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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> still can't work
        
(Message started by: paddleball1 on Mar 17^th, 2005, 4:45pm)

Title: still can't work
Post by paddleball1 on Mar 17^th, 2005, 4:45pm

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.

Title: Re: still can't work
Post by Margi on Mar 17^th, 2005, 4:52pm

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?

Title: Re: still can't work
Post by Sophie on Mar 17^th, 2005, 5:03pm

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 :)

Title: Re: still can't work
Post by Sean_C on Mar 17^th, 2005, 5:19pm

on 03/17/05 at 16:45:23, 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.

I think you have adrenalitis.

Title: Re: still can't work
Post by Bob_Johnson on Mar 17^th, 2005, 7:37pm

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

Title: Re: still can't work
Post by E-Double on Mar 17^th, 2005, 7:37pm

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.

Title: Re: still can't work
Post by Kris_in_SJ on Mar 17^th, 2005, 8:21pm

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

Title: Re: still can't work
Post by jokrs2 on Mar 17^th, 2005, 8:23pm

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

Title: Re: still can't work
Post by Jonny on Mar 17^th, 2005, 8:26pm

on 03/17/05 at 16:52:36, Margi wrote:

Major Ditto!

Title: Re: still can't work
Post by Kris_in_SJ on Mar 17^th, 2005, 8:42pm

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

Title: Re: still can't work
Post by unsolved1 on Mar 17^th, 2005, 10:17pm

I only wish I had 2 - 3 attacks per week :-/

Unsolved

Title: Re: still can't work
Post by vietvet2tours on Mar 17^th, 2005, 10:46pm

When I cycle it's six a day one hour each for thirty days.

Title: Re: still can't work
Post by Roxy on Mar 17^th, 2005, 11:33pm

on 03/17/05 at 20:26:29, Jonny wrote:

Major Ditto!

Major ditto ditto.......

:-X :-X :-X

Title: Re: still can't work
Post by Mr. Happy on Mar 17^th, 2005, 11:48pm

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

Title: Re: still can't work
Post by sandie99 on Mar 18^th, 2005, 4:07am

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. :(

Title: Re: still can't work
Post by judkins on Mar 18^th, 2005, 6:16am

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 ;)

Title: Re: still can't work
Post by maffumatt on Mar 18^th, 2005, 7:04am

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.

Title: Re: still can't work
Post by don on Mar 18^th, 2005, 7:23am

Quote:

Work is something that you have to push yourself to do! Period!

Thats it in a nutsehell. 28 years of CH and never out of work because of it.

You have to manage and adapt.

Title: Re: still can't work
Post by judkins on Mar 18^th, 2005, 7:49am

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.

Title: Re: still can't work
Post by seasonalboomer on Mar 18^th, 2005, 9:48am

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.

Title: Re: still can't work
Post by Sophie on Mar 18^th, 2005, 2:34pm

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 :)

Title: Re: still can't work
Post by seasonalboomer on Mar 18^th, 2005, 3:06pm

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!"

Title: Re: still can't work
Post by Sophie on Mar 18^th, 2005, 3:59pm

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 :)