The Vestibular Migraine Community

Topamax Gave Me My Life Back


#1

Hi, I am writing this to give hope to others that are ill with MAV. I used to post occasionally on here but I became so overwhelmed with having MAV that I became depressed and withdrew from others. I felt so ill and hopeless that I honestly felt like there was no chance at a normal life.

I suddenly developed MAV in May 2010 and it was debilitating and nonstop. Daily (all day) I suffered with: severe dizziness (so severe that often I could only walk a few feet then rest) made worse by patterns, crowds, shiny floors, and fluorescent lights; when standing I felt like I was dropping into the ground; the ground constantly felt like it was bouncing; I rocked back and forth. I also had numerous other symptoms. I had a job in research so I could not take time off work. My symptoms were being managed by a GP until I could see a neurologist – I live in Canada and the wait list is long for a specialist.

After failed drug trials (Nori and Ami and three attempts at Topamax) my GP finally put me on Depakote and I immediately felt an improvement. I reached 750mg and while my functioning was better I never felt completely normal. I also gained a huge amount of weight. When I finally got to see a neurologist we discussed the treatment options and given that I responded well to an anticonvulsant (Depakote) we decided to try Topamax again.

My neurologist works at a large migraine research centre here in Canada. He explained to me that Topamax is a very difficult drug for many people to initially take, and to expect to feel ill at first. If a person’s primary symptom is dizziness, this can be exacerbated for some time. Further, he said that Topamax works very slowly, and the positive benefits may not be seen for as long as three months or more. With each titration upwards, the side effects can appear again, but they may lessen. My neurologist said that many patients abandon Topamax long before any benefits are seen.

I have been on Topamax for nearly 2 years. The titration to 100 mg was very challenging but I took my time (6 months). Having a supportive neurologist made all the difference. I was very dizzy getting to 75mg but after that things seemed to calm down. I eventually had to titrate to 200 mg to get full relief of MAV.

Currently I am still on 200 mg of Topamax. I really don’t think much about MAV anymore. I am living the life that I used to live prior to May 2010 when I got MAV. I still get the occasional migraine (but with no dizziness) that is weather related but all the other MAV symptoms are gone. For all of you with MAV please remember that you **will **get better with the proper medication trial


#2

Amazing result from someone who really stuck to the rules. I remember you were so unwell. Congrats to you.

Would you mind copying and pasting this into the Success Stories thread?

Thanks so much and very happy for you.

S :slight_smile:


#3

zoology that is wonderful news thank you for sharing! did you have any unsteadiness walking and did topamax help with that? when you were going up slowly on topamax were u working at the time? are you able to work and function now?


#4

Hi Sara,
Yes, I did have unsteadiness when walking and I constantly felt like I was being pulled to the right. At times I felt like I was going to fall down but I never did. I had to fight to walk in a straight path. This was so severe that in my repeated attempts to prevent myself from falling to the right that over time I developed soft tissue injury to my right ankle. Unfortunately I now have Reflex Sympathetic Dystrophy (RSD) that started in my right ankle and has now spread to the left leg. Topamax has completely removed the unsteadiness.

When I titrated up on the Topamax I was working as I had no choice. I tried to make titration changes over weekends and add a few vacation days onto them if I could to make the transition easier. I did not like coming to work dizzy on the Topamax (certainly dizzier than I already was with MAV!) but I had come to a point where something had to be done. I felt like I was trapped by MAV.

Currently I am able to function and work normally, although I still fill a bit nervous in large shopping malls as I had an episode of vertigo in a shopping centre when I was first diagnosed with MAV.


#5

Congrats Zoology, I loved reading that you feel so much better. Thanks for sharing your story.
Regards,
Helen


#6

It’s always great to read of someone’s success story. Thanks so much for giving us all hope that with the correct meds, we too can get better.

So happy for you

Bev :smiley:


#7

Wow - I had a tear in my eye reading your story. We haven’t ‘spoken’ for a long time, but I am so, so happy for you! I know first hand what it’s like trying to titrate upwards on the Topamax - it took me forever to reach 100mg, and then I had huge anxiety and had to step back down. I have so much respect for you, reaching 200mg! And now you have me wondering whether I couldn’t have battled on for longer…

You had three attempts at Topamax - what made you try again a second time, let alone a third time? And what changed to help you push through on the third attempt?

So pleased for you - you’ve made my day (despite having the worst night’s sleep thanks to ‘spinning’, since all this started 5 years ago)!! :slight_smile:
Tony.


#8

Thank you for sharing your success. It’s really perked me up whilst having a bad week. My neuro has mentioned adding another drug to help things along next time I see him so I will be sure to discuss Topamax with him. I know it may not be my answer but I’m glad it was yours.


#9

glad you were able to tolerate the topamax. it wiped me out and i quit it after a week. my neurologist later tried me on a low dose, slow release form of topamax. i just couldn’t tolerate it and had to quit it also.


#10

Congratulations zoology! I am so very happy for you.

I am currently on 3 tablets sandomigran. Tried amitriptyline got to 25mg felt it was helping with my headaches but made me so very anxious and had a very fast heartbeat. Tried Dothep got to 100mg was working with both headache and dizziness but it gave me hives. Tried Nortriptyline got to 20mg was helping my headaches and dizziness but the resting heartrate of approx 100bpm was not an ideal position to be in. I admire your persistence of sticking with topamax even though it knocked you around. I felt I didn’t really have a choice with the tricyclics, hives obviously being an allergic reaction not a side effect and the racing heartbeat never easing, I wasn’t prepared to do that to my heart for the long term, while I took the med for the undetermined time for my mav to disappear.

The next med I will be trialling is topamax. it scares me a lot. A few threads on here people say Topamax nearly killed me, I felt awful etc. Other than the increased dizziness what were your side effects? Flu like symptoms?

I wish the tricyclics were kinder to me, I think that every med could work for everyone, but its the sideffects that hold people back from reaching the theraputic dose in order for it to work.

Did you take any precautionary measures to avoid the potential sideffects. ie. take any supplement to prevent kidney stones other than drinking the advised 2L of water a day? Now that you’ve got your life back (are you 100% symptom free) and been on 200mg of topamax for a while, do you have any lingering side effects?

If you had your topamax journey over again, would you do anything differently? or give any advice to someone that is about to start it. I think I’m going to be super duper cautious and quarter my 25mg tablet to start off with.

Again, congratulations! and well done you must be ecstatic :mrgreen:


#11

Hi Tee Cee,
I made an attempt the second time because I had read success stories on this site regarding Topamax. I was hopeful that with a second attempt that I could stick to it and have similar success. I was still under the care of my GP at the time. He basically wrote me a prescription and sent me off on my own. I had no support and when I went back to him with issues about side effects I was told “you are medication sensitive and my other patients don’t seem to have that problem”. I couldn’t deal with the increased dizziness so I abandoned my second attempt.

I ultimately gave up with Topamax until I was sent to my current neurologist who is fabulous. He works with the migraine research centre In the city where I live. He is training a neurology resident who specializes in migraines, so through this Topamax journey I was fortunate to see these two neurologists every three months (more often if needed). My MAV was very severe, and chronic. Not once since it hit me suddenly on May 18, 2010 (I will never forget that day!) did it let up. I needed a strong medication to treat my condition. Given that I showed a positive response to the anticonvulsant Depakote, my neurologists thought that I should continue with a drug in that class. They favored Topamax because it has proven efficacy, and most importantly, it does not tend to lose its effectiveness over time. Also, the Topamax would be beneficial for treating the pain of my reflex sympathetic dystrophy.

It was the support of my neurologists, particularly the resident, that helped push my through my third attempt at Topamax. He continually instilled hope, and reminded me of progress made, no matter how small. My doctors remained patient, and did not expect me to have a rapid titration. I could pick my own titration schedule. They also endorsed what a difficult drug Topamax was, unlike my GP who was dismissive. The small glimmers of progress did keep me motivated to keep going: one day realizing that I could walk beside someone and talk to them at the same time without getting dizzy; being able to stand in line at a store without feeling like I was falling into the floor; being able to look at a grocery store shelf and being able to focus.

The largest overall motivating factor for my success with Topamax was that I had reached my limit with having MAV. Everyone around me was living and enjoying life and I was stuck.

Hi Krystal,
My initial side effects (although everyone is different), was the primarily the increased dizziness, and this lasted until 100mg (although with lesser intensity when I got to higher doses). I had a bit of tingling during the early titration, but it didn’t last long. I also had nausea when I started at 25mg, and that lasted a few weeks. Unfortunately I never did get the weight loss (I was hoping to lose some of the weight gained from the Depakote). I never had flu-like symptoms. The titration from 100mg to 200mg was much easier.

At 100mg I experienced anxiety and agitation and this lasted for several weeks. I took ¼ of a 0.25 Clonazapam tablet as needed. I also had problems with memory, attention, word finding and writing (this became worse at 200mg), but this side effect improved with time. As for kidney stones my only precaution is to drink plenty of water.

My lingering side effect is a chronic dry cough that is worse at night. I am largely symptom free at this point (I still get migraine pain sometimes).

If I had to do my Topamax journey again I would make sure I had a supportive physician. That really makes a difference. Also, I would be prepared to tough it out like I did the third time around. I am a real wimp when it comes to medications and I am angry with myself thinking about the time I wasted because I gave up too soon. Remember to set your own pace for titration and if a symptom gets unbearable drop back to the next level, wait a bit, then try again. Recovery should not be race. It took me two nearly two years to get to this point with Topamax. Don’t forget it takes as long as three months for Topamax to work at each titration level.


#12

I forgot to mention I also still have the side effect of impairment with writing when I have long documents. Despite editing the above post I still see grammatical errors. When I first titrated to 200mg of Topamax I would reverse word order in sentences and write the same words or sentences twice. This side effect has improved significantly. When I first titrated to 200mg the paragraphs that I wrote were complete nonsense


#13

Thanks for your detailed response zoology. Do you think that these still present side effects will dissipate eventually. My neurologist said that you can only start to consider coming of your med, once you have been absolutely symptom free for at least 6 months. Does your neuro say something similar? Even though I’ve had this for 1 year and 7 months it still sounds like I’ve got a rough road ahead of me. I may be calling on your topamax wisdom for encouragement in the future. Thanks for sharing your experience with us, its always so excellent to hear from someone on the other side of all of this. Thanks again :smiley:


#14

Hi Krystal,
My cognitive side effects do seem to be getting better. I saw my neurologists last week and they said that with time the memory and other cognitive functioning issues for many people do seem to improve. Remember that I am at a high dose and this is correlated with more significant impairment (compared to the usual dose of 100 mg of Topamax per day). At least I am not putting the toaster in the fridge anymore! However, the cough (a rare side effect) is getting worse (although I have read on the internet of others with this symptom).

My neurologists have not discussed me coming off of the Topamax. I have a complicated situation as I also have Reflex Sympathetic Dystrophy. The Topamax was found to be helpful in minimizing the pain of this condition that cannot be cured.

You may not have a rough road ahead of you. Everyone responds differently to medications and you may have very few problems with Topamax. Think positively and focus on a brighter MAV free future!


#15

zoology did u ever use a cane or a walker before topamax? thanks again for coming back and telling us of your success!


#16

Zoology,

Would you explain what your onset was like? You described it as sudden. I am not diagnosed but also had an event that occurred suddenly and caused months of imbalance, brain fog, problems in stores and with busy patterns, anxiety etc. I have worked very hard to decrease the anxiety and now I feel much better but I notice several things any of which will set me off: lack of sleep, stress and headaches. Over the holidays, I had all three and consistently did not feel great, but now that things have settled down, I am feeling nearly normal. I have been to an ENT and had testing and he believes I have minor vestibular damage in one ear and prescribed vestibular therapy. I just believe it is related to migraine as I have suffered periodically from dizzying headaches over the years and my mom has terrible migraines.

Thanks,
Kacey


#17

Thanks zoology, sometimes worries can take hold and just drag you into a spiral of negativity, I needed that kind reminder.

Kacey, i woke up with my dizziness one morning, perfect the day before then BAM. (although a couple of months before I had one dizzy afternoon but disappeared after a nap, if I knew then what I know now, I would’ve done things much differently) Maybe these blips you’re experiencing is a good thing, in that its like your body warning you that something lies in the horizon if things don’t change… Once you’ve been checked out, maybe you could instil some migraine lifestyle changes to help prevent things from erupting. Not saying things will. But maybe try de-stressing, eating as per the migraine diet, regular light exercise, cutting down on computer time etc etc.


#18

Hi Kacey,
On the morning of May 18, 2010 I was at work in a very large University medical/research facility. I was walking down a busy corridor when suddenly the floor felt like it was tipping. It was just awful as there were people coming at me in different directions and my vision was becoming blurry. I started hearing a roaring noise in my ears and my hair and shirt became drenched with sweat. My heart was pounding and I had palpitations. I found a chair and I sat down as I felt like I was going to faint from the dizziness. I have honestly never felt so ill in my life (prior to this event I was in perfect health).

After about half an hour I managed to get up and walk slowly back to my office. In addition to the dizziness (which only got worse over the subsequent months) I had terrible neck pain with feelings like an electric shock that went from my head down my back.

That is how my MAV started. From that morning on May 18, 2010 until the time it was successfully treated the MAV was relentless.


#19

zoology did u ever have to use a cane or a walker to help with balance?


#20

No I never used a cane or walker to help with balance, but at my worst it would have been beneficial. Looking back I think that the use of such a device likely would have minimized me veering over to the right to such an extent and thus prevented me from straining my right foot and ankle repeatedly. Now I am left with reflex sympathetic dystrophy and the possibility of profound disability in the future.

Why didn’t I use a cane or walker? Vanity and pride were the main reasons. I also did not want to admit that I was that ill.