The Vestibular Migraine Community

Topamax Gave Me My Life Back


#102

Hi
I tried pamelor only for a little bit maybe a month and a half I probably didn’t give it enough time though. I am going to try topamax again and then if that fails ( I hope not I hate taking and trying drugs) I’m going to try your approach because I also heard that is the next best thing. Wish me luck and good vibes and thank you for responding.


#103

Hi Lisa
Thanks for your reply. Yes I am just nervous and paranoid to take the drugs. Guess it’s part of my anxiety this whole mess has caused me. I can’t say I had any bad side effects on any of the drugs that I couldn’t deal with besides the Zoloft (too high) the topamax was tolerable for the most part besides the bc interaction but I will take that over how I feel cause I feel so bad. Anyways thank you again and wish good vibes toward me with my continuing journey.

Best wishes,
Nay


#104

Thank you for describing in very understanding manner. It will really help lot of people. I also got dizziness four months before, my dizziness got better with prochlorazine and sarc, and I stop taking medicine. I felt better for 10 days. I got my migraine and right ear pain back, which is almost 24 h. I am on topiramate now. It is my second attempt. First time I quit when I reached to 75 mg as it made me very dizzy. Now I started first week with 25 mg at night time and second week 50 mg night time again, so far I did not see any improvement in my pain. I am also in research field and off from my work. Your story is giving me courage that one day I will get my life back.


#105

Hi Chemistry,
I am sorry that you are experiencing MAV. It is very difficult to work with dizziness and also trial drugs at the same time - it is good in some way that you are away from research at the moment. When I got MAV I was the head research associate and I was responsible for recruiting human participants for various studies for a principal investigator. If a certain number did not get recruited she would lose her funding. I was under a huge amount of stress which only added to the dizziness. I backed down on the Topamax a couple of times because it only made the situation worse with the dizziness. Trying to analyze data, write articles, do presentations, all with the feeling that the floor was moving was extremely challenging.This whole MAV period can only be described as horrific.

I finally reached an end point when I had enough and gave Topamax another try. Again, it made me feel worse but as I wrote above, the dizziness and most of the other side effects do subside with time.

With Topamax my neurologist suggested that the titration should be slow and stay at each titration level for a few weeks until the dizziness subsides. By doing this one gets a better understanding of their target dose.

Good luck to you - Lisa


#106

I have been dizzy almost three months prochlorazine 5mg and betahistine 16mg three times a day gave me relief from my dizziness. I don’t have dizziness now but my right ear pain all the time and back of my right head neck and shoulder pain, numbness in my face and needle feeling in my face too. doctor put me on topamax two weeks before, right now I am on 50 mg night time. So far I did not see any improvement.


#107

Thanks Lisa. I can understand how hard it could have been when you had to work in that situation. My dizziness is better now. But my right side ear and head, neck and shoulder, eye pain doesn’t go at all. And I don’t have symptoms like as all other people describe. I get numbness and needle feeling in my whole face. I can hardly work for a while than I have to take rest as my head start feeling very heavy.


#108

Hi chemistry, I get the numbness and tingling in my face. When that first started, I had a pin point headache and the numbness and tingling started with my mouth, tongue and gums. I went to my PCP the next day and she did absolutely nothing for me because I was scheduled to see a neurologist in 4 weeks (I had been dealing with dizziness for 3 months at that point). 3 days later I started having muscle spasms in my face. In 2 weeks it spread to my from mainly the left side of my mouth to my right eye. My neurologist said for facial spasms, they normally put people on Tegretol, but I had a severe allergic reaction to it several years prior, so he put me on Topamax. At the time I was more concerned about the facial spasms and numbness and tingling than the headaches. I did not tolerate Topamax very well at all the first go around, so I decreased my dosage and stopped within a month. I had my first VNG 2 days prior to starting Topamax, so I’m not sure if it was the Topamax that really flared my dizziness or the VNG - I don’t know how long Topamax stays in your system.

On my follow up appointment with the neurologist, he put me on Propanolol. That increased my headaches to pretty much all day, everyday, but my dizziness was better (at that point I had been to physical therapy for almost 6 months also, so I don’t know if it was the Propanolol or the PT or combination). My bp was so low, he could not increase the Propanalol so I said I’d be willing to give the Topamax another go to try to get rid of the headaches - it was really the only thing that worked and kept the muscle spasms in my face to a minimum (they look like I have something crawling under my skin).

My headaches are typically short in duration, and rarely in the same spot, unless I’ve been exposed to loud sounds (like an MRI). Then it’s an all over headache that makes me feel nauseous, that only migraine medicine will get rid of - rizatriptan. I’m currently on 50mg at night and 25mg in the morning of Topamax. I think I’m tolerating it ok. I only have muscle spasms once or twice a week. Headaches are only a couple times a week, but nothing every really makes the numbness and tingling go away. The only thing I can think of is that the facial nerve runs beside the vestibular nerve and whatever is affecting it is also affecting the facial nerve… I have only had an audiologist and my dentist confirm my assumption…


#109

Thanks for explaining. Finally I can correlate with someone. My whole face flare up if I have to discuss something. I did not see any change in my ear and head pain so far with 50 mg of topamax. last time I quit when I took 50 mg at night and 25 mg at day time. I could not tolerate. I did feel better with prochlorazine and betahistine but I don’t know my neurologist like topamax better and want me to continue for one month with same amount. Can you work with all those symptoms?


#110

I work from home. Some days are better than others. I’m a programmer and some days I can read something and understand it and other days it’s just hopeless. Sometimes I can take a nap for lunch and come back better. Tegretol, Topamax, Propanolol and meclezine are the only meds the doctors have talked to me about - I guess it’s because in the beginning I couldn’t figure out my triggers and nobody can figure out what is causing my dizziness (I didn’t fit one diagnosis). I do get migraines, but have had them for 20 + years before the dizziness started and only every few years, typically after I was really stressed out and then things were resolved so to speak. My main trigger for both dizziness and the numbness in my face is sound (loud or high pitch).


#111

I only completed two weeks with topamax with 50 mg. My eyes are getting dry and burning, and after waking up in morning withing three h I feel like I want to go back to sleep again. Before MAV my life was very active and now having hard time to do small work, became so lazy.


#112

Does anybody in this group having problem with their eyes with topamax. Please share.


#113

Hi;

During the titration did you get migraine as well? As I started with 25 mg about a month ago and I started getting headache which lasted for two weeks, and other symptoms also continue. I am currently on 75 mg gradually and having lot of headache, even this time tylenol did not work, althought I try not to take tylenol, but I had to take as my headache was getting worse. It’s been 4 days where I increased my dose from 62.5 mg to 75 mg and having lot of headache. Any advice. I am going to see my neurologist in three days. In one month I did not see much change in my condition. Before MAV I hardly have migraine once in a month and from last month I am having everyday, I don’t know because of topamax or what.


#114

Hi Zoology,

not sure if you still use this account anymore. So glad you have your life back! If you don’t mind me asking, while being on medication did you still have triggers such as foods? or did you find that that your threshold got much better at tolerating this :slight_smile:

if anyone wants to reply to this comment that would also be very appreciated.

I am currently 22, only been diagnosed with VN for now however i suspect VM as i have noticed some triggers with foods.
Has anyone heard of VN (vestibular neuritis) ever having food triggers until my body heals?

Please, any advice is greatly appreciated :slight_smile: this condition is very debilitating and making my life currently be on hold which distresses me a lot!


#115

Hi Lisa,
I hope you are still doing well. I really do.
Can I ask…
After a lot of experimentation, I have reduced my Topomax dose by half.
This drug is so powerful.
Now, my hair is falling out like crazy! I mean, my hair was thick and healthy beyond all expectation and in the last month it has just gone crazy. Have you experienced anything like this? Heard of this? I have read so much on this but first hand accounts are best.
Thanks again,
Marg


#116

Hi Marg,
I never experienced hair loss with either Topamax or the anticonvulsant Epival but I was terrified that I was going to do so. I read on epilepsy forums that hair loss (and often extensive loss at that) could occur with both drugs.

However, I am experiencing hair loss right now from another drug that I am on - a blood thinner so I can give you some advice. This advice was also given to me back when I was on Epival to prevent hair loss or slow it down.

  1. Take biotin supplements. A new product out is Priorin for hair growth and I have recently been taking it and I have seen a huge difference. This supplement has biotin in it. I buy it at Shoppers Drug Mart. I have also seen it at Superstore.

  2. Take Zinc and Selenium supplements.

  3. My hair stylist suggested Nioxin shampoo/conditioner/treatment but I was allergic to it. (I have contact allergy to many things but this seems to work for some people in her practice)

  4. There is another supplement called Viviscal on the internet but I have not tried it.

I had really thick healthy hair and then it started falling out and I almost became afraid to wash it as so much was coming out. I made the changes with the supplements and the rate of hair loss has dropped off significantly. I know this sounds vain but I am really upset by this hair loss.

Have you mentioned the hair loss to your doctor to ensure that nothing else is going on?

Take care,
Lisa


#117

Hi Charlotte,
Sorry for the slow reply. Even though I am on a high dose of medication I still have to avoid my trigger foods for migraine. Everyone seems to have unique triggers. For me: citrus, artificial sweeteners, alcohol and MSG. Too much caffeine will make me dizzy, and certain lighting will still make me feel dizzy despite all my Topamax. Although I am functioning so much better than I did when I had full blown MAV, I certainly have to proceed with caution with what I eat and drink. - Lisa


#118

Hey Zoology! I have the same trigger foods. I’ve been OK (most of the time I feel good) on magnesium, CoQ10 and feverfew but I do have to be careful about citric acid, aspartame, MSG, too much caffeine. Tomatoes are really bad for me too because of the citric acid in them. Thank you again for all your help before. xx


#119

Hi,
Thanks so much for your advice! I purchased and have been using the vitamins. It has been just over a week, with no result yet, as expected. How long until you saw a change for the better?
If you are vain then so am I. This is just one more indignity offered by this MAV. It is outward sign something is wrong. I don’t like to talk about it, usually. I would speak to my neurologist about the terrible side effects but she won’t return my call.
Since you are from Alberta…
Have you tried to change neurologists? I was put on Topomax and left to my own devices. I did get one 2 minute phone call telling me to half my dose and report back in a month, which I have done. That was three weeks ago with no response. I know many are far worse off than me! I know this! I just want to know how to proceed and maybe get a referral for vestibular physio. I worry that a new referral will be seen as Doctor shopping. Can you tell me your experience?
Yes, I have spoken to my family doctor and she has run all the tests. This is Topomax. Funny, I have seen some improvement lately, which is great, but, losing my hair is a hell of a price to pay.
Anyhow, thanks for being there. I wish you continued success.
Marg


#120

Hi Marg,
You will need to be on the supplements for a minimum of three months to see any improvement. I know that is a long wait. My hair has stopped falling out but it certainly does not look like it did before.

Yes I did switch neurologists and the process was difficult because there is a shortage of general neurologists here (at least in Calgary). The wait list in Alberta is horrible. I first needed an MRI then I waited almost a year with incredible dizziness to see the first neurologist. I read online reviews of her so I sort of new what to expect. Well she was the worst physician that I have ever encountered. She was rude and completely dismissive of my concerns, and she only prescribed two medications: nortriptyline and amitriptyline. Asking for another medication would lead to a doctor knows best attitude. I had already been on nortripyline and it did not work so I was reluctant to go the amitriptyline route. She hated Topamax and other anticonvulsants for MAV - no reason given because she didn’t talk to patients. After a dismal second visit I decided that I need to see another neurologist.

I was lucky in that I was seeing a specialist at the chronic pain clinic here (for my leg condition) and he referred me to a neurologist at the headache clinic that was in the building. My GP REFUSED to refer me to a second neurologist. He said that the referral to a second neurologist “would make him look bad in the neurology community”. The second neurologist was wonderful - he was open minded to all drugs in the treatment of MAV. He is a professor at the university and is involved in research studies on migraine. He devised a realistic treatment plan for me and he was the only person to openly say that Topamax was a rough drug to take (some doctors minimized the side effects) but that for many people it is very effective.

As for vestibular rehabilitation my second neurologist told me to go out in challenging environments - the largest and busiest shopping malls, supermarkets, Costco, etc. I had to force myself to walk against the flow of traffic in malls on shiny floors until I felt like I was going to faint.

I know Lifemark physiotherapy has vestibular rehabilitation. When I had whiplash they had offered vestibular rehab and I asked about it. Apparently it is offered at several locations across the country.

I hope this helps. Again, if you have any more questions please feel free to ask - Lisa


#121

Lisa,
3 months! Yikes. Looks like I will be asking Santa for a wig.
Took matters into my own hands and went to the medicenter and I am getting a referral to a different neurologist. I feel guilty. I don’t know why. Maybe because the first one was the one to diagnose me correctly after years of searching.
Well, your rehab sounds brutal, but cost effective. I spent a long time getting treated for BPPV. Oh, one more treatment oughta do it. A snake oil salesman selling hope. People have to be so careful.
Thanks for sharing.
Marg