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PAMan
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Chronic Sufferer
« on: Mar 21st, 2004, 6:28pm » |
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Hi. I am very new to this site. I have a lot of reading to do I see.
Are there any chronic sufferers out there? I have had these things for over 20 years now with only one period of remission during that entire time. Unfortunately, that was only for about 2 months. And yes, this includes when I take any and all medications. All of them only softened the pain, they never got rid of it. I am currently tracking an episode on average of once a day for the past 6 years.
My problems are that they get worse as I get older and I have become immune to almost every form of treatment. The O2 has recently become non effective. I tried the Verapamil for awhile with some success but the longer I took it, the less effective it became. Now, it does absolutely nothing for me.
As usual, for me anyway, the doctors are a joke. All they ever want to do is feed me more pain pills. I am absoltuly tired of the side effects that most of them cause.
I have come to the realization that I will most likely have these the rest of my life. I guess I will find comfort in knowing that there are other people out there in a similar situation. I am now on this Tyramine reducing diet kick to see if foods with this ingrediant is causing these episodes.
To end, I fell bad for anyone that suffers from these things. Believe me, I know how it feels. To know that a good portion of a life is spent dealing with pain is not good at all.
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Margi
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Re: Chronic Sufferer
« Reply #1 on: Mar 21st, 2004, 6:51pm » |
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Wow, 20 years chronic - my sympathies.  I believe there are a few here who have been chronic that long and longer. I know Jonny's been chronic for at least that long and I believe Elaine was chronic that long but now she does go into remission.
You say the verapamil stopped working? What dose were you at? I have heard Jonny say that he didn't have much success with it until he combined it with lithium. I'm sure he'll join in here and give you his dosages.
Glad you found us, PAMan - hope we can help you find some pain relief.
p.s. how are you delivering your oxygen? If you're using those nose canula things, that could be why it's not working for you. Higher success rate with the non-rebreather mask and a high flow rate - there's a link to Oxygen proper usage on the left.
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| « Last Edit: Mar 21st, 2004, 6:55pm by Margi » |
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UN_SOLVED
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Re: Chronic Sufferer
« Reply #2 on: Mar 21st, 2004, 7:14pm » |
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Just wanted to say, there are alot of chronics here. You're not alone.
Unsolved
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crazyauntboo
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Re: Chronic Sufferer
« Reply #3 on: Mar 21st, 2004, 9:35pm » |
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Hello,
I'm new to the site too and find some comfort that I'm not alone in dealing with these things. I wouldn't wish them on my worst enemy. I've tried verapamil too with no success. O2 works well for me. I have a large tank at home and it has become quite the conversation piece.
I've suffered with ch for 15 years and have tried every drug under the sun. And yes, most doctors are a joke.
I went to the best neurologist in boston and he dismissed me. He told me I didn't have clusters and that if i ate regulare meals and ate certain foods they would go away. What a joke. I told him I tried all that and my clusters were not food related. They seem to come and go so suddenly and mysteriously. I can't imagine you suffering every day. Mine come now only every 2 years for about a month or so. During this time my life is complete hell. I get on average 2 to 3 a day. I'm at the end of my cycle so I can see the light at the end of the tunnel.
I have found that sumatriptan shots give instant relief.
It's under the name imatrex. There are new triptans now that are in nasal sprays and fast disolving pills. You may have to try a few to find one that works.
The only problem is that insurance companies only pay for a certain number a month and it's very expensive.
I usually end up paying for it myself. But you should give it a try. I found it to be a miracle. Good Luck!
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t_h_b
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Re: Chronic Sufferer
« Reply #4 on: Mar 21st, 2004, 9:47pm » |
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Lots of chronics here. Gives you more incentive to find something to stop these damned things.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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jonny
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on Mar 21st, 2004, 6:28pm, PAMan wrote:| I tried the Verapamil for awhile with some success but the longer I took it, the less effective it became. Now, it does absolutely nothing for me. |
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PA Dude,
Tell the Doc you want to try Verapamil and Lithium together, no less than 480 mgs on the Verap and 600 mgs on the Lith.
Verap did nothing for me, Lith did nothing for me, when I put them together WOW!!!.......I go weeks without one headache and Ive been chronic nearly 30 years.
Ive been taking this combo for well over a decade and it has not failed yet, I know of at least 6 other people on this board taking the same and it works great for them too, One neuro I had called it the "Chronics cocktail" and I know why....cause it works.
Give it a try, you have nothing to lose.
................................jonny
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Renee
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Re: Chronic Sufferer
« Reply #6 on: Mar 21st, 2004, 10:29pm » |
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Freddy,
I've yet to find a narcotic that will stop the pain. The demerol/phenergan mix injection will put me to sleep but I wake with another CH.
Can someone tell me if there is an extended release narcotic out there that is stopping the pain? That would be SO nice.
hang in there PA man and stay around here. when you can't hang any longer, someone here will hold you up!
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Karla
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Re: Chronic Sufferer
« Reply #7 on: Mar 21st, 2004, 11:35pm » |
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I have been chronic for 6 years. Nothing worked for me so I went on methadone 10mg am and 10mg pm. It keeped me painfree for the year I was on it however I was sleeping alot and thought that was what was causing it. So I went off of it and I am still sleeping 15 hours a day. I am now on the duragesic patch and have been on that for aprox. 6 months. I have been pain free on that at 50mcg. So there are some options out there when all else fails.
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Karla
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kissmyglass
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Re: Chronic Sufferer
« Reply #8 on: Mar 22nd, 2004, 12:39am » |
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I'm chronic & only have 2 words...Lithium & Verapimil. 
Kev
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PAMan
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Re: Chronic Sufferer
« Reply #9 on: Mar 22nd, 2004, 8:25am » |
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Thanks everyone for the replies.
I have tried both methods of O2 intake. The problem I have is that my body quickly becomes immune to things. As I was first using O2, I could feel my CH mutate and change on me. I know that sounds funny, but it always does. What works today, will definately not work 3 weeks from now. The Varapamil I took in much lower dosages than you all mention. I will try something more. Personally, I did not like the side-effects, but I have to try more. But I am more interested in the cocktails mentioned. The hard part is convincing my Doc to prescribe it.
Has anyone, with abortive medications, had this problem? When I take them, yes it typically stops the CH, but after stopping them for several days, a gigantic one hits that nothing can stop. The pain is much worse than the normal daily ones. Definatley a 10 on the scale. It is almost as if the body says it must have one in full effect.
Again, thanks everyone. I think I am going to enjoy this site. Power to the Internet! I am so tired of reading pamplets from HC companies and I am glad I found this site. I just do not know why it does not come up in the search engines very well. Oh well. Take care...
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Luke63
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Re: Chronic Sufferer
« Reply #10 on: Mar 22nd, 2004, 8:38am » |
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PA Man...Drop me a line. Im in Pittsburgh too....wow another clusterhead in my neighborhood...cool!!! Take care man...Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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UN_SOLVED
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Re: Chronic Sufferer
« Reply #11 on: Mar 22nd, 2004, 8:40am » |
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on Mar 21st, 2004, 10:02pm, jonny wrote:
Tell the Doc you want to try Verapamil and Lithium together, no less than 480 mgs on the Verap and 600 mgs on the Lith.
.................................jonny
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Not everyone can take this amount of Verapamil. More than 240 mg will shut me down. Low BP and heart rate. IT WAS A NO-NO
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Margi
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Re: Chronic Sufferer
« Reply #12 on: Mar 22nd, 2004, 9:38am » |
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on Mar 22nd, 2004, 8:40am, UN_SOLVED wrote:
Not everyone can take this amount of Verapamil. More than 240 mg will shut me down. Low BP and heart rate. IT WAS A NO-NO
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that's right, it is a drug that lowers BP, so folks with low BP to start would have to be careful. I know Verapamil gave Elaine quite a BP scare. But....for people with normal to higher BP, Verapamil really has been a Godsend. We've heard of folks taking as much as 920 mgs a day successfully, although neuros we've talked to have said that is the extreme limit in dosage. Mike found his success at 720mgs a day with this last cycle - he normally has BP on the high side, so it also helped with that. Cycle previous to that, he had to add in the lithium and, within 2 weeks, cycle gone.
Mike's neuro suggested he supplement the verapamil with magnesium and that really did help the...uh...binding effect of the drug. Plus, magnesium also helps with headaches of any kind, maybe even clusters.
You're right, though, Unsolved, verapamil is not for everyone.
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| « Last Edit: Mar 22nd, 2004, 9:38am by Margi » |
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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BobG
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Re: Chronic Sufferer
« Reply #13 on: Mar 22nd, 2004, 10:54am » |
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Quote:| I am glad I found this site. I just do not know why it does not come up in the search engines very well. |
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Huh? What search engine are you using? Type clusterheadaches in Google or Yahoo and it comes up at the top of the list every time.
If the meds are failing you there is an alternative treatment that has worked for many. Search around for 'clusterbusters'. I don't have the link but I'm sure someone else can post it here.
Welcome to the board.
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KevinD
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Re: Chronic Sufferer
« Reply #14 on: Mar 22nd, 2004, 12:22pm » |
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Chronic here as well. I'm 28 with ch for the last 8 years, chronic for the last 3. Verapimil worked for over 2 years and then stopped. I then tried topamax....didn't work. Went on a lithium, verap combo which worked ok. I stopped the verap part of the combo and I seem to be doing much better the last 2 months. Its easy for some of us to build up a tolerance to these drugs. I am going to see my new neuro to discuss treatments in the event that Lithium becomes ineffective. Don't give up, there are other options. Some people do not think some of the treatments are a good idea. Do some research. There are some groundbreaking treatments still in the beginning phases. I believe the deep brain electrical stimulation is our best option. There could be some risks involved but when you're in pain for 20 years, I think its time to take some.
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Re: Chronic Sufferer
« Reply #15 on: Mar 22nd, 2004, 12:35pm » |
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on Mar 22nd, 2004, 12:22pm, KevinD wrote:| I believe the deep brain electrical stimulation is our best option. |
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This is still not available in the US...yet.
Dr. Todd Rozen from MHNI and doctors from the Cleveland Clinic are working on possibly letting me be the first in the US.  Needs FDA approval.
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miapet
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Re: Chronic Sufferer
« Reply #16 on: Mar 22nd, 2004, 1:14pm » |
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D is about 20 years chronic for almost the entire time . . .I think he got a short break a longggggggggggg time ago . . .anyway . . .he has the same problem with the drugs only working for a little while. The one sure thing (for us) is, what works today won't tomorrow . . .anyway, as far as doctor's and their scripts.
The clusterbuster url is: www.clusterbusters.com
*positive energy and light*
miapet
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| « Last Edit: Mar 22nd, 2004, 1:31pm by miapet » |
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Clusterbusters Rock
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Luke63
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Re: Chronic Sufferer
« Reply #17 on: Mar 22nd, 2004, 3:20pm » |
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Hey miapet....this guys from my town in pittsburgh....maybe we'll get to bang heads for real huh?
P.S. tell your hubby...VIBES...VIBES!!! Luke 
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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jonny
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on Mar 22nd, 2004, 8:40am, UN_SOLVED wrote:| Not everyone can take this amount of Verapamil. More than 240 mg will shut me down. Low BP and heart rate. IT WAS A NO-NO |
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I could have sworn I started out my post with him talking to his Doc.
...........................jonny
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Margi
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Re: Chronic Sufferer
« Reply #19 on: Mar 22nd, 2004, 4:02pm » |
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on Mar 22nd, 2004, 3:43pm, jonny wrote:
I could have sworn I started out my post with him talking to his Doc.
...........................jonny
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You did. Any doc that would prescribe verap to someone with pre-existing low BP should be replaced. 
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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miapet
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Re: Chronic Sufferer
« Reply #20 on: Mar 22nd, 2004, 4:29pm » |
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vibes back at ya luke! A couple of days ago, D was able to meet a local clusterhead . . .it was really good for him to be able to talk to someone who REALLY understood! miapet
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Luke63
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Re: Chronic Sufferer
« Reply #21 on: Mar 23rd, 2004, 8:19am » |
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Mornin PAMan.....how are ya doing? You've been quiet on here...everything ok? Drop me a line..remember I'm in Pittsburgh too....Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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Pinkfloyd
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Re: Chronic Sufferer
« Reply #22 on: Mar 24th, 2004, 2:20am » |
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on Mar 22nd, 2004, 4:02pm, Margi wrote:
You did. Any doc that would prescribe verap to someone with pre-existing low BP should be replaced. |
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Please don't anyone read into this any more than what I am actually saying here but.....I guess it would be difficult to fire him, if the patient died!! 
PF
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PittsburghJoe
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Re: Chronic Sufferer
« Reply #23 on: Mar 24th, 2004, 5:44am » |
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Hey PAMan and Luke, another Pittsburgher here. Maybe a triple head-bang is in order!
Man, did I get hit overnight... and took my last trex pill, too. Gotta talk my doc into the injections, preferably the vials. I just left my job, so my insurance is only good for another week... hope the beast leaves about the same time.
Getting my first O2 tank this week after being episodic almost 20 years now... yippee!
Joe
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Nothing worth having comes without some kind of fight. Gotta kick at the darkness till it bleeds daylight. - Bruce Cockburn, "Lovers in a Dangerous Time"
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Charlie
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Re: Chronic Sufferer
« Reply #24 on: Mar 24th, 2004, 2:55pm » |
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Sorry so many have to deal with this horror. MDs can be a pain. We know more about CH than almost all of them. Some of us have doctors that will play ball and a least consider our suggestions. The neurologist that sent you home is a real yutz. I had this thing for 22 years and once had to see another to get a Inderal refill. He wouldn't listen to me or what my regular neurologist said. He tried to get me to have exploratory brain surgery. The thing is, if I hadn't been experienced with neurologists because of epilepsy, I'd probably have let this ghoul carve me up. I cringe when I think of how many without some prior knowledge of these strange specialists, fall victim to these creeps.
Look around here and elsewhere for some help finding a decent doctor. Most of them really want to help but CH is frustrating for them too.
Here is a technique that was very effective for me:
http://www.netsync.net/~charlies/
Charlie
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