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Title: Blake & Topomax.... Post by Jackie on Oct 1st, 2003, 12:16pm 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..... :D 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 8) |
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Title: Re: Blake & Topomax.... Post by Margi on Oct 1st, 2003, 12:22pm YAY!!!!! good things happen to good people!! ;D |
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Title: Re: Blake & Topomax.... Post by ave on Oct 1st, 2003, 12:23pm Lady, I am so happy for you and Blake. Here's hoping it lasts! |
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Title: Re: Blake & Topomax.... Post by Woobie on Oct 1st, 2003, 12:26pm Blake deserves a break .... I'm very happy for BOTH of you!! Tina :-* |
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Title: Re: Blake & Topomax.... Post by BarbaraD on Oct 1st, 2003, 1:17pm 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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Title: Re: Blake & Topomax.... Post by Ree on Oct 1st, 2003, 1:20pm 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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Title: Re: Blake & Topomax.... Post by 9erfan on Oct 1st, 2003, 1:24pm 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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Title: Re: Blake & Topomax.... Post by BonnieW on Oct 1st, 2003, 1:43pm That is great news Jackie - I am so happy for Blake and for you too! |
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Title: Re: Blake & Topomax.... Post by Melissa on Oct 1st, 2003, 1:57pm Jackie that's wonderful!!! I am so happy for Blake! ;D I pray that this lasts for him... love, :)mel |
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Title: Re: Blake & Topomax.... Post by Peppermint on Oct 1st, 2003, 1:58pm There's HOPE.. THAT IS WONDERFUL JACKS!! I'm so glad for you! Goofy |
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Title: Re: Blake & Topomax.... Post by Jimi on Oct 1st, 2003, 2:27pm :D ME TOO! :D |
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Title: Re: Blake & Topomax.... Post by jonny on Oct 1st, 2003, 2:43pm ROCK-N-ROLL!!!!!! Good for you, Blake...nice work, Jacks ;D .........................................jonny |
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Title: Re: Blake & Topomax.... Post by 2late on Oct 1st, 2003, 2:53pm 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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Title: Re: Blake & Topomax.... Post by Mastifflvr28 on Oct 1st, 2003, 4:05pm whoooo hoooo and fuckeneh!! Mast |
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Title: Re: Blake & Topomax.... Post by Charlie M on Oct 1st, 2003, 4:07pm THAT GREAT NEWS. ;D |
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Title: Re: Blake & Topomax.... Post by OneEyeBlind on Oct 1st, 2003, 4:10pm 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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Title: Re: Blake & Topomax.... Post by Jackie on Oct 1st, 2003, 5:49pm 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 8) 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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Title: Re: Blake & Topomax.... Post by Prense on Oct 1st, 2003, 5:53pm 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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Title: Re: Blake & Topomax.... Post by TxBasslady on Oct 1st, 2003, 8:11pm ;) 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 8) 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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Title: Re: Blake & Topomax.... Post by TxBasslady on Oct 1st, 2003, 8:16pm ;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) 8) |
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Title: Re: Blake & Topomax.... Post by cootie on Oct 1st, 2003, 10:42pm 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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Title: Re: Blake & Topomax.... Post by UnsolvedEquation on Oct 1st, 2003, 10:49pm Glad it's working for you. ;D |
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Title: Re: Blake & Topomax.... Post by nancyc on Oct 1st, 2003, 11:09pm 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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Title: Re: Blake & Topomax.... Post by stuey on Oct 2nd, 2003, 10:25am 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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Title: Re: Blake & Topomax.... Post by Jackie on Oct 2nd, 2003, 7:05pm I'm almost scared to say this out loud...... :P Blake DID NOT have one HA last night.....not one!!!! :D We're going for night #2.... I swear there's something to that Topomax.... :D 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 8) |
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Title: Re: Blake & Topomax.... Post by Lori on Oct 3rd, 2003, 10:10am This is great news! I get excited when I read how topomax is helping, especially chronics that couldn't find reliefin other things. I am episodic and used topomax and verapamil and that was the first cycle ever I was not in major pain! The side effects I didn't like, but maybe I need to be started on a lower dose next time. Thanks for adding that bit of info! That just may make a major difference for many who try it. I am so glad though for you guys! |
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Title: Re: Blake & Topomax.... Post by Elaine on Oct 3rd, 2003, 4:20pm Blake as soon as this baby can talk well enough to tell someone he is hungery and needs something, I am stuck at home. You will see me, I will show up one of these days I promise. I will be a old lady by then! You and Txbasslady and Jackie just go on and fish and have a great time! ;) You and I have a great open relationship ;) |
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Title: Re: Blake & Topomax.... Post by Ree on Oct 3rd, 2003, 10:06pm Jackie I am reading through this saying thank you God what a wonderful gift to you for all that you have been through to even have one pain free night... I hope you have many many more and get to make up for lost time spent suffering together... you guys sound so cute... love ya you are one great supporter and friend to so many Ree |
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