Topamax

[Captain Deb]

Hi crew!
While at Dr Silberstein's headache workshop at the sympsium in Philly, I asked him point blank which med he'd had the best results with for Post-surgery AN patients and he said Topamax (topiramate). I said I had tried this med several times and could not tolerate the side effects :weepiness, sadness, irritability, etc. He said that I needed to start with a maximum of 15 mg and titrate up very slowly over the course of several months to 150-200 mg. He said he found a lot of people can tolerate the side effects if they increase the dose very very slowly.

I went to see my headache Wizard and told him what Doc S had said and he was really impressed that Silberstein was there beause he's one of the top headache specialists in the whole wide world! ( He kissed Batty on both cheeks and made her all well!)

So he wrote me a script for Topamax 25 mg sprinkles, which I can either put in applesauce, or maybe decorate cupcakes with--and eat 1/2 the dose each day at bedtime. I hope this works!

I travelled all the way to Philly and missed 1/2 the workshops because I was in bed with a doozy of a headache that lasted all Saturday night and into about noon on Sunday--that happens when I have too much fun!

But I got to meet all kinds of great people and see my best AN buddies face to face and hug 'em all!! That was the best.

So any comments anyone has on this med would be appreciated and I'll let you know how things progress.

Be Well and Sail On!!!

Capt Deb

[Brendalu]

Capt Deb,

I have been on Topamax for seven months and it has helped.  I currently take 100, 50 am and 50 pm.  I am on my way up to 200.  The one side affect I was hoping for I didn't get.  (weight loss)  I also take lamectal and that curbs the weepies. 
I hope it works as well for you as it has for me.  I am down to one or two train wrecks a week and that is a far cry from six!
Keep me posted on how it works for you.  Remember you have to take it before the headache because it won't get rid of it once it is there.
Hugs,
Brendalu

[Static]

Hi Deb!
Well, you  know that I'm also on Topamax, currently, 150mg, 2x daily, and those headache specialists are the ones who I am trying to go and see without having to put out the $400 for the stupid psychologist exam but that's a whole other post.  Anyway, since I've been on the higher dose of Topxamax for about 3 weeks now, the sinus infection is over and I've tried to lower my stress levels, my headaches are much less than they've been in a long time and I don't get a major one every day like I used to.  Like Brendalu said, I didn't lose any weight on it either, but just losing the headaches is enough that's for sure!  Good luck with your new trial.  It may take a while for you until you get to a dose that will really work, but you have to hang in there until it does.  Until then, just try and get a good nights sleep and keep the stress down 
~Karen

[Larry]

Hi Deb,

we have discussed this before but thought I'd post. i was taking 25mg of Topomax and it started to make my eeyes watery and I couldn't risk it any further. A possible side effect of this drug is Glaucoma so those on it should make sure you get tested for this regularly. Its a pretty straight forward eye pressure test. Most optomitrists can do it.

everyone is different and I sure do hope it works for you. Looks like its having success with others and THATS FANTASTIC.

Laz

[Brendalu]

Laz,
Thanks for the Glaucoma side effect post.  I hadn't been told about that or read about that.  I have an eye appointment next week and I usually skip that test because I jump!  (I have a "thing" about stuff coming at my eyes)  I will have the test this time though.  Thanks for letting us no.  I wish Topomax had worked for you.

Brendalu

[Static]

Yeah, that's right.  I did forget to mention that my neuro told  me that if I noticed any changes at all in vision that I should call my eye doctor immediately and tell him that I'm on topamax and need to be seen ASAP.  Thanks for that reminder Laz.
~Karen

[Captain Deb]

So was on the Topamax sprinkles 25 mg and doing 1/2 of that at bed time daily for 8 days--titrated up to 25 mg the evening before last and WHAM got hit by a wave of the wheepies yesterday morning--crying jag that lasted into the early afternoon until I decided to Xanax myself. Yikes. Will I ever tolerate this drug? The best headache specialist in the world told me I should give it a shot so.....

I'm spending another week at 12.5 mg and. Will figure out a way to titrate up to 25 mg a little slower. Need to use my high school math, I guess--If you mix 25 into 1/2 cup of applescauce and eat 1/2 of that, how much do you have to eat to get 19 mg? I'll work it out--damn non-metric system!
Anyone else get such severe psycho-side effects?

I think my titration needs to be done alone at a luxury hotel in the Caribbean.(Not on a boat as I'l be yelling at the crew!)

Capt Deb

[Omaschwannoma]

This is probably going to be a wasted question but here goes.....Deb, have you tried espresso in the morning for headaches?  You know the extra boost of caffeine?  Maybe combo of your sprinkles + caffeine jolt might do something? 

[Larry]

Arushi,

Caffeine is actually a known stimulant that creates headaches rather than the other way. Sorry, but been down that road. I now have 1 coffee max per day, too many affect mee adversely. It maybe me, be interested in other views.

laz

[Captain Deb]

Ditto here on the caffeine--my Headache Wizard has me totally de-caffed, much to my chagrin. It was my drug of choice in my previous life. That and Chocolate. Needless to say I'm not quite the morning person I once was.

Capt Deb

PS Brendalu--is Lamectal generic? I could look it up but, since I've no caffeine, I'm lazy!  Also--Nice pic!

[Captain Deb]

OK I looked up Lamectil and found it to be used to treat bipolar disorder and seizures.  I've finally driven Dr Love outta the house, at least for the daytime--he's rebuilding a deck on one of our rentals. The Weepies are getting better--taking 1/2 of a Xanax when I feel them coming on-- anymore than that just puts me to sleep. I'm up to tolerating 25mg a nigh fairly well. Yay! Had a brainwreck Sat night that lasted until Monday night.  Not the shaking and crying kind, just the really agggrrrrrravating beasty. Will keep you posted.
Be well  and sail on!

Capt Deb

[Brendalu]

Lamectal is also used for mood swings and depression.  It will soon be approved for use for depression by the FDA.  I am now up to 300mg and 200 mg Topomax.  I still have migraines but not as often and not as severe.  Must be the Lamectal is so I don't get the weepies!!!
Brendalu

[Captain Deb]

 Bipolar! Hell right now I'm Tripolar!  Quadripolar! 

Actually............25mgs and holding......Dr Love back in the house most of the day yesterday without a scolding or guilt-trip laid on him once! Backing off the Neurontin a smidge so I have a little more energy.  As our Pearly Girly says, "day by day...inch by inch...."

Hugs,

Capt Deb

[Brendalu]

Got a really good one one now.....I was weeding my flower beds.........sitting down..flat on my bottom sooooooooooo I wouldn't have far to fall...not that I would anyway  I am vertically challenged.  Next day I couldn't move or breathe.  Went to see my wonderful PCP.  She said I tore muscles in the same side as my fractured hip I didn't know I had until my bone density test!  So now I am taking Darvocet (makes ya drowsey) Flexeril (makes ya drowsey), Topomax makes ya drowsey and I have narpolepsy to boot.  I am investing in tooth picks.  No weepies though!!!!
Brendalu

[Captain Deb]

I know what ya mean--I used to love to garden--now I either trip or give myself a headache. I'm hiring some pixies next year. Last year we got lazy and just threw our compst in one of our veggie beds. Now we have The Little Shop of Horrors Cucumber/Squash Garden that's Eating the Entire Driveway and Yard. Anyone want some Veggies?

Hope you feel better ya little red-headed pixie you!

Capt Deb