometimes). Somedays I'll just have the bad shadows all day, most of the time i get 2 or 3 attacks a day. So far the only preventative med I've tried is Prednisone, didn't do jack except give me bad acne. As for aborts, fioricet, ultracet, fiorinoul, cafergot, and most recently relpax. All of these worked kinda well for the first day or two, then they really stopped. The relpax does a pretty good job of dulling the headaches, but so far nothing completely takes them away. |
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I don't mean to second guess a neurologist and a GP and I certainly am not trying to dimish your pain (Pain is Pain), but both sides of the head are EXTREMELY RARE. Attacks of 2 minutes to 120 minutes denote Paroxysmal Hemicranias, not Cluster Headaches.
If you have not tried Indomethacin, try it. It almost 100% effective on EVERYONE with Paroxysmal Hemicranias. The worst that can happen is it will not work.
Prednisone is a transitional drug that is used to keep you pain free while the preventative kicks in - it is NOT a long term treatment due to some nasty as$ side effects. Acne being a more mild one.
Ask your docs to try verapamil 1st and then topamax as preventatives. You might also check into melatonin.
Imitrex Injections, Imitrex Nasal or Zomig Nasal Spray are a few true abortives. You can't really abort with a pill. It takes too long to get into your system.
Besides the reading material on the left, here are some other things to look at:
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
This is the new IHS Classifications Guidelines. You cannot print it, but you can read it.
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
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dab
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Re: Dear Chronics
« Reply #27 on: Jun 28th, 2004, 1:57pm » |
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My HAs started in 1997, when I was 20 years old. At the beginning, my doctors called them migraines. It took a few years, but they became more frequent and gradually developed the cluster-like symptoms - tearing eyes, runny nose, the inability to do anything but wander around in circles during attacks.
Maybe I don't fit the chronic definition, but for four years I have had few HA-free days.
Prednisone gives me a week or two of vacation. I also had this strange breakthrough when I took a two-week trip to Guatemala.
But otherwise I rely on Verapamil to take the edge off the HAs, and ibuprofen no more than two or three times a week to clear things out when I need to function. Sometimes a cold icepack on my neck and a hot washrag on my eye/forehead helps.
I wouldn't describe my headaches as beasts right now. More like a domesticated dog that gets me up in the morning with its noisy barking.
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hdbngr
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Re: Dear Chronics
« Reply #28 on: Jul 7th, 2004, 1:20pm » |
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I got a really bad headache in April of 1997 and it's still here....so seven years and counting. It will spike up and it will go down, but it never leaves. I give thanks for the days it stays at a 2, and I give thanks for the days it only spikes at a 4, and I pray at a 6 that it won't get any worse, all of you know the drill.
I have been lucky as of late, only 2-4 hits per day and I'm chalking it up to a combination of the occ. stimulator and using Zyprexa as an abortive. Time will tell.
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Prense
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Re: Dear Chronics
« Reply #29 on: Jul 8th, 2004, 9:18am » |
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on Jun 28th, 2004, 1:57pm, dabar wrote:| and ibuprofen no more than two or three times a week to clear things out when I need to function. |
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Curtis_Russell
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Re: Dear Chronics
« Reply #30 on: Jul 8th, 2004, 2:43pm » |
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I had them every day for over 3 months this year until I discovered the homeopathic remedy Lycopodium clavatum 30ch. It only works if the headache usually starts on the left and sometimes or even always moves towards the right. One pill every 3 hours until you feel better. It's kept me at no higher than a level 2 headache for 2 weeks now.
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Chronic
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Re: Dear Chronics
« Reply #31 on: Jul 8th, 2004, 3:15pm » |
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I think I may have finally joined the exclusive few. What luck!!!! My CHs started up again November 2003 and they have been getting stronger ever since. The past few months have been brutal. No medication is working for longer then two days, and it's usually just reducing the attacks to 1 or 2 a day (I think Prednisone may have given me 3 PF days at one point?). I gone through Verapamil, Prednisone, Depakote, Lithium, Zomig, Zonegran and one other stronger steroid. The results are in, I'm F'ed. It seems that if I'm lucky enough to get a few days off, they are just building up to explode the next day in a massive wave a blinding, piercing, stabbing pain, stronger than ever.
Well after 17 years as an eposodic, I think I may be joining the dark side. The cycle before this one lasted 14 months, but then I got a year repreive. This ones 8 months strong and getting more potent. I guess I'll never see the bottom of a beer can again.
At least I still have my sanity......
duhh.....duhhh....duhhh.....french toast please
One thing for the rest of you Chronics, how can i afford the Imitrex. I'm trying to use as much oxygen as possible, but I'm going through one multidose vial a day (3 shots). My insurance company won't let me run through more than two 5 vial prescriptions a month.
Thanks for any info....
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Superpain
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Re: Dear Chronics
« Reply #32 on: Jul 8th, 2004, 4:23pm » |
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on Jul 8th, 2004, 3:15pm, Chronic wrote:I think I may have finally joined the exclusive few. What luck!!!! My CHs started up again November 2003 and they have been getting stronger ever since. The past few months have been brutal. No medication is working for longer then two days, and it's usually just reducing the attacks to 1 or 2 a day (I think Prednisone may have given me 3 PF days at one point?). I gone through Verapamil, Prednisone, Depakote, Lithium, Zomig, Zonegran and one other stronger steroid. The results are in, I'm F'ed. It seems that if I'm lucky enough to get a few days off, they are just building up to explode the next day in a massive wave a blinding, piercing, stabbing pain, stronger than ever.
Well after 17 years as an eposodic, I think I may be joining the dark side. The cycle before this one lasted 14 months, but then I got a year repreive. This ones 8 months strong and getting more potent. I guess I'll never see the bottom of a beer can again.
At least I still have my sanity......
duhh.....duhhh....duhhh.....french toast please
One thing for the rest of you Chronics, how can i afford the Imitrex. I'm trying to use as much oxygen as possible, but I'm going through one multidose vial a day (3 shots). My insurance company won't let me run through more than two 5 vial prescriptions a month.
Thanks for any info.... |
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If it's any hope for you, I'm episodic and my last cycle was over 2 yrs, and now I'm PF again. Next time... I don't know... Might be chronic for good too. 
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Chris
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Tiannia
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Re: Dear Chronics
« Reply #33 on: Jul 9th, 2004, 5:20pm » |
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on Jul 8th, 2004, 3:15pm, Chronic wrote:
One thing for the rest of you Chronics, how can i afford the Imitrex. I'm trying to use as much oxygen as possible, but I'm going through one multidose vial a day (3 shots). My insurance company won't let me run through more than two 5 vial prescriptions a month.
Thanks for any info.... |
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That is a lot more then many of us get. And the vials are better then those that have to use the tip to the left. Use as much O2 as you can and stock up on the trex when you can. Ride out the attacks so that you have extra trex when you need it....
Enjoy the time that you have between the HA...
That is about the only advise that I can give you. Dont know if I am Chronic or not. I have been dancing with the Beast at night for almost a year now and the longest break I got was 12 days about 3 months into it. Other then that, it has been constant, anywhere from 2-9 times a day. I have cycles within my cycle I guess cause I go down to only a few a day, then I get blasted like there is no tomorrow, and I am back up to 9 a day. Right now I am happy to get 1-2 a night and just shadows during the day. So I count this as a good time. I can drive home without having to give myself a bruse on my leg to focus on something else besides my head..
Try the lithum / verapramil combo, others here have had good luck with the two together while seperately it really did little to nothing for them.
Quote:If it's any hope for you, I'm episodic and my last cycle was over 2 yrs, and now I'm PF again. Next time... I don't know... Might be chronic for good too.
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Chris, I loved meeting you and it never would have happened without this board. But you are absolutly not allowed to ever get these things again. ***hands on hips, tapping my foot and pulling the full mom thing out**** Honestly hun, I hope that you will be one of the lucky ones that have their last HA and never have to face the beast again. I am so happy that you are PF. I know I keep saying that, but it really is awesome.
-Tia
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| « Last Edit: Jul 9th, 2004, 5:23pm by Tiannia » |
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