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paddleball1
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still can't work
« on: Mar 17th, 2005, 4:45pm » |
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I am currently on 240 mg of verapamil and 75 mg of topomax. I'm still getting two to three attacks each week. The topomax makes me very confused and lathargic. I haven't worked since December. Is anyone else not able to work and function normally. I've had clusters since 1967, but this is the first year that I have been hit so hard.
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Margi
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Re: still can't work
« Reply #1 on: Mar 17th, 2005, 4:52pm » |
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two to three attacks a WEEK? Are you sure what you've got is cluster headache? Cluster is usually that many attacks a day. How long do your attacks last? Have you taken the quiz in the button on the left?
That's a realtively low dose of verapamil for clusters.
Don't mean to judge, just trying to help, ok?
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Sophie
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Re: still can't work
« Reply #2 on: Mar 17th, 2005, 5:03pm » |
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I had to give up working this year---just couldn't take it anymore. There are some other issues on top of CH---but I'm trying to get thru til SS kicks in this fall. There are links on this site that help with filing for disability---someone else will have to direct you because I don't remember where I saw them. I should have gone that way but I'm tired of the hassels. Paperwork gives me a headache. Sophie 
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Cluster Buster
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Sean_C
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on Mar 17th, 2005, 4:45pm, paddleball1 wrote:| I'm still getting two to three attacks each week. I've had clusters since 1967, but this is the first year that I have been hit so hard. |
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I think you have adrenalitis.
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Bob_Johnson
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Re: still can't work
« Reply #4 on: Mar 17th, 2005, 7:37pm » |
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Your frequency of cluster attacks is within the range of "normal". But your dose of Verap is on the low side and there are viable alternatives to Top. if, as is too common, the side effects are difficult.
Suggest you review this with your doc:
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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E-Double
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Re: still can't work
« Reply #5 on: Mar 17th, 2005, 7:37pm » |
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I'm thrilled that I'm down to 2-3 per day.......
Work is something that you have to push yourself to do! Period!
I'm trying so very hard as of late to stay afloat as many are......Keep telling myself "It will pass" It is what it is.....
The only thing I can tell you for sure is that Dopeymax F'ed me up!!! Forgetful and depressed...Just plain lost and did nothing for the HA.....
Good luck on your quest but make sure your "clusters" do not consume you!!!
E.
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I can't believe that I have to bang my
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Kris_in_SJ
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Re: still can't work
« Reply #6 on: Mar 17th, 2005, 8:21pm » |
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Hi,
Get the Verapamil up to at least 480mg/day and get off the Topomax. Frankly that stuff scares me. Never had to try it, but so many here have the same bad side effects as you are.
I'm no doctor, just a sufferer like you, so you obviously need to talk with you doc about this before you do anything drastic with your meds. Follow the link Bob gave you, print it out and show it to your doc. It saved my life last cycle!
Many Hugs,
Kris
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jokrs2
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Re: still can't work
« Reply #7 on: Mar 17th, 2005, 8:23pm » |
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I have been on total disability for 14 years as my wife said,"I can't handle the rollercoaster of work instability".
So we decided she'd work outside the home and I stay home  . It took a long time to get used to, and I still dream about going back to work, but right it is just a dream. I have several other chronic ailments that make work impossible for me. So I pray that in your case the cycle ends, the beast goes back to hell where he came from and you are able to resume your life as pain free as possible. Best wishes, Joe
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Jonny
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Re: still can't work
« Reply #8 on: Mar 17th, 2005, 8:26pm » |
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on Mar 17th, 2005, 4:52pm, Margi wrote:two to three attacks a WEEK? Are you sure what you've got is cluster headache? Cluster is usually that many attacks a day. How long do your attacks last? Have you taken the quiz in the button on the left?
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Major Ditto!
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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.
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Kris_in_SJ
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Re: still can't work
« Reply #9 on: Mar 17th, 2005, 8:42pm » |
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Margi and Jonny - don't automatically rule out clusters here.
When my cycle starts, it starts out slowly with 3-4 HA/week, ramps up to 1 a day, then to 2/day. By then I'm heavy on the Verap and I've never had more than 2 a day. Once the Verap kicks in, the HA's ramp down the same way.
Paddleball is only saying that he's STILL having several a week even with meds. To me that just says he needs more or different meds. It doesn't say he's not a clusterhead.
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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unsolved1
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I only wish I had 2 - 3 attacks per week
Unsolved
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vietvet2tours
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Re: still can't work
« Reply #11 on: Mar 17th, 2005, 10:46pm » |
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When I cycle it's six a day one hour each for thirty days.
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Roxy
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Re: still can't work
« Reply #12 on: Mar 17th, 2005, 11:33pm » |
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on Mar 17th, 2005, 8:26pm, Jonny wrote:
Major ditto ditto.......
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Mr. Happy
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Re: still can't work
« Reply #13 on: Mar 17th, 2005, 11:48pm » |
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You filthy chronics drive me crazy. I'm replacing my Mouse Condom immediately, and spraying the whole system down with alcohol.
Paddleball....you haven't mentioned O2 yet. There's tons of options open to you. Your current cocktail obviously isn't cutting it. Be agressive in your treatment.
You are your own best advocate.
RJ
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sandie99
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Re: still can't work
« Reply #14 on: Mar 18th, 2005, 4:07am » |
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My verapamil is up to 600mg/day. And topomax made me a living zombie - and it gave me 11 CH attacks a day, which is my personal worst. 
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judkins
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Re: still can't work
« Reply #15 on: Mar 18th, 2005, 6:16am » |
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I am on my 5th week of not being able to work. At the minute I'm getting hit about 4 to 6 times a day and always at night. Totally knackered. Waiting for appointment to see neuro again to go on Oxygen. Also going to start Verapamil. Get scared sometimes that I won't be able to work again.
This last cycle has been a real shock to my system!! Got this scary notion that I may have become chronic. 
However I will try not to jump to any self diagnosis until I see the neuro.
Wishing you all PFDN's 
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Todays agenda..... get through it !!!!
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maffumatt
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Ive never missed a day because of Ch, most of mine are at night but my daytime hits are hard hitters. The only days that I missed was the dental appointments that turned out unnecessary. 3 a night and one a day, two or three times a week.
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don
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Quote:Work is something that you have to push yourself to do! Period!
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Thats it in a nutsehell. 28 years of CH and never out of work because of it.
You have to manage and adapt.
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judkins
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Re: still can't work
« Reply #18 on: Mar 18th, 2005, 7:49am » |
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Guys I hear what you're saying and I take your comments on board. Up until a few weeks ago I never lost a days work in over 30 years. I think I'm just a little scared at the minute cos I've never had a cycle this beastly. Still trying to remain positive and hope to be back at work soooon.... I feel guilty now 
Praying for PFDNs for us all.
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Todays agenda..... get through it !!!!
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seasonalboomer
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Re: still can't work
« Reply #19 on: Mar 18th, 2005, 9:48am » |
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If there's one thing this site gives you is perspective. Your hell could be someone else's walk in the park. Pain you could have shrugged off years ago, suddenly shakes you to your core. While the KIP scale offers some relativity for coming to some agreement between each other, it doesn't delve into how each of us personally handles and experiences our pain from cycle to cycle.
Read Read Read -- there are people on this site that are putting up information that is allowing them to FIGHT. There are people using treatments that you have not indicated you have tried that is giving them the power to get back their quality of life. don't let yourself get rolled over by these things. If you can't get a doctor to get you what these folks are doing --- get another doctor. If your insurance won't pay for it, pay for it yourself. Anything but losing hope or giving away your life to sit waiting for the next one.
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Sophie
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Re: still can't work
« Reply #20 on: Mar 18th, 2005, 2:34pm » |
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Just a little follow up---I never missed a days work because of CH either. I was "lucky" all my visits came at night, until last year when I started doctoring and then the R/X s brought on some daytime hits. I just am so close to age 62 and can't wait to retire. I believe in doing what you want now---because maybe you won't get the chance to do it later. My dependents are all animals and they like me to be home. I guess I'm saying work really messes up my lifestyle----not the CH.
Also it's pretty easy to say, keep serching for the right Dr. and the right meds. , even if you have to pay for them yourself. The co-payments on these drugs are not even affordable, let alone paying for it all, out of pocket.
It's not right and can bankrupt a family person. Just a little reality check here! Sophie
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WHERE ARE WE GOING?
AND WHY AM I IN THIS HANDBASKET?
Cluster Buster
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seasonalboomer
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Re: still can't work
« Reply #21 on: Mar 18th, 2005, 3:06pm » |
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reality check? what makes a "family person" a "family person"? do you mean only a rich person would be able to do what I mentioned --- not giving up. some people will choose to fight the doctors and the system if it means getting what they need. giving in and saying that since your insurance won't pay it you have to give into "the beast" is ludicrous, ther are lots of options -- not all successful or consistent, but the info is on the site.
As Winston Churchhill said, "Never, ever Give In!"
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Sophie
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Re: still can't work
« Reply #22 on: Mar 18th, 2005, 3:59pm » |
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Maybe I am saying you have to be rich to be able to hunt down the right Dr. and the right med. When your medical expence is the highest monthly pay out, even more than house and utilities.
But I'm not saying give in---and I agree with Mr. Happy "you are your own best advocate".
This site has been a blessing for me---the option of things like O2---kudzu---mushrooms and who knows whats next. Nope, I'll never give in! Read, read, and self educate-----and this is the place to get some answers.
Sophie
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WHERE ARE WE GOING?
AND WHY AM I IN THIS HANDBASKET?
Cluster Buster
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