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Topic: Blake & Topomax.... (Read 578 times) |
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Jackie
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Blake & Topomax....
« on: Oct 1st, 2003, 12:16pm » |
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Blake is chronic. He's been on many different drugs both preventatives and abortives. He was on prednisone for almost 4 years. He takes Verapamil & Lithium daily and has for many years. We're not sure that it prevents anything because he still has attacks almost daily...to some degree.
Now....he finished tapering off the prednisone (which took 6 months). He was completely off prednisone and starting into 'high cycle'. We were horrified at having nothing much left in the arsenal. So we asked the doctor to write a script for Topomax. We had not tried that one before. IT'S WORKING.....  He is having one heavy shadow late afternoons and it is not turning into Ch most days. He is having one CH early evening but it is much easier to get rid of now. This, to us, is a miracle...last 'high cycle' he was getting hit 10 to 12 times per day.
The reason for this post.....
If you haven't tried Topomax it might be worth a try. Blake has had minimal side effects. It is reported that if the dose is started low and increased slowly the side effects can be minimal. However, I'm sure it still depends on the individual.
Jacks 
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| « Last Edit: Oct 1st, 2003, 2:48pm by Jackie » |
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Margi
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Re: Blake & Topomax....
« Reply #1 on: Oct 1st, 2003, 12:22pm » |
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YAY!!!!!
good things happen to good people!!
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ave
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Re: Blake & Topomax....
« Reply #2 on: Oct 1st, 2003, 12:23pm » |
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Lady, I am so happy for you and Blake.
Here's hoping it lasts!
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There is a break in reality. Do not adjust your mind.
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Woobie
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Re: Blake & Topomax....
« Reply #3 on: Oct 1st, 2003, 12:26pm » |
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Blake deserves a break ....
I'm very happy for BOTH of you!!
Tina 
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BarbaraD
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Re: Blake & Topomax....
« Reply #4 on: Oct 1st, 2003, 1:17pm » |
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This is great. Topomax has been my miracle drug since 1999. Glad to hear it's working as well on Blake.
Expect a "break-thru" occasionally, but those you can handle.... Just be thankful for the "remission" NOW you can have a life.... WhenI found it - I'd forgotten what it was like to have one.
Hugs BD
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Ree
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Re: Blake & Topomax....
« Reply #5 on: Oct 1st, 2003, 1:20pm » |
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Jacks that is how we felt when we found Neurontin...... Awesome~~~!@!!!!! I am so happy for you both.................. keep up the good work and don't get discouraged... make sure he doesnt go off like Dave tries to do every now and then.................... love ya Ree
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Virginia
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Re: Blake & Topomax....
« Reply #6 on: Oct 1st, 2003, 1:24pm » |
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Thanks for posting this Jackie. When I go for my follow up with my neuro, I will ask him about Topomax.
I'm so happy for Blake! There is hope out there, we just have to keep trying to find what works for us!
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The Clusterhead formerly known as 9erfan.
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BonnieW
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Re: Blake & Topomax....
« Reply #7 on: Oct 1st, 2003, 1:43pm » |
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That is great news Jackie - I am so happy for Blake and for you too!
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Melissa
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Jackie that's wonderful!!! I am so happy for Blake! ;D I pray that this lasts for him...
love,
 mel
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Peppermint
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Re: Blake & Topomax....
« Reply #9 on: Oct 1st, 2003, 1:58pm » |
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There's HOPE.. THAT IS WONDERFUL JACKS!!
I'm so glad for you!
Goofy
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Jimi
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Re: Blake & Topomax....
« Reply #10 on: Oct 1st, 2003, 2:27pm » |
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ME TOO!
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jonny
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ROCK-N-ROLL!!!!!!
Good for you, Blake...nice work, Jacks ;D
.........................................jonny
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2late
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Re: Blake & Topomax....
« Reply #12 on: Oct 1st, 2003, 2:53pm » |
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FUCKENEH! it's good to hear your gettin' relief......topamax freaked me out @ 75mg a day.....glad it's workin' for someone! ...............Jack
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Charlie M
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Re: Blake & Topomax....
« Reply #14 on: Oct 1st, 2003, 4:07pm » |
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THAT GREAT NEWS.
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OneEyeBlind
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Re: Blake & Topomax....
« Reply #15 on: Oct 1st, 2003, 4:10pm » |
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I'm smiling big time at this post. Good things do happen to good people. I hope it lasts for a million years !!!!!!!!!! Rock on !!!!!!!!!!!!!!!!!
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Jackie
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Re: Blake & Topomax....
« Reply #16 on: Oct 1st, 2003, 5:49pm » |
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We appreciate all the well wishes. Blake read them and is smiling from ear to ear. He says THANK YOU!!!
See Cat's convention report.....Dr. Bigal reportred that a small clinical study had been conducted using Topomax as a preventative for CH and was found to be effective. He recommends starting at 15mg and increasing the dosage by 15mg per week.
Like I said before....it might be worth a try.
Hugs,
Jacks
Oh, Barbara.....I didn't mean to imply that Blake was in remission or even pain free. He is still getting hit once a day but it is such an improvement we are thrilled!!
As to having a life.....we've refused to not have one...no matter what we do the best we can and still sneak in some good times...
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Prense
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Re: Blake & Topomax....
« Reply #17 on: Oct 1st, 2003, 5:53pm » |
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Great news Jackie!
I had a bad run with topomax, but it was due mainly to the way the doc prescribed it to me. It may be in my future as the verapamil isn't working still. Thanks for the update on Blake. ;D
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TxBasslady
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Re: Blake & Topomax....
« Reply #18 on: Oct 1st, 2003, 8:11pm » |
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Hi Jacks, gf.....
Tell Blake if he keeps gettin better I will have to come up there and check out those clear water lakes !!! ;D
Ahhhh...I see you peekin, Blake.....LMAO
Love that smile
My love to both of you.......Enjoyed the phone call today!
( Both of them )
Jean ( who is goin fishin with Blake )
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TxBasslady
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Re: Blake & Topomax....
« Reply #19 on: Oct 1st, 2003, 8:16pm » |
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;D ;D ;D
Hey Blake....if we can't find any fish, maybe we could find a Judge or 2 we could shoot !! ??? I mean, ya know, maybe we could go skeet shootin'...LMAO
Jean (who is sendin you lotz of pf vibes from Texas)
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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cootie
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Re: Blake & Topomax....
« Reply #20 on: Oct 1st, 2003, 10:42pm » |
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That is great news ta hear Jacks......hope it continues to work !! Brad's new doc told us topomax has shown good results and to consider it next cycle. Pam that says paxil bad neurontin bad ( that's jus fer me)
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UnsolvedEquation
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Glad it's working for you.
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nancyc
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Re: Blake & Topomax....
« Reply #22 on: Oct 1st, 2003, 11:09pm » |
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I am beggin my doc to put me back on topamax next month and give me something to fight the side effects i had...my arms and hands going numb at nite...It worked so well for me too....Johnson and Johnson sent me a registered letter today asking my Doctor to document my side effects ...They are really keeping up with the side effects of Topamax....I did not really have that many side effects this time till I had been on it for a year...When I took it before, I just could not adjust to the Dopey feeling of it..this time that did not bother me..They also say it is a great weight loss drug at higher doses LOL....Tell Blake to stick with it ...I am so so happy for him....smiles,nancyc
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stuey
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I'm glad for Blake and for you. I tried it and couldn't tolerate it. I tried it for epilepsy and when I got up to 200 mg I was way too sluggish and tired all the time. I am glad it's working for him though.
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Jackie
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Re: Blake & Topomax....
« Reply #24 on: Oct 2nd, 2003, 7:05pm » |
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I'm almost scared to say this out loud...... 
Blake DID NOT have one HA last night.....not one!!!!
We're going for night #2....
I swear there's something to that Topomax....
This is the best he has been in a long time.
Jean...Blake says, "Come on, honey"....he'd be really happy to show you these norhtern Indiana gin ponds.
He's say you two are going fishing and I have to take care of the judges on my own. Apparently they don't care if I put a little shot in them... ;D
But.....he thinks you probably won't come...he's still waiting on his other CH girlfriend, Elaine, to show up.... 
Jacks
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