Topamax just prescribed by Neuro doctor for vestibular migraine

Hey Yanksgirl thanks for the update, sorry it didn't work for you, I can't say it's working for me either just yet but I'm on 1/4th of a pill right now so maybe in a few days when I take half a pill, I might see something different. I have noticed I get a throbbing mini headache at times since using it. So I'm cautiously evaluating the risks vs reward as I take a higher dose, it's ironic, I usually don't get headaches but this med is causing it. Also I have felt a little weird in terms of mood on and off but I don't want to give up on it just yet because I want to know the cause of my symptoms.

Vicki I have heard of other meds too, apparently in the UK the doctors are very familiar with MAV and they prescribe different medication than topamax so maybe those would work.

 

Just to update you, today is my 9th day on topamax and in general I haven't noticed any improvements, actually the opposite. I'm not sure how long you're supposed to take it to see any effects, my neuro didn't specify, nor did he specify if it's one of those things where you get worse first before you get better, but I think if that were the case he'd mention it.

Yanksgirl did you ever do testing for menieres like VEMP, ENG and all the other stuff? Did they say anything like they found above normal pressure in your mm ear? I ask because when I told my Neuro about MAV he said he didn't think it was that because the tests found extra pressure in my ears and that is the issue. So that is another reason I'm reluctant to keep going with topamax especially when I see no improvements and actually feeling worse.

 

prozeal, from what I have read, people feel lousy on topamax for about 2 months or so then start to feel better.
You might want to join mvertigo.org which is a MAV forum. Many posts about topamax on there.

 

Not sure of its relative strength to Topamax, but I am prescribed Pizotifen (1 x 1.5mg at night time) for the MAV component of my Meniere’s. It might be worthy of consideration as an alternative for you yanksgirl? I recall building up to that dose over a period of weeks BTW.

 

Topamox side effects can be too hard to handle for many, I don't blame you one bit for stopping it. But there are many other migraine meds w/o such severe side effects, but also I understand why you had enough dealing with side effects being medication sensitive myself.

Maybe one day you will feel up to trying another.

 

Yanksgirl,

So sorry to read that the topomax wasn't tolerable for you. It must be so frustrating to be sensitive to meds. You have a remarkably positive attitude given what you are suffering.

I haven't read your earlier posts, so my question might be redundant. Have you tried eliminating possible food triggers? Some are sensitive to gluten, dairy, nightshade, etc. I know you are at your wits end and I don't wish to frustrate you further with suggestions you may have heard before.

Here's to some relief for you, yanksgirl

Maggie

 

I see, I have stopped the topamax as of two days ago, I couldn't handle it for the time being. I will soon go for steroid injections so I need some sanity and also not to dilute the two at the same time. I will definitely check out that forum it seems useful, thanks!

Ok thanks for that info. As you can tell I have stopped taking for reasons listed above. I'm going to do my own research and figure out a natural way to reverse this if it is infact MAV. I'm seeing some parallels for example, my own Neurologist has migraines himself and he has so many accreditations and plaques on his wall and he's a nice person too. It got me thinking he had to spend a lot of time indoors studying and reading. Then it got me thinking how the UK seems to have great doctors that recognize and diagnose MAV easily. UK being mostly rainy and without sunlight, and my doctor here who must've spent so much time indoors studying to get all his accreditations, degrees and myself who also doesn't get much sunlight, I see there could be a link to Vitamin D and it's cofactors like magnesium and calcium, vitamin k that maybe the balance has been disrupted causing MAV.

Coincidentally magnesium is one of the things doctors recommend to patients with migraines as it's a calcium channel blocker, MSG is a calcium channel opener and why forbidden to people with MAV. I know that personally I don't consume much milk or dairy as it gives me more sinus issues or mucous build up so my calcium and vitamin D maybe low, perhaps because of low calcium we are now calcium sensitive. So we may have to increase vitamin d and calcium and everything else that works well with it slowly over time and maybe that would reverse it? I'm not sure. I'm posting this so maybe someone can run with it or make a connection.

I just did a quick search for how topamax works and this is what it says on the official topamax website http://www.topamax.com/tools-resources/faq
How does TOPAMAX work?
Although the exact way TOPAMAX works is unknown, it's believed to help "calm" overexcitable nerve cells in the brain so they don't send out the signals that can cause migraines.

Now I just did a search for calcium's role in the nervous system and found this from http://www.livestrong.com/article/505869-calciums-effects-on-the-nervous-system/ (note their information uses references and it's listed at the bottom of the page, example Linus Pauling institute regarding calcium):
The main role calcium plays in regard to nervous system function is in cell signaling. Calcium is important in the contraction and expansion of blood vessels, nerve impulse transmission........etc. So thus the term "throbbing headache" I'm guessing is the blood vessels expanding and contracting too rapidly or intensly causing a disruption in the proper flow of nutritients to the brain which affect the proper signaling inside the brain. Vicki I know you look for these links too so if you can make sense of it more be my guest, I'd like to see what John of Ohio thinks of this as well. It's hard for me to read much text on the screen as my neck becomes tights etc so I have limited time at the moment to look into it but I really think that this can be reversed.

 

I will definitely read over the links tomorrow and see what if anything I can figure out but I did want to say, many people also get botox injections for MAV, its approved to treat migraines. I am not suggesting it I am just letting you know. You might want to research that as well.

 

If you read through some of the migraine/headache forums, you notice a common theme - many users often refer to Topomax as "Dope-a-max". The cognitive effects can be significant. As a chronic migraine sufferer, it was one of the many drugs that I tried. I can't gauge it's success as after a few weeks, I became so forgetful and lethargic that I bailed. After just a week off the drug I couldn't believe how much better I felt. I still get neurologists that want me to try it again for my chronic migraine. It's not going to happen.