My Topamax journey

Hi all

Well I titrated up another 12.5 mg yesterday to 75 mg.

My daily dizziness seems to have worsened again! The jump to 62.5 was easy but 75 mg , I feel knocked around and when I move my head I feel that awful ’ motion delay’ really badly. I’m hoping it will settle again. Perhaps it’s just because it’s a higher dose and I do feel more ’ drugged.’ My head feels so heavy and swimmy.

I haven’t had any of my severe vertigo attacks that keep my in bed for a week since being on it ( to date… Touch wood!) my daily dizzies are still there though and fluctuate in severity. I think my positional vertigo is a bit better.

Visual stuff hangs around like the ’ swimming carpets’ when I stare at them and sore head in sunlight etc.

I’m just wondering, those of you on meds, what do you consider as ‘better?’.

Do you still feel a bit off balance now and then , any dizziness if you swing your head around quickly? How is your light sensitivity? It’s hard to know what you should be aiming for .

I feel a bit deflated tonight feeling so bad on the 75 mg. I know I need to ride out the first week again. It’s just exhausting when you start feeling like you are getting somewhere.

Xx

Hi Aussiegirl1982,
Well done on getting to 75mg, :smiley:

clarity seeker how long have you been on both of your meds for? Which one seems more effective or do you think it is the combo that is doing the trick? did you have any trouble with walking/balance and did either of these help with that?

thanks for posting a success story that was lovely to read!!!

Thank you Clarityseeker.

I really appreciate the positive thoughts. It’s weird because almost every time I increased my dose, my dizziness and ‘drunk feeling’ got worse, yet each time I feared it was worse than the last! Hopefully this too shall pass :slight_smile:

Thank you for sharing your story. I always love reading success stories. I am so happy to hear. I hope that you continue to feel better and better !

I am on ciprimil with the Topamax but only because I was put on ciprimil long before my MAV diagnosis when a GP told me “dizziness is often anxiety related so I better take an anti anxiety med.” Looking back it makes me mad. The ciprimil did nothing for my MAV symptoms over the years. I was still getting severe vertigo attacks that lasted over a week with my period (bed ridden unable to move my head.) Hence why I was put on Topamax with a MAV diagnosis. I wish I could stop taking the ciprimil and try another more anti anxiety med that is more proven against migraine.

The withdrawals I get when trying to wean off ciprimil have been horrible so I decided not to try to do that while trying to increase Topamax! Too much going on at once :slight_smile:

Anyway, thank you again for getting back to me. It’s really comforting.

xx

Hi Aussiegirl,

I have been on 100mg of topamax for about 4 weeks now.

For some reason going up to 62.5mg was easy for me too. It was so easy I actually considered skipping the 75mg and going straight to 87.5mg, but chickened out at the last minute. Then, getting up to 75mg ended up being really, really difficult!

If it gives you any hope, 87.5mg was alot easier after all. Weird stuff, topamax!

The first couple of weeks at 100mg had me wondering what had possessed me to take this on, with all the worsened symptoms, extra side effects, etc, then last week I had a magic 3 or so days where I was almost my old self! My husband and I were able to work together on our property again, and I would have written praises to topamax all over this website but I was far too busy! But then I crashed, and since then I have been worse than ever. Obviously I overdid things, combined with an intense weather system, and hormonal things.

My headaches have always been bad, but at about 87.5mg, they began to become more mild, and although they have never disappeared (yet), there are times when they are so slight that I have to think about whether I have one or not. I also had severe vertigo attacks every 2 months on average, and I haven’t had one since January, so something’s helping. I’m still woozy (especially at the moment) but felt none of that during my magic 3 days.

When people write their success stories, they never say that all of a sudden they had a long string of really good days that never ended, they always say they had a good day, then a few good days, then a good week, then a few good weeks, etc. The only way to have that, is to have those days and weeks separated by ‘less good’ or even bad days. My magic 3 days could be my beginning of that. Yours could be just around the corner too!

Hang in there. I know just how hard it is, believe me.

Hi Aussiegirl,
Thanks for your well wishes, I find it hard to share my thoughts - This whole migraine thing really brings you in on yourself, you become the migraine, its so consuming and exhausting. Even now - I am at the point questioning have I had enough water today, will this food trigger anything, can I eat this, don’t stress out too much, don’t over do it, don’t stress about everything your stressing about!!! it goes on!!! I have been seeing a psychologist - she sees a lot of MAV patients etc … my Nuro put me onto the group. She has been great, got me to relax about the condition, really got my anxiety levels down, and got me to view my condition in a different way - which I feel has helped. Janet is also I believe right, I too had a magic 3 days (over summer) completely over did it (painted outside windows) crashed and burned. But just like she has said those better days increased and so I’m sure will yours.

Hopefully you will be on 100mg of Topamax soon and going along nicely and ready to tackle ciprimil! I agree with you, one thing at a time. No rush!!

Hi Sarahd,
I have been on the combo of Topamax and Lexapro for about 6 months - I would say mainly the Topamax controls most of my symptoms, the Lexapro takes the “edge” off. I used to get a “swimming” dizzy followed by what seemed to be panic attacks - felt like heart attacks they were dreadful, then the brain would “buzz” for weeks. Now that I’m on these doses these have all settled (I’m touching wood as I type this!!). :smiley:

Janet,

Thank you so much for your post. It’s so reassuring to hear from others going through the same thing.

I can really relate to feeling better for a few days and trying to do a million things at once. Isn’t it an amazing feeling when the dizzies lift! When I feel good I always find myself wondering how ‘normal people’ aren’t skipping around singing day in day out. It’s such a good feeling!

It’s funny how your jump to 62.5 was easier than 75 also! 62.5 was so easy for me that I didn’t really even think about the jump to 75 and it has knocked me around- even a week later. Now I am also really worried about the next jump, so it’s nice to hear that it may not be that bad after all.

It’s great that your ‘attacks’ have stopped too. Mine have also at this stage (touch wood) but I just can’t shake this daily dizziness. I think you are right though. It’s not all going to happen overnight. I have been ‘dizzy’ for 20+ years so I doubt my brain even remembers how it feels to not be dizzy everyday. I think I am so tuned into it that it may take a while to break.

I really hope your magic 3 days are the start of good things for you. Do keep me posted. I’d love to know how you are going! Topa definately is a rollercoaster and it’s nice to know you’re not alone :slight_smile:

How are you going now Aussiegirl? Has it settled down? I hope you are feeling much better!

Unfortunately my ‘crash’ has continued. I think the oestrogen lowering side effect of topamax is the worst part of it for me, being peri-menopausal. If I was 10 years younger or older I’m sure this would be alot easier! It just seems to magnify all the (already erratic) hormone plunges. I wonder if anyone else has noticed this?

Janet

Hi Janet

How are you going?

I am going ok thanks. Still on 75mg. I got through another menstural cycle without a disabling vertigo attack - just a couple of dizzy spells.

Overall though, still plodding along! Def more headaches (dull) on topamax than before but less severe dizzy spells.

It,s hard to know day to day what to expect though. Some better than others.

How are you doing?