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Old 08-25-2007, 10:42 AM   #1
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Finally got to see a neuro....nervous about Topamax

Since being on disability, and the lousy way Medicaid works, I haven't been able to see any specialists. Now I'm on Medicare (and a private pay for service insurance that is like a regular insurance plan), and got to see a neuro for the first time in over 3 years.

I'd been in the hosptial for a TIA (pre-stroke), and another trip for headaches with increased seizures- both within a few weeks of each other. Being on Coumadin (blood thinner), I tend to be a bit overvigilant about new or changing symptoms.

Anyway, he's starting me on Topamax. I'm willing to try a new med, but I've had such problems with appetite on the other stuff I take (for several disorders), that I'm a bit nervous about starting this. He is slowly increasing the dose, by 25mg/week until I get to 100mg twice a day- then I'll start decreasing the Tegretol (that I"ve been on for years, but interferes with the Coumadin).

Guess I'm just venting- I always get nervous about new meds- some have been disasters, and others have been great for helping regulate all that's going on.

 
Old 08-25-2007, 11:10 AM   #2
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Re: Finally got to see a neuro....nervous about Topamax

Hi,
I saw your post and wanted to respond as we have some similarities. I am also on coumadin and was hospitalized for a TIA recently. The TIA started a round a seizures which I hadn't had for many years. Anyway, I was just put on Topamax and found that it does lower the coumadin level and it's just something I thought you should be aware of and may need closer monitoring. Feel free to vent, that's why I came to these boards also. Because of these new seizures, my driver's license has just been suspended and I came to these boards in search of information and support.

 
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Old 08-25-2007, 11:27 AM   #3
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Re: Finally got to see a neuro....nervous about Topamax

On the initial ramp up there may be episodes of "brain fog" briefly where you lose your train of thought or speach. I had that happen when first ramping up on topa to 100mg BID. Usually the effects will strike shortly after an increase with the medication.

My doc had explained to me it takes the body about a week to adapt to Topa, that is why the slow ramp up. After reaching 100BID I was able to jump in 100mg tabs without effects, but that was most likely due to my system being tollerent. If the doc wants you to increase they may have you bump up using the 50's the second time (thankfully THOSE are coated).

I didn't have sideFX until I first reached 300/day and at that level it was minimal. Just keep an eye on the sideFX and how much you eat (or don't eat). If that side of it kicks in earlier adapt to forcing yourself to eat on a schedualed time basis. The medication's effect on the mind making a person think they are not hungry is NOT an effect I care for.

I don't know what would happen to me if they tried taking me off Teg again. I've been on it from the start of my medications. I'd be very nervous. Last time they tried it was with The Dr I had no respect for (it flopped needless to say). He tried taking me off at too quick of a rate even with me voicing my concern that it was a fast reduction he ignored me.

I hope they go slow and smooth for the reduction of Teg for you.

--Travis

 
Old 08-25-2007, 12:17 PM   #4
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Re: Finally got to see a neuro....nervous about Topamax

Hi Neuro,

Vent away.I have never been on Topamax.As Travis said,my body
wouldn't know what to do without the Tegretol.


Take care and Good-luck,Sherri

Last edited by Sherri5186; 08-25-2007 at 12:20 PM.

 
Old 08-25-2007, 06:58 PM   #5
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Re: Finally got to see a neuro....nervous about Topamax

I don't mind the weight loss I'm seeing on the Topamax (l5 lbs, in 7 weeks) but is anyone else experiencing horrible stomach problems on this drug?
Is there a coated version of this pill?

 
Old 08-26-2007, 07:28 AM   #6
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Re: Finally got to see a neuro....nervous about Topamax

Thanks y'all. This doc is good about telling me to do this increase only in weekly increments, and to not start stopping the Teg until I'm ok on the Topa. Then, it will be a pill at a time- which is good. The last time I was taken off Teg to try something else, they did it too fast, and I was a moody maniac, kicking my office desk, getting upset over nothing, etc.

I've got enough spare weight to drop, but don't want it going too fast, or to get in that cycle of just not remembering to eat- it's still not 'normal' now from years of that with other meds.

And thanks for the heads up on the Coumadin/INR levels- they've been flopping around all over the place (and there's not any high vit K foods around here), which the neuro says the Teg has something to do with, and the Topa won't be as bad....I'm hoping.

Thanks again

 
Old 08-26-2007, 10:54 AM   #7
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Re: Finally got to see a neuro....nervous about Topamax

I'll type in a huge caution here. I don't know if you are on teg Tab or XR.

When my Previous Doc (again, the one who I didn't like) tried removing me from teg; he tried using the Teg 200's WEEKLY (one side of my dose at a time)!!! Talk about a scare. Thats why I had voiced to him using the 100's and he gave me a look of disgust and said the 200's would be fine.

That rate "IN MY MIND" is tooo much too quick. I'm only a patient.

Well lets say at his rate it caused 2 GM's when I was out of state. His NURSE told me to go back to my previous dose didn't even talk to him! I think she understood how I felt. This was long before I started Topa.

--Travis

 
Old 08-27-2007, 08:39 AM   #8
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Re: Finally got to see a neuro....nervous about Topamax

Fortunately, I've got a ton of Tegretol 200mg (regular tabs due to availability in generic from patient assistance place), so I can go as slow as I need to , and they're scored so I can split them. I didn't have any GMs when going off of it, just got really moody, and downright ornery at work (at home, the dog didn't say/do anything to **** me off !!). The poor desk at work survived, but I'd got into these waves of being so disproportionately upset, and immediately know I was way out of line, which scared me- I called my neuro then, and they stuck me back on a higher dose, and did a more gradual taper- so, I'm on 400 mg twice a day- I can reduce by a half a pill as long as needed. The upside is that when I'm off the Teg, my Coumadin/INR levels should straighten out.

 
Old 08-27-2007, 10:44 AM   #9
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Re: Finally got to see a neuro....nervous about Topamax

I don't have the book in front of my face, but I want to say Teg adjustments take up to 21 days to level out in a persons system.

So talking with your Dr over this it could be every 2-3 weeks trying to drop half a tab in the beginning; you may have to see how it goes after that... See what the Doc says.

Remember to alternate AM and PM in the reduction process over time so you don't have a difference in dose from morning to night. Makes reduction easier.

Sorry to hear about problems this early on.

 
Old 08-27-2007, 06:12 PM   #10
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Re: Finally got to see a neuro....nervous about Topamax

I just started the Topamax 25 mg today (this afternoon), apart from other meds, just to see how it effects me alertness-wise. I had a surprise party for my dad yesterday, so didn't want new meds possibly messing me up (100+ people for his 75th party...I did all of the planning, but had help with coffee, punch, and picking things up)-- so waited to start until today, plus the pharmacy had to order more of the 25mg tabs.

The Tegretol reduction was from a past ordeal with it, so I plan to speak up when the time comes to start reducing it- at least this doc gets it, that these meds just can't be yanked away from people, especially when they've been on them for years. That's a relief.

I'm hoping my INR straightens out, since it's been dropping (and I take alternately 10 and 12 mg of Coumadin - generic- daily....I had to get up to 20 mg/day in the hospital after the pulmonary emboli before I got to the 2.5 INR in order to go home.....today it was down to 1.7- 3 weeks ago it was 5.4, so it's really a mess, and I don't eat high vit K foods, so that's not it- it's just been really hard to get controlled, but I'm on 15 different prescriptions, all of which have some interaction with Coumadin- but I can't avoid any of them....there are more prescriptions plus over the counter stuff, which the doc knows about, for 'as needed' uses on bad days (headaches, nausea, etc).

So far, nothing is different. I'm just aware that the eating thing can be a real problem (I've had to do my own nose tube for supplements in the past 3 years), and also the drug interactions.... I wish I could get off of more of the meds, but I don't see any primary seizure meds on my list other than the Tegretol- I wonder if it's even safe to go off of it completely. I can have a good therapeutic level at a fairly low dose. Topamax says "adjunct" med in all the literature I've read.

 
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