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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Reporting in / Nice Topa Side Effect
        
(Message started by: Dave_W on Jun 1^st, 2004, 3:44pm)

Title: Reporting in / Nice Topa Side Effect
Post by Dave_W on Jun 1^st, 2004, 3:44pm

Well Team,

I guess this is week 6 on Topamax. I stepped up to only about 175 mg/ day. The CH's seem to be in good control, in fact I've logged four pain-free days in a row now. Have only had a couple really bad days since starting Topa. Will be starting the ramp-down in a week if it stays this good, Doc says I should stay at 100 mg for a few weeks before trying to ramp off completely -- be sure the cycle's done and not just suppressed. Most of the side-effects have gone away except I'm still a bit sluggish and my fizzy drinks still taste like poop.

Interesting side effect just noted over the Memorial Day weekend (thanks, American Veterans!) I always had a bit of tremor in my hands, even as a teenager. Today I can hold a coffee cup at arm's length and not even make a ripple in the surface of it! My soon-to-be-ex-wife used to call me "Old Shaky." I'm only 46. But with the Topa going I can balance a pencil on its eraser end on my fingernail.

Neat-oh. Well, I'm proud to be away from the attacks for a bit. Hope the beast has had his fill of me for the year at least. Even if not, it's been a better year for the advice I got here...

Love you all!

Old Slow Dave

Title: Re: Reporting in / Nice Topa Side Effect
Post by thomas on Jun 1^st, 2004, 5:52pm

on 06/01/04 at 15:44:34, Dave_W wrote:

Interesting side effect just noted over the Memorial Day weekend (thanks, American Veterans!) I always had a bit of tremor in my hands, even as a teenager. Today I can hold a coffee cup at arm's length and not even make a ripple in the surface of it! My soon-to-be-ex-wife used to call me "Old Shaky." I'm only 46. But with the Topa going I can balance a pencil on its eraser end on my fingernail.

That is not surprising, I think and I may be wrong, but I think that it originally was an anti-siezure med, so that makes a lot of sense to me, maybe you can ramp down to a low enough dose that you can take it long term to keep from getting the shakes..........

Title: Re: Reporting in / Nice Topa Side Effect
Post by Edski_1 on Jun 3^rd, 2004, 4:06pm

Something tells me that you might be rushing to get off...

Spent three months on the stuff, and stopped basically because of $$...got laid off a week after I started on Topa. It did great, and after about 6 weeks I was basically PF...stayed on for about 6 weeks longer than I thought the cycle was "broken".

After about 6 weeks off of Topa the CH's started to return. Not sure if it's the same cycle coming back, or it it's a new cycle...I'm suspecting that I really didn't "break" the last cycle, but the CH sysmptoms are not the same. For one thing, I seem to get the CH on alternating sides of my head now, and have even had a couple shadows "switch" sides...

Just from my little experience I'd suggest staying at the high dose for at least 2 months, then tapering down slowly...but of course this might be dependent on the cycle length...I suspect I have a very long cycle.

Title: Re: Reporting in / Nice Topa Side Effect
Post by Rock_Lobster on Jun 3^rd, 2004, 5:26pm

Agreed with Ed... stay on it a while.

Topa 'broke' my episode. Stayed on it about 4 weeks past my last CH. Had 3 PF weeks without any meds.

Now another epsisode just started, about 2 years ahead of schedule. >:( Man, am I pissed.

Keep on the Topa... cannot say how long, but I plan to try 2 months past last CH this time.

Good luck!
Rock

Title: Re: Reporting in / Nice Topa Side Effect
Post by UN_SOLVED on Jun 3^rd, 2004, 9:18pm

Glad someone is finding some relief.

I took Topomax for almost a year. I was "Old Shakey" !! Forget about eatin' peas ! It wasn't happenin'. I was dumber than a box O' rocks ! [smiley=confused2.gif] [smiley=confused2.gif]
Then came the STONES. TWICE. Surgery the first time.

Never did help with the headaches.

I'll pass on it.

PFW
Unsolved

Title: Re: Reporting in / Nice Topa Side Effect
Post by TxBasslady on Jun 3^rd, 2004, 11:02pm

It's always great news when one has PF time.

Really happy that the Topomax worked for you, Dave.

It really would be neat if the same shit worked for all of us. Guess it would be so much easier to deal with.

A real mystery to me......we all have CH....but the meds just don't work the same for all of us.

PF vibes,

Jean

Title: Re: Reporting in / Nice Topa Side Effect
Post by mynm156 on Jun 6^th, 2004, 4:13pm

Right On!! Good for you.

I wish it could help us all but alas I am one of those ppl who gets nucking Futs on Topa.

MYNM156

Title: Re: Reporting in / Nice Topa Side Effect
Post by Gator on Jun 8^th, 2004, 5:42pm

I'm glad you are having good results. DOPEAMAX did nothing for me cure-wise. My HAs actually got worse. I also had the fizzy drink prob. While I was on it, my wife confiscated my car keys. I am an extremely good driver, ex-cop with defensive driving and collision avoidance and other driver training related to anti-hostage and anti-terrorism. My reflexes are extremely sharp. About a week after starting dopeamax, I had to pick my wife up from work, cause our son had borrowed her car. I was almost in 3 accidents in 7 miles. Nothing fancy. The car in front of me stopped because the car in front of it stopped to turn. I just la dee da missed it altogether until my wife screamed. Reflexes still worked well enough to keep me out of his back seat.

Yes thomas, it is an anti-seizure med. Gave me vivid dreams. I started having a recurring dream where I was laying in a shopping cart with my head sticking out the top lain on the left side. There was a large section of my skull missing in the right temple area and above. The shopping cart was being pushed by someone or something I couldn't see. The cart would be pushed up to people who would jam things into my head through the hole, pens and pencils, pieces of rebar, knives and the like. Of course I'd wake up in the full throes of a ch attack.

The dreams pretty much stopped (I still have one ocassionally)after getting off the topamax and I am driving again. Won't try that again.

Gator

Title: Re: Reporting in / Nice Topa Side Effect
Post by Rock_Lobster on Jun 8^th, 2004, 9:50pm

Topa is still my drug of choice, as a fairly mild dose does the trick for me... 100-125mg/day. 125/day == PF for me.

I am still figuring out how to taper off of it effectively.

Worst I get is the 'drinks taste like ass', 'not very hungry', slurring a few words, plenty of typos in notes, and every hour is naptime.

I find that small doses of caffiene throughout the day counteract the worst of it.

Title: Re: Reporting in / Nice Topa Side Effect
Post by Dave_W on Jun 19^th, 2004, 4:50pm

Couple more good weeks behind me, but just before I got really confident I had some really mild (maybe Kip 3) ones show up around lunch time a couple days. So I'm staying with my slightly-reduced dose of Topa (at 100 mg now). Can't say boo to the side effects at this level, but I fear the beast enough that I'm afraid of dropping off any more. Mostly pain free and still proud though... Nothing else helped this year and I didn't have to hit the prednisone!

I'll keep it in the road, and keep the prayers coming for my CH compadres!!

Old Dave

Title: Re: Reporting in / Nice Topa Side Effect
Post by buckeyescooter on Jun 19^th, 2004, 10:39pm

I've been off the topamax for two weeks now and have had some minor shadows. I am staying on the verapamil..480mgs per day and re-started Keppra...500mgs per day. Keppra is a milder anti-seizure that I've had some success with when battling the "smaller" ha's. Hopefully the cycle has been broken. Still have o2, Zomig, and Topamax if needed.