Had it with topamax! Help again!

Hi,
So, I started topamax 5 days ago and since I’ve been on it I’ve gotten progressively worse. Today is by far the worst day yet. Im so dizzy and have awful positional vertigo, my head feels “swishy” and my right ear is still plugged. The scary thing is I don’t know if it’s me or the topamax causing these horrific symptoms. Before I started topamax i could get up and move around a bit, now I am completely chair bound (I can barely make it to the bathroom before collapsing back in my recliner). before I started the topamax I did feel like I was getting slightly better vestibular wise, so I don’t know what to do? I don’t know if I’m dealing with labs on top of the mav or what? Should I work on getting the labs better then move on to the mav? I’ve had bppv 4 times over the past ten years, and I’m finding this similar although it always got progressively better. Mav never caused me Positional vertigo in the past. It’s been almost a month and I’m only getting worse.

Did anyone ever get positional vertigo on topamax? From what I read people’s side effects usually were getting better by this point not worse!

Hey Ellen,

Sorry you feel so crap.

What dose are you starting on?

However, are you sure you’re having positional vertigo and labs? A lot of the time that’s misdiagnosed and is masquerading as VM.

I would guess its both the Topamax and your anxiety working in tandem, together to cause the exacerbation in symptoms.

I would try to drop this idea of labs or bppv out of your mind as it’s unlikely you’re dealing with both. Accept your diagnosis if indeed VM is what yours is. (I’m not sure, I don’t think I have followed your whole story I’m afraid.) You say you got better the 4 times you had bppv. In bppv, aren’t they episodic and you overcome them quick quickly? Maybe you can loko back on those times now and attribute them actually, to VM?

I could be entirely wrong but it’s just an idea…

Going back to Topamax… it is a drug with a load of side effects. Dizziness, ironically, being one of them!! When I first started on it I felt woozy, light headed etc. I moved my doseage to nighttime and it helped massively.

Since I have been taking 100mg in the morning (I still take it at 5am and go back to sleep) I feel awful too. So the evidence is there that this drug does take a while to get into the system and will kick up a fuss before settling. But I do credit it with helping me out largely for the most part of last year so please do not give up hope. Stick with it.

You have ridden much worse storms thus far. It’s 5 days in, I really would stick with it at horrible side effects, as it could be your magic pill in the future if you can be patient. Would it be possible to arrange some time off work? Or for someone to take over whatever responsibilities you have while you ride out this storm??

MMx

Not sure if you are starting with a 25 mg tablet, but can you try cutting it in half?

Hi,
Thanks for the responses. I’m only taking half the 25mg dose.
I’ve had what I suspect is mav since 2003, when I had my first bppv attack. The balance issues never went away after that first time and I’ve had bppv three times since (epley “cured” the spinning vertigo which is why I do know it was bppv). I had chiari malformation decompression surgery in 2004, which also did nothing for my balance issues (walking on a trampoline). Over the years I learned to live with it an definitely had good days and it was manageable. Now I’ve been so sick for the past month, I’ve never experienced this before. I get dizzy whenever I move now, it’s awful. I’ve had to quit school and my mom has had to come stay with me since I can’t take care of myself or my family. It just feels like I’m getting worse, I don’t know what to do.

It took me a good 7-10 days to adjust to Topamax when I started and every time I upped my dose. I am currently at 100mg. I know its so hard, but chances are this is your body adjusting to the meds and if you too will take 7-10 days to adjust just think if how close you are now! I encourage you to try to stick it out. It was a game changer for me.

When you say it took you 7-10 days did you go back to your “baseline” dizziness after that, since I know I actually won’t start feeling better until I’ve been on a higher dose for quite awhile? Each day that I’ve been on this drug I’ve felt worse and worse! I’m going to stick it out, but if I can’t get back to my baseline dizziness in 2 weeks I think I’ll have to give up, because I just can’t take it. I haven’t left the house in 5 days, not even for a walk. My one event of the day consists of struggling to have a shower. Otherwise I sit and sleep in my recliner and am slowly going crazy,thank goodness for my tv and ipad at least, haha. :smiley:

Hi Ellen,

You poor thing. I really do feel for you. I upped my Topamax from 25mg to 37.5mg 2 days ago and I am so much dizzier again. When I started it and when I upped the dosage, I had more dizziness for about 7 days, then it settled back to baseline dizziness again. I am hoping when I get to the right dose it will settle, but instead of going back to baseline, it will slowly improve! Here’s hoping!

I really do know how horrible and scary it is to be stuck feeling how you are though. I have had two weeks at a time, not being able to walk around much at all with VM. At the time I didnt know what it was, but now I’m told it was VM all along (my disabling attacks always hit with my period for 10 + years.) Also, I get a lot of positional vertigo with my VM. During my attacks, I can’t lie on either side or I just swim uncontrollably in my head and it’s a sickening feeling! Almost like I’m falling through my pillow! I also have a lot of trouble lying back without being propped up on a heap of pillows or my head spins too. That can take 5 or so days to settle , sometimes even longer. It’s like a nightmare when it happens, so I can imagine how hard it must be to keep swallowing the topamax for you.

Then there’s other times that I get dull positional issues when I lie flat on either ear. This happens even when I’m not in an attack sometimes and it can last a week or so. Even longer. I have been tested for BPPV during these periods by an ENT and top neuro and both said it’s central as there is no eye movement and it’s most likely VM related. I often wonder about the positional element too but I have read that can be MAV. I’d love to hear from others too?

I think it would be really great if you could try to hang in there on the Topa for even just a week? If you are on 25mg, perhaps drop to 12.5mg. There is a chance that you may have had this rough patch anyway, so it would be crappy to drop something that could help you longer term?

Do you take any supplements? I am also taking a strong B12 and magnesium with my topamax as back up. I assume anything is worth a try! In addition to the dizzies, it also seems to give me headaches when I up the dose! Oh, the joys.

Try reading the success stories on the site. Lots struggled before getting better. I know how yucky and hard it is though and I’m thinking of you. Contact me anytime! I am on this Topamax journey with you :slight_smile:

HATED topamax–I fought it and argued every visit with the doctor for three months! I was started at a stupid dose of 50 mg which knocked me on my arse and scared the potato chips out of me!!! That was not a good start for one. Then they took me back to 25 mg which was barely better. I then took MYSELF down to 12.5 mg and sat on that dose for nearly a month before being brave enough to add another 1/2 pill. I literally stayed at 25 mg for another month, swearing to the Dr. that I was feeling better–and really I was, but I had no idea what another 75 mg would do for me!! I figured it would kill me so why try :shock:

Eventually–having found this site–completed a LOT of research, and taking it ultra slow at 12.5 mg intervals nearly 3 weeks apart in increases, I made it up to 100mg, and I am sooooo much better than I ever could have imagined. I’m not “normal” but I can ride my stationary bike a bit every day. I just walked to and from the tire repair dealership near work to drop off and pick up my husbands truck without worry that I’d be “no good for the rest of the day.” I may not be any good, but chances are, I’ll be fine, which happens more often than not these days, so instead of worrying, I go for it–which I NEVER could have done three months ago!!!

I actually have more headaches (mild) and visual symptoms now (light flashes and such) than the dizzies and severe nausea, but I still get those too some. But I can see the outline of the tunnel now and I’m soooo thankful that I was able to get through the topamax hell that was the first two months of treatment. I understand your fear, frustration and even anger–and I’d TOTALLY understand if you gave up on the drug–but give it a solid chance. It really messed with me for the first month–after that I adjusted, and even the increases were fairly easy to tolerate.

G’luck.

hi dolvner,

are you going to stay at 100 mg or go up anymore? has it helped with balance/walking? are you on any other meds/are you going to add any? glad to hear things are going well and thanks for the inspirational message about topamax. i cant believe you were started at 50 mg that is insane for a MAV’er!

Glad to hear that your dose increases went more smoothly after the first month. Do you all know if people feel better on just 25-50mg? At the rate I’m going it’s going to take me so long to get to 100, haha. I decreased my dose last night (went down to 7mg) and feel a lot better today. I just needed some emotional relief. I think that as long as I know it’s the topamax causing the increased dizziness it’s not as scary and I’m more willing to stick it out. Thanks for all the encouragement!!!

Hi Ellen
Good on you - decreasing the dose for a while will give you some breathing space. I’m not sure anyone actually feels better after just 5 days on the med. It’s hard to find out that when people say “it’s not easy to get on this med but definitely worthwhile” we somehow skip over the ‘hard’ bit & focus on the worthwhile.
It’s 7 weeks since I started Topa and have got to 37.5mg. It hasn’t been easy - more headaches than before, dizziness & feeling nauseous. My other meds haven’t been this hard to trial but THEY ALSO HAVEN’T HELPED!! Seven weeks is short compared to all the other weeks I’ve wasted!!
dolfnvr - I have printed off one of your posts re increases & when I feel ‘tempted’ to push the dose up quickly I re-read your post about taking things slowly. My brain doesn’t like changes & reacts very strongly to even the smallest med increase so I’m giving it plenty of time to adjust each time.
MM - You say are taking 100mg Topamax at 5am in the morning - can I ask the reason for this? Isn’t Topamax sedating? Do you work at night? At the moment I’m taking my dose in the evening & have been reluctant to take any in the morning in case it makes my ‘dopey’.
Barb

Barb, when you hit each milestone and stayed there for awhile did you feel slightly better? I know I keep asking the same question but I’m wondering if people felt better at doses lower than 100mg. Also, do you take anything for anxiety? I’m thinking of asking my doctor for something to get me over the hump, since my relaxation techniques arent touching how I feel.

Ellen - each of us is different so it’s hard to have a ‘graph’ that is going to show how you are going to be at each stage. When MAV hit (2010) I was housebound for months with daily horrific headaches & could only get around the house using a walking frame & bars in shower, etc. The rocking, dizziness, balance, visual vertigo etc was 24/7. Eventually, (2012) after a few med trials the Dothep ‘contained’ the headaches, improved balance to a degree but still have the visual vertigo. So this is why I’m trialling Topamax in addition to taking Dothep.
Starting the Topamax a lot of my ‘old’ symptoms returned - the headaches, daily dizziness, worse visual vertigo, nausea, tiredness, etc. I felt very depressed about it & at times, convinced it wasn’t going to help me. In the first five weeks up to 25mg with no noticeable improvement in symptoms although I was less nauseous & had had some physio treatment & felt a bit better by week 5. I decided to increase by 12.5mg and since being on 37.5mg the headaches have lessened, the nausea reduced & had a few occasions where the visual vertigo has not triggered. For me it is a milestone and hope there will be many more. As to what dose I might need to get my symptoms under control is a ‘wait & see’ but am hoping that I’ve ‘turned the corner’ & from now on I won’t regress!
Do ask your Doctor for something to help you get through this initial anxious time. My doctor prescribed Ativan (.5mg) taken when needed because it is ‘quick acting’ but there are other meds that can help. This a very stressful time to be going through and we can be thankful for any help we can get!
Barb

Thanks, Barb. I feel like the neediest poster on this forum, haha, I’m just so desperate for relief, it’s nice to have people who understand. Along with my anxiety I need to work on my patience as well, I suppose and just wait and see with topamax. I think small steps, I’m focusing on getting to 25mg, instead of wondering how the heck I’ll get to 100!

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I’m focusing on getting to 25mg, instead of wondering how the heck I’ll get to 100

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PERFECT STRATEGY!!!

And, remember. Take it slow and easy. It isn’t a race. The beginning is the worst, after your chemistry adapts, it isn’t nearly so difficult to deal with the med.

My worst argument against dopeymax was how it made me so darned STUPID. I couldn’t think of words, forgot what I was talking about mid-stream, was a complete idiot for weeks and I work in a job that requires public speaking and on your toes thinking. I was so afraid I was losing my mind and that I’d never get it back–but I swear to you that I did, and now, at 100 mg I am able to think of really good “college” words :lol: during conversations and I can keep up with the best of them. I train teachers regularly and stand in front of large crowds of educational administrators to speak about all sorts of stuff that is controversial and upsetting (not hard to do in education these days) and am able to keep up with the banter without much trouble (some trouble sometimes but mostly ok). It really does get better–but it takes time and the dreaded patience that is so hard for most of us to find.

Hi Ellen

I’ve had relative success with Topamax and just wanted to let you know that I, too, struggled quite a bit with it but persevered and it helped quite a bit, but it took a long time to see any benefits, so, as others have said, you have to be very patient with this drug!

I did it at steps of 25 mgs and the first few weeks were very very rough. But I read loads of posts on here so knew what to expect and had trialled a few other drugs that hadn’t helped, so knew I had to suck it up and give it my best shot. It gets better, I promise! I already had brain fog and exhaustion, but the Topamax really made both of those so much worse! And the tingly hands - they still haven’t gone away. You just get used to it. Small price to pay really.

As for the benefits…

I’ve had migraines for years. Used to have 1-2 a month for 15 years, but never took anything because I hated the side effects and hated being on meds. But they got worse, up to 1-2 per week. The Topamax has helped greatly - now about 1 migraine every 6-8 weeks. Much more manageable. Still have the dizzies, but on a lesser scale. I can go out more, have more energy to play with my daughter, do housework, go out with my family, etc. But I still get sick when travelling (and this makes me dizzy for days afterwards) and using the computer for extended periods and I still get dizzy when I do too much and when I wake up or eat wrong, etc., so I’m not quite there so Dr S has added another drug to the mix. But Topamax has given me a good part of my life back, and I’m thrilled for that. Six months ago I could barely get off the couch to play with my daughter and spent most of the weekend at home while my husband and daughter went out and about, and now I get to join in, so I call that a success. So give it time and be patient - the side effects are awful at first, but every time you titrate up, you feel them a little less.

But note that I didn’t feel better on Topamax until I hit 100 mgs and was on it for at least 3 weeks (I started taking it in September and didn’t notice an improvement until Christmas time). It takes a long time to build up in your system. Others have had success at lower doses, but it does take a long time to build up, so don’t give up on it too early when you don’t notice anything. I think I posted with frustration when I had hit 100 mgs and hadn’t felt anything positive - it’s definitely one of those drugs that you have to trial for at least 3-6 months before you truly notice anything, depending on how slowly or quickly you titrate up.

Good luck!

Jennifer

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MM - You say are taking 100mg Topamax at 5am in the morning - can I ask the reason for this? Isn’t Topamax sedating? Do you work at night? At the moment I’m taking my dose in the evening & have been reluctant to take any in the morning in case it makes my ‘dopey’.
Barb

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Sorry, no, I take 50mg before sleep at around 11pm.

Then I wake up at 5am and take 50mg.

Dr S told me to take it at 8am when I get up but if I do- I can’t work. It’s too sedating.

In the past I was taking just 50mg at night. I’d prefer to be taking 100mg at night. Does anyone else do that?

MM–

I’m on the 50/50 protocol as well. I beleive this is the preferred method, as it keeps the chemical at a steady level in your brain throughout the course of the day and night. less of an up and down over time.

I started noticing a slight decrease in my symptoms at 50mg and my vertigo went away completely at 75mg.

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I started noticing a slight decrease in my symptoms at 50mg and my vertigo went away completely at 75mg.

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WOW!

How long did it take?