The Vestibular Migraine Community

Topamax Gave Me My Life Back


#122

This thread convinced me to retry Topamax back in 2014, even though I had tried it at 100mg few years earlier without any success. The key to my success was increasing the dose to 150mg, I spent about a year on that dose and felt basically back to normal again. I decided to get off the medication and did well for 6 months, but the stymptoms started to creep back in. I am planning on getting back on Topamax, or trying an SSRI with the hope that it has less side effects. I just wanted to say thank you zoology, I remember PM’ing you a few times asking for advice, and your advice led me to finding the right medication.


#123

Ichbindarren,

I read your post history with great interest as my symptoms have been really like yours.

Out of interest, when you were doing well, how were your ear symptoms? Did they improve significantly too?

All the best with getting back to full relief.


#124

Hi ichbindarren,
I am glad that Topamax did ultimately control the MAV. I have tried lowering the dose but my MAV comes back so I am on the drug for life. I don’t like the side effects but they are better than living with vertigo. At least you know that Topamax worked in the past and that is an option again for you. The best of luck in whatever medication you decide to take - Lisa


#125

Turnitaround,

Ever since my MAV started, I have had a wooshing sound in my left ear when I lay down and move my head, its basically the illusion of liquid moving around in there. Topamax didnt take that away, Im not even sure that its migraine related. EIther way, the sound doesnt bother me at all because I have to move my head a certain way to even notice it.


#126

I have all those symptoms too. But it’s changed over time and doesn’t bother me so much either. It mainly happens when I get up from bed in the morning. After that doesn’t impact me. However I think it gives a clue to the underlying condition.


#127

Lisa,
A couple of months on…
I have seen some improvements, I am thrilled to say. I await a referral to a new neurologist. I won’t hold my breath.
Thing is… when things get spinning badly I succumb to half a Clonazepan pill to take the edge off. I have had no medical advice for doing this. I got this information from this forum from desperate, experienced people who got to see actual doctors. My family doctor tells me she won’t contravene instructions from my neuro. My neuro is impossible to get into. I wonder if you would be willing to share your experience with me. Strengths and how often.
If you are comfortable doing so.
Many thanks
Marg


#128

Zoology,

I decided to get back on Topamax since it worked so well for me the first time. Im currently on 75 mg and the titration process has been difficult, i’d say its been harder this time than the previous two times that I’ve tried this medication. Im titrating very slowly because the medication makes my MAV, tiredness, and anxiety so much worse than it already was. I want to stay on the medication because it worked so well for me before, but its a struggle because I feel worse even after I get used to each new dose. I’m seeing my doctor in 2 weeks and I might ask for an SSRI to add to the Topamax help with the anxiety. Do you remember feeling like this?


#129

Hi Marg,
I have been taking Clonazepam since the fall of 2010. I was initially prescribed 0.5 mg by a GP to help take the edge off my dizziness while I waited to see a neurologist. I am very assertive with physicians and given that my MAV was very severe I argued with doctors about my need to stay on Clonazepam and take it on an as need basis. When I started Topamax I did not require such a strong dose of Clonzepam so the dose was reduced to 0.25 mg/day as needed.

Even on 225 mg of Topamax I know that certain environments will trigger dizziness so I carry the Clonazepam with me. I still have difficulty with some lighting (Costco, sometimes Superstore), crowded malls. I saw the new Calgary airport terminal on tv and for sure I would have to take Clonazepam in advance before even entering the building. It is a MAV nightmare (super shiny floors, vaulted glass roof with beams, flashing lights, crowds. . . ). I have a pill cutter and sometimes all I need is half a 0.25 mg tablet of Clonazepam. Many days I do not need any - it all depends of on the setting that I am in.

I do know that I will likely be on Topamax for life. Clonazepam is very beneficial and it certainly has made my life a whole lot easier when dealing with this MAV nightmare.

Take care,
Lisa


#130

Hi ichbindarren,

Yes I do remember having those feelings of anxiety and intense agitation when titrating the Topamax. It was just terrible. The only thing that helped me during that early titration period was the Clonazepam which in addition to suppressing the vestibular system, is also used also to treat anxiety. After a couple of months these feelings did slowly subside. An SSRI could be helpful for you.

Best of luck to you,
Lisa


#131

Thanks, Lisa. The doctors I have seen make me feel like a junkie waiting to happen. Geezzzz…
They should live with this MAV and they would be singing a different tune.
Marg


#132

Hi Marg.
Yes I felt like a “junkie waiting to happen” as well. I did not mention the first 5 months that I attempted to get a benzodiazepine such as Clonazepam prescribed. I was so terribly ill that I could barely stand. I had severe vertigo 24/7, every day to the point that I could not even go into stores or other busy public places.

I did not have my own family GP at the time so I went from one walk in clinic to the next. I worked in research (I have graduate degrees in biology) so I had articles that said benzodiazepines worked as a vestibular suppressant. Clearly in my state I needed a medication to take the edge off the vertigo because I was truly suffering and my quality of life was severely impacted.

In that 5 month period I was NOT prescribed Clonazepam or another benzodiazepine. I was initially given Serc (betahistine) - absolutely useless. My vertigo escalated during the time I was on this medication to the point I was almost housebound.

On three occasions I was so ill that I went to urgent care out of desperation. Again I took my literature with me. 1) Trip #1 - I was told to take gravol and sent on my way. I could not have Clonzepam because of the potential for addiction. I remember this visit so clearly because the vertigo was so severe that I could barely stand up in the queue at triage. I was swaying and I felt the floor moving. 2) Trip #2 - Again I went to Urgent Care. The MAV and vertigo were getting worse over time. This time I was prescribed Metoclopramide, a drug for nausea/vomiting. Again useless. I was told I could not have the Clonazepam - I would be addicted and it would not help. 3) Trip #3 - At this Urgent Care visit I brought even more academic literature about MAV and benzodiazepines. The doctor said she would fix me up with a very good medication. She prescribed Perphenazine - an antipsychotic medication used to treat schizophrenia, that also controls nausea and vomiting. I couldn’t believe it. When I asked about the Clonazepam she dismissively said “you don’t want to go there”. The Perphenazine made me so ill that I could not even function.

I finally found a GP at a walk in clinic that prescribed the Clonazepam 0.5 mg. As soon as I took it I had some relief from the nightmare that I was living. When I began taking the Topamax and got to a dose that worked I found that I did not need the Clonazapam as much so the dose was reduced to 0.25 mg as I mentioned in an earlier post. I also do not need to take it every day. I do not think that I am the picture of an addict.

It was a horrible struggle to get the Clonazepam prescribed. I honestly don’t think that doctors realize how much people with MAV suffer. I have my own GP now and I go to a teaching clinic that places family practice residents. I make it a point to emphasize to each resident that I meet the symptoms of MAV and the need for such medications. After these Urgent Care experiences I have learned to become much more assertive about the severity of MAV symptoms and the need for better symptom control.

  • Lisa

#133

Lisa,
Thank for your share. I understand, now, why you seem to have such a handle on this medical stuff. Your biology background. We need advocates like you who can speak the lingo and not get double talked. As for colozapam…
Did you take it regularly? Twice a day? Once?
I too was prescribed serc, and was advised to take gravel, antihistamines, all sorts of garbage. I stumbled onto colozapam by accident. It isn’t perfect and I use it sparingly. I mentioned to my neuro that I had taken this pill on a ferry to counter sea sickness and she basically washed her hands of me. She said I should go to my family doc for anti depressants. I did find a medi centre doc who wrote me a script for 20 pills that I have yet to fill. He warned me of the adictive side effects but allowed me, the adult, to decide.
He didn’t know how to combine topomax with colozapam. So, once again, I seek advice from the experienced.
This is 5/12 years of this grind and for every step forward, I take Two back. I am not stupid and I don’t want to add to my problems! Believe me.
So, to be clear, can you be more specific on your dosage.
Also, when you titrated up on Topomax, how much did you increase and how often?
Thanks
Marg


#134

Hi Marg,
when I first started out with my severe vertigo I was “allowed” (that is how I felt I was treated by the medical profession) 0.5 mg of clonazepam a day. I could have 30 pills a month prescribed at one time and they were carefully counted at the pharmacy - I could not go in for a refill until the very end of the month. Honestly I used to joke that getting an illegal drug off the street would be easier than getting clonazepam. If I did not go out on weekends or on some other days I would not take any clonazepam. I would “hoard” the clonazepam and sometimes take more than 0.5 mg on the days where my vertigo was particularly severe (and did I every have some bad days. . . ). I did not tell any of this to the doctors. I never took more than 0.75 mg (I have a pill splitter) or 1 mg of clonazepam a day.

I usually found one dose in the morning sufficient. However, five months into the MAV and on no preventative treatment the symptoms were completely out of control (ground moving, rocking, sinking feeling, tinnitus, basically all MAV symptoms). I sometimes had to take two clonazepam, one in the morning and one in the afternoon. I made arrangements with my employer to work at home which was helpful (and which saved my clonazepam supply!). When I began taking anticonvulsant medications - first Epival (I quit this due to weight gain) then Topamax - my need for clonazepam decreased because my symptoms got under control.

On the Topamax, I started with the 0.5 mg clonazepam, but as the medication started to work I didn’t need that dose anymore as it was too sedating. I still needed something to take the edge off my dizziness in certain environments that are triggers for me (flickering/flashing lights, crowds coming at me, a large number of fluorescent lights). My clonazepam dose for the last three or so years has been 0.25 mg. I have had NO medical guidance on how to take the clonazepam. This is all from my personal experience and my own MAV triggers. If I am at home or going out to a quiet place I don’t need any clonazepam.

If I am going to a MAV trigger area, I will have to take some clonazepam:
For example, if I am going to Costco on a Saturday I need to plan ahead and take 0.25 mg clonazepam in advance in the morning a couple of hours before I go. 1) Despite being on Topamax for years Costco still makes me feel very weird. I never felt like that before MAV. The lighting makes me dizzy 2) Sometimes my brain has trouble processing the movement of large crowds, a lot of noise, and a complex visual environment with all the shelves and colours. For some places I only need half of a 0.25 mg clonazepam tablet.

As for the Topamax titration I am probably not the best person to ask as I am super medication sensitive. It took me nearly two years to get to 225 mg. My neurologist suggested that I move upwards at my own pace. He said 25 mg, 50 mg, 75 mg, 100 mg, with a minimum of three weeks between each titration. Topamax works very slowly, so it takes a long time to see improvement - often several weeks. I actually had to cut the 25 mg tablets in half with a pill cutter and even the 12.5 mg tablets made me ill at first. Ultimately I devised my own plan and what worked best for my own body. I stayed at a dose for several weeks. If things were improving then that motivated me to continue. I would increase the dose again. I would try 25 mg - If that was too much too handle then I would increase the dose by 12.5 mg. I found that once my body got used to Topamax the titration became easier - this happened around the 75 mg mark. Unfortunately my MAV was so severe that I had to end up taking such a large dose of Topamax.

I am so sorry you are going through this and the ongoing battle with doctors. I go to a medical teaching clinic associated with the University of Calgary Faculty of Medicine where they train residents to be GPs. Every few months I get a new resident and they review my medications. I am tired of explaining why I need clonazepam and the whole quality of life lecture that I have to give them. If any of the GPs or other physicians had MAV they would be popping clonazepam like smarties.

I hope this helps.

Take care - Lisa


#135

Lisa,
Well, that was just what I needed!!!
You sound like you are handling everything as well as any one could possibly expect. You are the first person I can get a reasonable response from regarding coInazepam. I am forcing the Topomax dose somewhat in hope I will have less dizzy spells. Holidays have been hard and I have take colnazepam every day.
Can’t tell how much your sharing your information has helped me. Perhaps, I can help you a little…
Yes, I have lost all pride! I don’t care anymore what people think!
I purchased a pair of glasses from the Showcase store at the mall. The were $15. They have yellow lenses. They can wrap around your glasses, or like me, if you dont wear glasses, you can just wear them. I use them to drive at night, walk my dog at night because of the street lights and car head lights, and now I wear them whenever I am subjected to fluorescent lights. They don’t darken, they cut the nasty. You soon get used to it! I wore them Christmas Day at a hall party. It was either that or leave. They really help.
Wishing all of us a healthy new year!
Marg


#136

Lisa,
Hi. Hope you are continuing to beat the vertigo monster. Advice please…
I have finally reached the goal of 100mg of Topomax per day. That was a week ago. I feel lousy, my swimmy, dizzy head is as bad as ever. Many things have improved, I am happy to say but my dizzy head never really goes away without kolonapin. Light sensitivity, tv watching, computer, all improved, somewhat. I have some awful side effects, weight gain, unabated hair loss, depression, anxiety. This would all be worth it if this damn vertigo would stop!
I have reread your posts and you indicated you had success on epivil.
How did you judge when to keep trying with the drug you were on or when to try something else?
Thanks
Marg


#137

Hi Marg,
I am sorry to hear that you are still feeling ill. You may need to stay for several weeks at 100 mg and see what happens or even move past 100 mg. In my case, I kept reading that 100 mg was the dose for migraines and here I am at 225 mg - I never thought that I would be at this dose when I started out. I thought that once I reached 100 I would be cured. Was I ever wrong! I had some improvement at 100 mg but I was far from normal. I didn’t know what to do so I kept going up to 200 mg because my neurologist told me I could.

I had a very severe case of MAV that was slow to respond and needed higher doses. Topamax needs a long time to work. You have to spend at least a month at each dosage change to see if the dizziness is getting better. Patience is the key. After 100 mg my life really started falling back into order; with each increase things started getting better. The fact that you are seeing some improvements is extremely encouraging.

As for Epival I did see improvements in my dizziness but I never made it to the target dose


#138

Hi Marg,

I need to add about the Epival that I used to be a size 0-2 and a vegetarian with a strict diet. A doctor previous to my neurologist put me on Epival and claimed that it would not cause weight gain. Within 6 months I gained 60 pounds. I had to discontinue the drug because the weight gain was getting out of control. I have a friend who takes it for seizures and she struggles with obesity. I read in the literature that over 50% of people that take Epival will have an issue with weight gain, and this is more problematic for females. I still struggle with my weight to this day and I wish I had never taken that drug.

Take care,
Lisa


#139

Thank you for posting…this gives me hope. I was prescribed similar doses and was concerned because it seemed high in comparison to others on here. Makes me feel better knowing that you were able to tolerate that high of a dose so quickly. I am on day 2 of 50 mg at bedtime for 7 days and then 100 mg at bedtime starting next week. I feel awful but better in some ways. Really want my life back :frowning:


#140

hey there! @zoology
so happy for you! glad to hear that u have had success with topamax. i have MAV for 2 years as well (self diagnosed) n i have now been on topamax for a little over 3 weeks. when i was on 25mg twice daily i felt great but when i increased to 25 in the morning and 50 at night i felt the dizziness start up again. i tried to push through cos i read so many stories that that’s expected and the true effect is at 100mg a day for a few months. just wondering if u experienced a similar effect?
would really appreciate ur input


#141

Excuse me for asking but if you felt great on 25mg why did you want to increase it?