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Topamax Gave Me My Life Back


#142

because even though the 25 gwice daily shpwed improvement i still wasn’t at 100% and the improvement started at abput 2 weeks which as i could tell was still a bit early so from what i read i had to keep uptitrating. I’m a long time sufferer of daily migraines aa well amd my neurologist had previously told me to Titrate up to 100mg a day. bit i didn’t have MAV at that time so i wasnt very compliant


#143

I asked because I saw a vast improvement at 12.5mg twice a day and that is what I have stayed on for a year despite my doc asking me to titrate up to 50mg twice a day. I just decided the improvement was so brilliant I didn’t want to worry about side effects of titrating up and my doc is very happy with the outcome. My symptoms were very severe and I will probably have to stay on topiramate for life but at such a small very effective dose I don’t mind. I think we need to advocate for ourselves in this way and decide when we have reached our optimum dose and the docs are happy that we do, we will not upset them by being proactive. I hope you reach your own optimal dose too as it is wonderful when you find a med that works to tame the VM beast.


#144

i do believw in that too and definitely everyone is different but i can’t help but wonder will I see greater improvement with a higher dowe or should i stay on the 25mg twice daily for a few months since it worked well?


#145

If it were me I would stay at the lower dose and see how it goes. I hope you have a really good result that way. Also, if you are able to go without meds in the future it will be a whole lot easier to do so going from a smaller dose.


#146

i think that makes sense. I’m just having a hard time deciding between toughing it out on the 50mg twice daily since i have reached that now already (although it feels horrible compared to 25 twice daily but that’s expected at first) because the benefits are expected tk be better or to go back to 25 twice daily and hope that I’ll feel even better with time???


#147

@Deedee1 my neurologist, who specialized in migraines, cautioned about moving too quickly with the Topamax titration. He said that Topamax is a drug that is slow to work, hence the benefits may take some time to see. Moving too quickly with the titration results in taking more medication than one needs to; while the symptoms may have resolved there will likely be a problem with side effects. With higher doses, Topamax is associated with quite a few adverse side effects, and some of them may not resolve with time. Due to the severity of my MAV, I am on 225 mg of Topamax for life and I have to deal with attention and cognitive problems. The lowest dose possible is always preferable.

My neurologist said that the positive benefits of Topamax may not be apparent until 3 months after the titration. If there is no significant symptom improvement after a couple of months post titration, then move on to the next higher level.

Everyone has a dose that is unique for their needs. Some people respond to lower doses, others need a much higher dose. One hundred mg is considered the “standard” treatment for migraines but clearly, there is individual variation around this.


#148

Well said!


#149

@Revolving it is just fabulous that you got symptom control on such a low level of Topamax and that you advocated for yourself. I have conversed with a few others that have achieved similar results on under 50 mg. Many physicians push high levels of Topamax at an alarming quick titration rate. My neurologist actually called the medication an unfortunate “poison” because of the vast number of side effects that can occur - it treats the problem but creates a whole host of other issues.I am certainly not the person I used to be on this medication. I have been on a high dose of Topamax 8 years now and mentally I am definitely impaired. That is the first question my neurologist asks at a visit now - “How is your cognition?” I have a graduate degree in biology and I know that I could never have gone to University taking this medication. I have severe attention and cognitive impairment (I cannot even remember the names of familiar people) and extreme fatigue.


#150

Lisa, I’ve been following this thread and can’t tell you how grateful I am for you having shared your experience here. At the least, I had my husband read a few of your posts and finally he seems to get what I’ve been trying to explain to him about MAV.

I have a question for you. Two days ago I titrated up from 25 mg to 50 mg Trokendi XR, after only 10 days at 25 mg. My neurologist wants me to do the standard too fast push to 100 mg. I’m reading your experience and thinking maybe I’ll go back down to 25 mg for a while. I was seeing benefit even this early at a low dose. When I told my neurologist I’ve been avoiding topomax for 18 months because of cognitive impairment, she said ‘you’re smart, you have room’. It was a joke, but not that funny. I’m an advanced degrees knowledge worker type myself, and a sole proprietor to boot. Cognitive impairment isn’t a nuisance or inconvenience, it’s a living nightmare I’m only risking because MAV has me desperate and I’m already non-functional. What do you think? Drop back down and give it time?

And, did you try vestibular rehab? Insurance just denied me. I’m trying to decide if I want to use my limited energy and lucidity fighting them.

Again, thanks for spending your time and energy with us. You’re a lifeline and a Godsend. :heart_decoration:

Emily


#151

I happened to speak with an acquaintance yesterday who told me that his wife has been having memory problems. They are retired and I assumed that she must have early-stage dementia.

He said, “No, this isn’t dementia. It was caused by a drug that she took to prevent migraines.” I asked him which drug she took and he couldn’t remember the name of it. So I started naming the drugs I’ve seen on this forum and in lists for migraine prevention and when I got to Topomax, he said, “That’s the one.”

I didn’t ask him how long his wife has been OFF the drug. I wonder whether her memory will eventually return.


#152

I read somewhere that it was too early to correlate topomax with permanent brain and nerve damage and dementia, but it looks like the trend is going that way. How can it not?


#153

@flutters cognitive impairment is certainly a serious issue and I can understand your concern. A specialist at the clinic that I attend (not my regular physician) said in response to my cognitive impairment “it is a good thing you were so smart initially because Topamax has just brought you down to the normal intelligence range”. I was shocked and upset by this comment. I worked in research and lost my job last year due to economic downtown and I know that I cannot return to that field because of my deficits. Even composing a simple email message is now challenging as all the words are jumbled up and I will write the same sentence multiple times. I struggle to learn new material. I have to check all written documents multiple times. I just feel sick when I look at my thesis and see the level of writing and complex thought that I could once do. I recently tried taking a Microsoft Office course and I lagged behind all the other students because of my severe attention deficit problems. I never had this issue prior to Topamax. Yet without Topamax, I would plunge back into the nightmare of MAV so I am stuck.

As for your medication, I would recommend staying on a low a dose as possible and monitoring how that works. In regards to vestibular rehabilitation, I tried that prior to when I saw the neurologist (I live in Canada so there is a long waiting list for specialists). I did not find it particularly helpful. I was given exercises to do - for example walking in circles, walking in a figure 8 pattern. When I finally saw my neurologist he did not recommend going to a formal vestibular rehabilitation program. He suggested for me to go out into visually complex environments for increasing amounts of time. For example, areas that are certain to trigger your MAV. For me I had difficulty with grocery stores (the lights, the line up at check out, shiny floors); big box stores like Costco; large shopping malls (shiny or patterned floors, the lights, the noise, crowds of people coming at me).

I did what the neurologist suggested and it was very difficult at first. I was terrified of shopping malls. I had a vertigo attack in a large shopping center when my MAV was at its worst and had to sit for several hours before I could stagger out. At first, I would go to very busy malls and just walk around the perimeter for about 15 minutes. Gradually it got easier and I could go into individual stores. My neurologist told me to “push” myself so I would go into the most crowded stores with loud music like H&M and look at the racks of clothes (all the racks, the mirrors, and the music put my MAV into overload and it would feel like the floor was moving). Eventually, over time I noticed my symptoms were improving.

MAV is a horrible condition and so very difficult to treat. I hope your recovery goes well - Lisa


#154

Thank you so much, especially for that long and detailed response. I understand the cost. I used to be a very active, very smart woman. I’m struggling to accept that I won’t get my old life back while balancing hope that I may still fashion a quality life with love and joy. I pray that you have joy and love and peace with your life as it is now. Just the other day I was telling my therapist about abrupt climate change. Some things die. Others adapt. It’s never the same. It’s something new. I won’t be what I was. I will adapt and be something new, something more suited to my new self.


#155

Dear Lisa
thank you sooo soo much for your helpful replies. yours have been one of the very few thst have actually made sense to me. I went back to 25 twice daily at least for now because the higher dose felt AWFUL
I asked my neurologist and he also advised me to do the same (partly because slower titration is better and partly because aa u said everyone reeponds to different doses). I’ll stay on that flr at least 2 months then if symptoms aren’t adequately controlled I’ll consider titrating up

I wanna say this forum and everyone here have been so wonderful, i dunno wat i would do without you all, it’s such a relief to find someone who understands what you’re going through
and it gives me hope to read stories like yours and others that recovery IS possible and MAV ca definitely be controlled.


#156

so just a quick update
I’ve been on topamax 25mg twice a day for a month and half now, not gonna say i see no results but they’re not a 100% yet. i did have an episode of bppv 3 weeks earlier rhough n was treated properly with a maneuever but that took a good week for me to get my balance back. so just wondering if anyone else has had rhis happen too? not sure if i shouod continue with my current dose for another montj and half and then increase if i dnt see results or should i start increasing from now? it did feel that after the bppv setyles it made the MAV a bit worse again. like the head motion sensitivity has increased a bit more again so I’m a little confused. really need some help guys


#157

Lisa @zoology has some very good advice. Go slowly when titrating up. It’s takes a good 3 months on a new dose to establish baseline. These are very powerful drugs. Don’t rush them.


#158

yeh her posts have been very helpful, I’m just not sure whether at this point i should be seeing enough improvement to know that this is the dose that’s right for me to improve or i should wait for the duration of 3 months before i see reaaaaal improvement because i am seeing a small improvement


#159

I’m not exactly the best source on this one. The side effects of that med at just 25mg were unbelievable for me. I was on it 29 days. That was 20 days ago and I still don’t have full feeling in my right hand. I regard topomax as a neurotoxin. I don’t deny it was taming MAV, but the cost for me was too high. As I often read here, mileage will vary. I think you have to decide what’s right for you. Go up a bit and see how that feels for a while. You can always titrate back down. But, I read this a lot on the medical sites (the serious ones without a financial stake in drug sales), it takes at least 3 months at any dose to determine where your baseline is. You may be slowly improving without noticing it.


#160

before the bppv there were a few days were i noticed significant improvement. but now I’m feeling off again. not sure if its the bppv recovery phase or because of the generally tiring days/stress or the fact that I’m still.ona low dose its all so confusing


#161

Confusion, I think, is the only really consistent thing about MAV.