Anyone used Topamax?

Medication 💊 Anticonvulsants
1

I was diagnosed by Dr Hamalygi as “probably” suffering from MAV. Since I don’t live in Sydney I have a different neuro. who I have only seen twice. First time he gave me a med. (can’t remember the name) that seemed to do nothing except make me put on weight. I’ve finally gone back to see him again as I had a bony growth above my ear on my mastoid which is a benign osteoma tumor. Apparently it is nothing to worry about but I wondered if it might cause headaches and dizziness? Doesn’t seem to be much info available and the neuro. said no he didn’t think it would.

He gave me a script for Topamax. I’m terrified of taking it due to the side effect profile it seems to have. I have two small children and already suffer from terrible fatigue. Don’t really fancy feeling even more tired. I don’t know how I’d function. Has anyone had success with Topamax and at what dose?

Also wondering if it’s common to suffer from constant crushing fatigue as a symptom of MAV?

2

Hi Dizzyloopy,

Check out these previous posts for Topamax info:

search.php?keywords=topamax&terms=all&author=&fid%5B%5D=9&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

Best …Scott

3

Hey,

I am from Brisbane and went to Sydney to see Dr Hamalygi who said i ‘probably’ have MAV also. He prescribed 25mg of Prothiaden (which i took for about 4 months and did nothing so i stopped taking it)

Anyway so i went back to my neuro in brisbane and he prescribed Topamax. It took me about 1 year before i built up enough courage to take it as i am only 24 and didn’t like the idea of taking a hard core medication. Anyway to cut a long story short i have been taking it for about 2 months. i am currently on 50mg. I haven’t had ANY side effects apart from a bit of tingling in my feet every now and then but nothing major. i have not been fatigued at all and i work full time. i will aim to get up to 100mg but by increasing the dosage at a very slow pace the side effects are very minimal so i would definitely recommend this. A few people i know started this medication straight up on a full 25mg tablet and gave up after a couple of days because the side effects were unbearable.

My doctor was extremely strict in the dosage incrimentations. This is what his instructions are:
Week 1 + 2: 12.5mg night
Week 3 + 4: 12.5mg morning + 12.5mg night
Week 5 + 6: 12.5mg morning + 25mg night
Week 7 + 8: 25mg morning + 25mg night
and so on until maximum dosage is reached or symptoms are controlled.

I did start to notice an improvement in my symptoms but the last couple of days have been a bit rough so it’s still early days. But definitely give it a go!

All the best,
Ella

4

Dizzy, I didn’t like it as it gave me nausea and my thinking got kind of whacky. It was hard for me to concentrate, make decisions, etc. I only lasted 3-4 days on it. Also, I had a possible allergic reactionto it. But that’s just me, some people have great luck with it.

5

Dizzy - my experience was very negative I’m afraid. Within two weeks I was a weeping wreck, lying on the settee all over Xmas wondering if I would be alive the next Xmas and crying, crying crying. Also completely unable to concentrate on any task at work. It was like being in some kind of nightmare. Lost appetite completely and developed a huge mouth ulcer which may or may not have been related. Terrible nightmares when coming off. Did nothing at all for the dizziness.

However…despite all that I have considered a re-trial! The “slow and low” regime as Ella notes was suggested to me by another neurologist. It seems to have a good response. The reason i haven’t tried it is due to my GP who thought it a bad idea given how rough I was on the original dosage.

Anyway, as they say, every person reacts different to medications and topirmate has a big fan base with excellent results for many.

6

Hi Dizzy,
I am currently using topamax. I am up to 150 mg. I agree that starting low is the right thing to do. I began at 6.25 mg per week and added that amount weekly until i reached 50 mg. Then I went up by 12.5 mg per week until 100 mg. And after that I was able to add 25 mg every week. In the beginning the side effects I experienced were tingling in my fingertips and sometimes my toes and occasionally in my face, but nothing too bothersome. I do not experience any of those side effects anymore and have not for a long time. I experienced no cognitive side effects or anything else. If you just go up slowly you shold be fine. I truly believe that with topamax, the people that have the most problems start at too high of a dose and increase too quickly.

Also, I would recommend at least trying this drug because I think it is a bit different than the anti-depressant class of meds in that it shouldn’t increase your MAV symptoms initially before it starts to work. It may not help them, but hopefully it will not make them worse. At least that was my experience.

Good luck if you decide to forge ahead with this med.
lisa

7

Thank you for all your repsonses. Seems it’s best to take it slowly. Have any of you experienced a positive response ie lessening of symptoms?

Scott thank you for the link but it doesn’t seem to work for me.

Ella I’m from Brisbane too. Who is your neuro. and is he/she well informed as far as MAV goes? Mine seems to have a limited understanding though at least he knows it exists! Has the Topamax helped you at all and in what way?

Does anyone else experince awful fatigue 24/7 with MAV? I’m not sure that this is a MAV symptom or somehting else? I find the fatigue and the yucky dizziness, also 24/7, are my most bothersome symptoms. I have headaches all the time, particularly around that time of the month, but the intensity has lessened over the years. Sometimes I simply get the aura and a slight headache. I’ve had migraine since I was 14 and I’m now 44 and they seem to have evolved into mostly dizziness and jumpy vision. I’ve had this dizziness since 1992… I do take Xanax daily which takes the edge off the dizzies and I haven’t needed to up the does. Without the Xanax I don’t know where I’d be!

8

Dizzyloopy,

Clicking on the link should bring up a list of past forum topics with Topamax in the subject heading. Just checked it again and it was ok at this end. Are you not getting that page at all?

Scott

9

WOW I can’t believe you’re from Brisbane too!
What sort of ‘dizziness’ do you have?

I just realised it was actually my ENT who prescribed Topamax. he was dr andrew lomas who is one of the best for balance/dizziness in Bris. He and also Dr Halmaygi in Sydney said I may have MAV but there is no way to really be sure. My neuro was Dr Bradfield - but he wasn’t really convinced about MAV. He though the problem was cervicogenic disequilibrium (ie. coming from my neck) I’m not sure if he is really educated about MAV because he just dismissed it. Which neuro have you seen? Maybe we should look into finding a Migraine specialist.

10

Hi Ella,
I’m also from Brisbane and Dr Lomas was the ENT who told me to see a neruo as Lomaz thought it was migraine.

Jen

11

Scott - fyi, I clicked on that link too and got “no suitable matches found”.

Dizzy - go to the main page and type in Topamax in the search box instead. It will bring up lots of detailed discussion of the topic, including posts by me.

In short, I use the med. Am on 75 mg. I tapered up slowly, 15 mg each week (two weeks I think I stayed at 60) and had only minor side effects. Keep in mind the first two weeks you may feel poorly overall as your body adjusts to the medication though. I got up to 100 mg, but it was affecting me cogntively too much, so I had to drop down to 75. It was prescribed by my doctor who is a neurologist who specializes in migraines. I don’t quite understand why YOU are being prescribed it though. Are you having migraine issues? Topamax is primarily for that; if you are having balance/dizzy issues, other medications (benzos) are used more often.

Best, Bonnie

12

I’m using it, and it seems to be working for me. My worst symptoms came on during a perimenopausal hormone spike (I could tell because I felt such discomfort that I postponed a mammogram for the first time in my life) followed by a drop (I could tell because there was no more soreness): that’s when the tunnel vision plus severe dizziness started. After about 3 months at therapeutic dose of 100 mg Topamax, I was almost symptom-free.

My neurologist told me the “sinus headaches” I thought I’d been having most of my life were in fact migraines. So I do have a migraine problem, I just didn’t know it. I take Advil (ibuprofen) for those headaches - they usually don’t make me miss work.

But then I had to start a small amount of localized hormone therapy for a perimenopausal problem (how can I put this delicately - thinning skin such that it felt like I had paper cuts when I peed). After 10 days of the locally administered little pill that supposedly only lets a tiny amount of estrogen into the bloodstream, I started getting dizzy again. The medication doesn’t have to be daily forever, but to start you are on it 14 days in a row, then twice a week. Those first 10 days set me off on another dizzy trip.

Neurologist upped my dose to 200 mg. He didn’t think I needed to increase my dose quite as gradually as I did the first time - he was right. But it did take more like 4 months at 200 mg before I got to where I’m almost symptom-free again (I had an intestinal virus in there, so that may have added to the length of time). So I am a Topamax success story.

13

Maryalice,

wonderful to read a success story. thanks for sharing. just wondering what your mav symptoms were when you were at your worse.

Lisa

14

Hi Lisa -

When the first episode hit, I had such severe dizziness with tunnel vision, I figured I was going to faint. Could not walk without help.

It was on a weekend, and didn’t seem to be an emergency because the feeling passed. On Monday, I called my primary care doc. I mentioned that I’d also been aware of my heartbeat at times recently, so there was concern I might have a heart problem: I had an EKG, blood tests, echocardiogram, holter monitor, etc. (Later found out, hormone fluctuations can do that “heartbeat awareness” thing.)

I had multiple dizzy spells in the days that followed (almost daily): mostly mild, a few moderate, a few between moderate and severe (in grocery store, if I didn’t have a cart, I’d have fallen), until about 5 weeks later, and then I had two severe spells in one day: one with dizziness only, but severe enough that I couldn’t walk for several minutes, then later, one with severe dizziness that included the tunnel vision – this time I figured I wouldn’t faint because I didn’t faint the last time it happened, but it was almost as bad as that first one. Then I went to urgent care. Had a CT scan that time.

Head movements – mostly up & down, though sometimes from one side to the other – could bring on a feeling of my head still moving even after I knew I’d stopped (I think this is called head motion intolerance). Most dizziness was a mildly off-balance, “wobbly” feeling.

Got referred to neurotologist, who diagnosed migraine associated dizziness, but wanted MRI to make sure. MRI was fine, and he said he didn’t treat this & referred me to neurologist who started the Topamax.

When the symptoms came back the second time (from the addition of hormone treatment), I didn’t have any tunnel vision or any severe dizzy spells, but I did get up to almost moderate level dizziness at times, and had the almost daily wobbliness plus the head motion intolerance.

15

Thanks all for your info.

I wonder if trying the Topamax is worth the horrid side effects. As I said I already have terrible, unrelenting fatigue and really can’t afford to feel MORE tired. My horrid headaches happen around menstration and can last anywhere from 3 days to a week. I also have less intense headaches throughout the month when I use panadol or asprin. Nothing seems to touch my “period” headaches!

But my main issue is the dreadful feeling of being wozzy and lightheaded. It seems that the Topamax, according to what I’ve read thus far, doesn’t really help this problem. I do use benzo.s but I thought if I could find a migraine preventative and rid myself of the headache then perhaps the dizzies would get better too? Has any one found that Topamax has reduced the dizzy component of MAV?

16

i do not have ‘headaches’ and am on it.
i have heard mixed reports as well but it has definitely helped peoples dizziness in which they become symptom free.

from what i can understand if the dizziness is a result of ‘migraine’ then why wouldn’t it work?
whether the migraine presents it self as headache or dizziness it still fundamentally caused by the same underlying problem - which topamax somehow miraculously targets.

17

Yes what you said makes perfect sense. Where have you read about people who have had success with Topamax ridding them of the dizzies? Love to read some stories that point to it as a effective treatment. Most of what I have read is an endless list of horrid side effect.

18

I guess I didn’t make myself very clear - I didn’t go to doctors about my headaches at all. I took Advil - over the counter stuff - throughout my life for those because I never considered the headaches to be disabling. Maybe I left work once or twice because they tipped over into the moderate to severe range. Usually the headaches were moderate, and I could function. It was the dizziness and tunnel vision that started last year that scared me, and even got me to go to an urgent care center. That’s what got me the CT scan and the MRI of my brain, not headaches. My neurologist prescribed Topamax for migraine associated dizziness - if it prevents the headaches too, well, that’s fine, but that’s not my main concern, and he knows that.

Side effects from medication are not guaranteed: they’re things that some people get and some people don’t. The list they give you is POSSIBLE side effects. It’s a risk you and your doctor have to decide together if you want to take. If you’re miserable and/or scared (like I was) you may decide to take the risk. Also, some side effects may show up but wear off as your body gets used to a medication. And some may not go away entirely, but you may weigh the benefits against the annoyance and decide to keep the medication.

I get some occasional tingling in my fingers, and I see some “ghosty visual trails” when I first wake up in the morning, but I will gladly PAY THAT PRICE not to get tunnel vision or feel wobbly every single day or have head motion intolerance - plus now I can go grocery shopping without worrying I might get a spell where I could fall without a shopping cart to hold on to!

19

“rich2008” is a good example of Topamax curing dizziness. (not sure if curing is the right word)
but if you are reluctant there are plenty of other drugs to try!

if you don’t try you will never know. it just might help and be the miracle you have been waiting for.