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Topic: Anybody here a wise old soul? boring Dilemma. (Read 341 times) |
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Apple
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Anybody here a wise old soul? boring Dilemma.
« on: Apr 27th, 2005, 3:57pm » |
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I've got a boring, complicated dilemma. I've been on Topamax and a few other things for a severe migraine problem with cluster features. I also have a mild case of Fibro. and some other health issues. In addition to this, I have an adopted child who is VERY DIFFICULT (wont go into details). She is a handful. Hubby works two jobs to take up the slack and is a delight. He is my saving grace. I've always worked part-time, but two years ago, my migraines and health deterioriated so badly that I went on disability. (Like many folks...life is complicated). The Topamax has caused me to have WEIRD cognitive problems that make it difficult to return to work. For example, I have BIG problems learning driving directions, learning any new computer programs, remember phone numbers or names, doing ANY math beyond addition. My fear is if I were to return to work I would look like A COMPLETE IDIOT! Example: we got a new fax number at our home two years ago, and I still can't recall the number even though I have tried. I was a straight "A" student in college and use to have self confidence. For the last month, my migraines have improved. I'm a very proud person and have been kicking myself that I'm not working at this time...but of course it's only been a rather short time that things are better (not perfect by any means). But, I would have to take a job much below my normal abilities because the Topamax is just interferring so badly with my brain function. My husband says to DUMP IT and see a pain management guy. He says to start over. I've waited two years + to do better, and I'm fearful of starting over. But my self esteem is in the dumper feeling stupid and afraid like this. I'm at a crossroads. When I've tried to lower the Topamax in the past, all hell breaks lose and I get daily migraines again. Has anyone been in this predicament? What are my options? BTW, Verapamil made my migraines worse. Should I consider retraining and stay on disability until this is completed? Should I dump the Topamax? Again, any thoughts?
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I don't have CH, I have horrible migraines. Doc says they have "cluster features." Can I still stay? Migraines suck. Can I say that?
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kimmeesue
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #1 on: Apr 27th, 2005, 4:18pm » |
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Hi Sweetie,
Sorry you are feeling so low.
I wouldn't consider myself a wise old soul but I have been in your shoes. I am on Topamax and have experienced the memory defecits. I, too am on disabiity, although for other reasons, and I went through the self-esteem quandry. We live in a society, unfortunately, which equates your personal value with your financial productivity. Took me awhile to get past that. My family has been supportive and that has made it possible for me to survive and grow as a non-employed though very productive person.
It's a decision only you can make. Just make it for the right reasons for you and your family.
Best wishes,
Kim
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Kris_in_SJ
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #2 on: Apr 27th, 2005, 8:22pm » |
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OK - I'm old, but not necessarily wise. From what I know of its side effects, Topomax is a simply horrible drug. Yes, it helps the headaches for many, but what's the trade-off? A college graduate who can't do anything more than simple addition? There has to be something better.
Each and every day, I thank my higher power for simply giving me episodic cluster syndrome instead of what some of you suffer. My heart goes out to you.
Were I you, I'd consider a new doc, new drug therapy, or maybe even clusterbusters. I'm not sure about shrooms and migraines, but it might be worth investigating.
Wish I had more words of wisdom. PF wishes, sweetie!
Kris
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Tara Ann
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #3 on: Apr 27th, 2005, 10:10pm » |
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Not a wise old soul and not on what I've heard called Dopeymax but I do have trouble thinking and remembering with or without meds. I also have fibro and migraines and clusters and now possibly lupus. I'm only 28 and can barely remember my own phone number. I lived here 6 months before I didnt have to double check my address before I gave it. How are you sleeping? I think its the sleep deprivation and the non refreshing sleep (when it does occur), the stress of having illnesses too. I understand your predicament. Just notes notes and more notes is my advice.
Hugs and vibes it all gets better for you.
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sandie99
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #4 on: Apr 28th, 2005, 3:46am » |
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Topamax IS dopeymax or stupimax. It did nothing good to me... I actually found myself in a record store without recalling what I was doing there! 
But I think you should consider whether pros top cons. It seems to be that you have lots of more cons than pros... In my case I got 11 CH attacks/day among other things. I quit it as soon as I could. That was this time last year and I have not missed dopeymax since.
Talk to your doc about options. What helps one clusterhead, doesn't help another. Kudzu helps lots of us. I've found that verpamil 600mg keeps my ch in control.
I wish ya the best of luck! 
Best wishes,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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BarbaraD
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #5 on: Apr 28th, 2005, 5:44am » |
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I was on topamax for several years. Had some memory loss, but learned to write post-it notes -- it kept the headaches at bay and that was the good part.
You didn't say what dosage you were on. I leveled out at 100mg most of the time -- only raised the dosage when I got breakthrus.
My neuro took me off topamax and put me on Zonagram for a while (he said it was like topamax without the side effects), but one of the side effects of the Zonagram was vertigo and it hit me bad, so I went back on topamax.
You might talk to your neuro about Zonagram - we all get different side effects from different meds. It might just work for you without the side effects.
These meds we all take are a crap shoot at best. Some of us tolerate some things while others don't. But we're all desperate to get relief from the pain, so we keep trying. At the time I found topamax it was my miracle drug (and was for several years until it quit working).
One thing you might try is taking the whole dose at night before bed. Not the way it's recommended, but it worked for me that way.
Good luck and hugs BD
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nani
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #6 on: Apr 28th, 2005, 10:04am » |
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Apple, have you looked at the kudzu threads? It is proven to be about 80% effective on migraines. Take a look at all the info. Check for meds interactions and maybe you'll want to try it. Good luck to you, hun. PM me if you want to discuss it (or difficult children) more.
Hugs, nani
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rickyshot
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #7 on: Apr 28th, 2005, 1:37pm » |
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Ditto for the Kudzu. It has improved my migraines by 80%. I took the topomax and almost committed suicide. I was in complete phychosis. I never had an experience like that in my life from meds. BTW my migraines are very complicated I even suffered a TIA from them (mini stroke). I take two capsules of kudzu in the am and two in the pm. The whole shit costs me almost 80.00 a month and is not covered by insurance sigh...Thank God I can do it because I swear it is the only thing that has controlled these migraines. I just started it in January. I suffer episodic CH as well and the jury is not in on that one for me yet. When I do get a migraine I take, my migraine meds as well which can be anything from Fiorinal to Imitrex depending on the severity. Sometimes I get no relief but I am a functionining person at present. Keep in mind there is no cure for migraines or CH yet. All these things are controls.
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Apple
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #8 on: Apr 28th, 2005, 4:39pm » |
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Thanks everyone. BTW, I LOVE this board! Something about you cluster folks that is very down to earth. No pretenses. I like that. Anyway, I take a weird dosage...175 mgs. 200 mgs. and I'm a drooling idiot. 150 mgs. and I get daily migraines. 175 mgs. is my sweet spot pain wise...but I have cognitive dulling. The deal is, VERY, VERY RECENTLY and I can't stress that enough, I've gotten only one migraine a week. Granted, the weather has been BEAUTIFUL around here and my periods have been better. Could that be it? So, maybe I should shut the hell up! Before Topamax, I was a freakin disaster, with bad migraines almost daily. I was totally disabled. Then for a LONG TIME, even with Topamax, I was getting about three migraines a week. All of a sudden, things are good...but like I said, it's only been about three weeks now.
What's the deal with Kudzu? Where do I buy it? The health food store? What dosage is typical to start with? Side effects? BTW...I may not be able to take Zonegran...I can't recall the exact reason).
Thank you again.
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I don't have CH, I have horrible migraines. Doc says they have "cluster features." Can I still stay? Migraines suck. Can I say that?
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mynm156
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Re: Anybody here a wise old soul? boring Dilemma.
« Reply #9 on: Apr 28th, 2005, 6:14pm » |
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I would say ask Doctor about Zonegran. It is another drug like Topamax yet does not have the side effects.
PF Days
MYNM156
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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