New year relapse+topamax

Hello All,

I was reading through a few posts on here the other day in desperation. I’ve been ill 3 yrs, doing well the last year but just had a huge relapse. Off my face with dizziness all over the X Mas period, eleven days and counting. Am feeling pretty desperate.

I am finally taking the drug my neuro recommended - tompamax, (also known as topiramate I think ) started the first tablet today - 25mg, will be titrating up after a week, initially taking one tablet every other day. So far I just feel even dizzier which has been my experience every time I try a drug for migraine, which is generally why I stop them. I will have to see how it goes, I know I need to try and stick with it, just depends how rough things get.

I noticed a couple of people mentioned starting this drug, I wondered, if you are on it, how you are getting on. Any help at all?

best,

Hannah

Hi Hannah

Read about your recent relapse of symptoms on the HealthBoards the other day.
The most important thing, please, is try not to worry too much!! You have had rough
periods before, and have always gotten through them - this one will be exactly
the same I’m sure! The more you relax, the quicker you’ll be feeling yourself again.

There is a tendency for people to give up on the medications in the first few days. Sometimes
symptoms change under medication, and not always for the better straight away. It’s pretty
common to be nauseated, have no appetite and feel ill when starting a new medication. People tend
to give up as soon as anything changes from the medication, but the bad effects almost certainly
disappear within weeks. Who knows why we develop tolerance so quickly, but it does seem
to happen.

I can understand why sometimes sticking with it is not an option. If you feel worse, and you have
to work it can render you fairly useless for days. I tend to start medications on a Friday morning
and then have the weekend to see what happens - on a few occasions I have had to take a Monday
off or something like that.

I just noticed you said you were going to take one tablet every other day. Could that make
you feel worse again? I was not aware that the half life is long enough for that - I tend to have no luck
at all unless I take them consistently every day - the effect seems to wear off within that day and
you hit a valley of rough symptoms.

Adam

Hi Adam,

Thanks for your post. You know I feel such an idiot. I am always telling people not to panic as it will make their symptoms worse but this time, quite frankly, I have lost the plot. Yes, I panic every time they come back, but it’s the severity of them this time round. Not so much vertigo as a hideous surreal feeling - light is too bright - I’m grossly disorientated and lightheaded - it’s just worse than anything I’ve experienced in over a year and it isn’t letting up at all. Normally I can feel it starting to wane, like I still have one foot in the non dizzy world, but at the moment it’s just taken me over. It’s also gone on twice as long as any relapse I’ve had in a year.

You know I was wondering about the instructions to take one every other day. Apparently - according to some website or other - the half life of the drug is 21 hrs. I had the same thought as you - aren’t I just dragging out the side effects that way. I’m guessing he’s done this as a little drug goes a long way with me, tiny doses generally still equal big side effects. I might consider taking it every day. I can’t say I am over the moon about the prospect of this drug - despite assurances that not everyone gets the side effects and I will be taking a lower dose than for epilepsy etc… the fact it has the nickname ‘dopamax’ doesn’t thrill me. Aphasia isn’t something I want to add to my list of problems. The whole kidney stone thing doesn’t sound good either. The neuro didn’t want me to try verapamil - in his opinion - and it is only his opinion - it’s more effective for episodic ataxia than for vestibular migraine. My GP finally managed to get him on the phone after I expressed reservations about the seizure meds - she had a long chat with him and that’s what he said. It took her weeks to get hold of him, I only found out the info before X Mas. So I’m stuck with this or sodium valproate and he favoured this.

I think the thing that really, really freaks me out is the lack of certainty, both the neuro and the neurotologists simply don’t know if this is VN or migraine, although the neuro definitely said I DO have migraine on account of the pain I get in my face/head etc… It’s the idea that I might be taking a seizure drug for no good reason. Then again something is doing this to me and it’s more likely migraine than VN, so…

Sorry Adam, I’m rambling. If I lived a life of leisure I’d probably be able to take this better, it’s the prospect of a possible huge freelance job at the end of Jan and trying to tackle it like this that is really driving me nuts.

Anyway, I’ll work on the staying calm - clearly have a way to go, lol, and thanks again for your post,

best,

Hannah

I need to learn to follow my own advice too :slight_smile: I’m feeling pretty rotten right now, the Acetazolamide
seems to be making me feel more nauseated and fatigued than doing any good (throbbing headaches) but
I will persist with it and bump the dose up a bit.

If I were able to take a few months off work (I can’t, as I have someone to support) I would probably
be going med-free and getting into a rigorous exercise program, along with relaxation and an ultra healthy
diet. A few years ago I was handling the dizziness fine - I went through university like it, with only really
a few days off every year or so (rotary vertigo spells). But I was also exercising for 1-2 hours daily and
was very fit - I also ate well as I lived with parents who were watching their weight. I also probably had
a lot less stress then (the kind of stress you experience unknowingly, but don’t really notice).

Try some real relaxation! This might sound weird but I often lay on a mat and do some stretching exercises,
listen to music and basically clear my head of everything before bed. It seemed to work reasonably well
for the headaches at times.

Adam

Hi Adam,

Sorry to hear that about the acetozalomide - I know it went really well for you at first, so that must be tough. Let’s hope if you hit a higher dose things might settle again. I’ve got my fingers crossed for you - was really hoping this drug might be the magic bullet for you. Really strange how some people just get lucky with the first or second drug they try, 2 friends of mine kicked all of their symptoms with pizotifen. All it did for me was nearly send me mad with anxiety - the worst drug ever for me.

As you know I have been doing well without drugs for a while. I did sit and ponder that fact this morning. But the fact is it is almost impossible to live a stress free life, particularly freelance and working, the 2 things just don’t go hand in hand. I did say to a friend this morning maybe I should just do this without drugs and she said you will get stressed at some point, it’s a fact and she’s right. And stress always brings on symptoms so…

I’m still utterly crap - went for a really long walk today - trying to keep busy, get my mind off this, calm down etc… I really will try and stick with the drugs although I was cursing them this afternoon, the dizziness was so bad I felt like I was tripping. Could barely comprehend where I was. Scott has likened this to a weird acid trip at times and he’s got that right. It’s calmed down again now but highly unpleasant. Apart from take the topamax the only thing I can do is try and be as calm as possible in the hope it’ll help. I’ll take on your relaxation tip - I need to do something.

best,

Hannah

How are things going now Hannah?

Hi Adam,

Thanks for asking.

It’s been tough going but I’m hanging in there. I took the neuro’s probably duff advice to take 25mg of the topamax every other day for the first week - the last 2 days have been taking it every night. The first few days no side effects other than initially felt dizzier. Then some punishing brain fog - possibly because I stupidly wasn’t drinking enough water - have rectified that major error - learnt the hard way. As of yesterday I started to see a slight light at the end of the tunnel, was keeping well hydrated and the fog, although still present, subsided somewhat - and the disgusting light is too bright, surreal, off my head spaceyness diminished enough to enjoy an art exhibition in the afternoon. It’s very early in the morning here so no idea how today will go. Mornings are generally bad, by afternoon, I get an idea if there’s any improvement.

The jury is out on the drug really. The dopamax fog is clearly going to be an issue for me - I am still foggy - and as a writer if this becomes a permanent s/e I won’t be able to use this one. It would have to abate with time. I visited the topamax trip ezboard and people seem to have differing experiences, some kick the fog, some don’t.
There is also a significant increase in my tinnitus. My experience with drugs (short courses of antibiotics etc…) is that they will do this to my T. I was lying in bed this morning thinking - hmmm, if this drug works it might be a trade off btwn decreased symptoms and a permanent increase in tinnitus. Generally if a drug increases my T it doesn’t decrease until I get off the drug - it might be a choice I make even though increased tinnitus sucks but then it’s far less disabling than the dizziness. I think with an illness and drug choices you are often stuck btwn a rock and hard place, there is often a trade off. Unless it gets any louder with a further increase in dosage - that would be a different story.

Of course because I started this drug when very symptomatic there is always the fear that it is actually prolonging my symptoms - namely at this point I would have recovered from the relapse but my body’s reaction to the drug is now stirring things up -no way of knowing.

I have dug my heels in and am really trying to give this drug a go because I am sick to death of living with these symptoms and this recent relapse has been horrendous. So far this drug hasn’t done the one thing that has taken me off a lot of others fast - which is sedate me to the point of horrible dizziness and being unable to move from my bed - that’s good. I really don’t know, Adam, it’s such early days, I’m kind of taking it a day at a time. At the moment it looks like it’ll be a balancing act btwn - does it work, if it does is there too much fog and does my tinnitus go through the roof etc…

How are you getting on Adam. Still feeling bad on the acetozalomide or any improvement? Did u ever try topamax, can’t remember?

best,

Hannah

Hi Hannah

Not good news to hear about the foggy-headedness from Topamax. Is is getting any better yet? Also puzzling
that it increases your tinnitus.

I’m feeling OK at the moment - just need to bump up the dose again. I have tried Topamax but it makes
me quite ill (nausea, vomiting etc.)

Adam

Hi Adam,

Glad to hear you’re doing ok at the minute. Got to admit I’m having a bad time all round. My symptoms are driving me nuts. Three weeks of unrelenting surreal feelings. Unlike any other relapse I’ve had so far - bits of minor vertigo at night but other than that just stuck in one mode - 24 hour space cadet. It’s never been like this before and I have no idea why I’m like this now. The only change is that I am less sensitive to light and sometimes slightly less spacey than previously, it was initially very, very intense.

The drug is horrible. For a while I was trying to kid myself that feeling over emotional, depressed and intermittently paranoid was nothing to do with it, but bottom line I don’t feel like myself. Difficult to describe, I just feel weird and worse if I am put under any stress. The foggy head is slightly better, although I am having a lot of problems collecting my thoughts - conversation isn’t what is was - I try to follow a thought through and it’s tough - nothing flows. The tinnitus is apparently not uncommon - apparently can come on in people who don’t have it with top, and as I have it anyway, the increase doesn’t surprise me - but it does worry me. It’s at a level that it’s hard to sleep. The tingling in my feet I can live with - that’s not a problem.

Without the drugs I live with the condition, with the drugs I live with the side effects and so far have never been able to stick with one long enough to see if it could work. It’s making me feel so horrible, every time I put a tablet in my mouth I can’t believe I’m doing it. It’s only sheer desperation that would even have me contemplating it. Not really sure what I’m going to do. Do I stick it out - it can take 3 months for this stuff to work - I don’t even know it will work - and in the meantime I have no idea if these s/e’s will let up. Apparently some people do multi pharmacy with Top - an anti depressant plus Top to counter the mood swings top causes - but I tried an SSRI once and it made me horribly dizzy. Just don’t think that’s a solution for me.

It doesn’t help that the neuro I saw believes verapamil is for people with ataxia not vestibular migraine. I’ve read too many articles that suggest otherwise, but it’s clearly what he thinks and he’s not what you’d call the friendly or approachable type, so no getting round that one really. My GP will only prescribe what he has suggested.

Sorry, this was meant to be a short post, am clearly frayed at the edges. I’m very aware it’s full of moaning and you’ve been ill far longer than I have and you rarely moan. My guess is this drug will go the way of all the others - the bin. I might just have to try and look at controlling all stress (difficult proposition) watch my diet, up my supplement intake - I slacked off on magnesium and B2 which are meant to help and I think they did until I got lazy and forgot to take them, and hope for the best. Pretty miserable about it all right now.

Hannah

Hello Adam,

Thought it was important to write again as I am aware a number of people read these boards and in my last post I was clearly in meltdown, lol. I nearly deleted it, but then thought it might be more helpful for people to see the before and after post, as it were, namely how things are going nearly three weeks in on the topamax, which is much better.

Anyway, as is probably evident from my last post, initially topamax did cause me to feel pretty anxious and irritable. I also had a lot of fog, tingling in my extremities and my tinnitus increased. There has been a big improvement in all those things bar the tinnitus which remains at the same increased level. I have also the odd moment of what seems like decreased hearing - nothing major, but enough to worry me a little. I get this with my symptoms anyway, but was concerned as this drug is clearly affecting my Tinnitus and I wondered if it was impacting on my ears inother way. I am still on 25 mg. I took it every other day for the first week, then every day for the second week, I was meant to increase again but because I had a rough ride and the ongoing problems with the tinnitus I am sticking with 25mg at the moment.

I’m 4 weeks in to a relapse of symptoms. Until about 2 days ago things were bad. Very photosensitive, a new departure for me, all light felt too bright, very, very spacey and lightheaded all the time in a pretty intense and disabling way, mild vertigo most nights. The last 2 days I have been able to concentrate again, have experienced a marked lessening in severity. Whether this is down to the drug or would have happened anyway it’s hard to say. I’ve had relapses before which come and go, although not one that’s lasted this length of time for a while.

I talked to my GP who wasn’t sure what to advise, although she was much more supportive and helpful than I thought she’d be. She said if this drug didn’t work out she’d be prepared to fight my corner re any other drug I wanted to try including verapami. She said regarding the tinnitus that I could try cutting back to every other day again, then titrate up more slowly. At the moment I am continuing to take it every day and having a big think. It may be that I will have to come off it eventually as I am scared to titrate up in case it hikes my tinnitus through the roof.

Adam, I think it was you who once said to me that sometimes people use these drugs intermittently, only when having attacks? Is that right? I think a neurotologist once said the same thing to me. I am currently working on the principle that despite my tinnitus concerns I should try and stay on it a bit longer to see if my symptoms stabilise. My thinking is that there is a chance this is helping to get this episode of migraine under control. Even if it does that it will have helped.

Anyway, Adam, many thanks for all your thoughts over the weeks on these drugs and giving them a chance etc… It gave me the courage to stick with the drug and at least has shown me that side effects can and do subside, even if I end up not being able to stick this with this one. It would make me much more confident when trying another one. Apoligies again for the somewhat hysterical nature of my last post, as I said I was going to delete it but really do think it’s helpful for people to see how week by week on a drug you can go from totally miserable to doing ok with it.

best,

Hannah

Hi Hannah

Fantastic to hear you’re doing a bit better… I’m sure this
relapse will only get better from here.

As you probably know, Topamax is not really the kind of drug you can
take intermittently as it can cause seizures if not titrated and reduced slowly. The side effects
of using it intermittently could also be intolerable as well.

I can’t see why there would be any issues taking Verapamil during your bad periods. Maybe
that one is worth a try - it is very unlikely to cause any of the problematic side effects with mental
dulling and fog that you have experienced with other drugs as it seems to be much less psychoactive.
It’s effect might even be peripheral - who knows. I still use the Acetazolamide intermittently but
am taking a bit of a break at the moment as I have a head cold - just wanting to deal with things
one at a time :slight_smile: With Verapamil or Acetazolamide you should find they will have an almost immediate
effect if they’re going to work - they don’t tend to take a long time to work.

Your posts haven’t been at all hysterical… they’ve been easy to read as per usual.

If you haven’t seen this yet (from Scott’s post on the HealthBoards) - this is worth a watch (requires quicktime):

meei.harvard.edu/videoclips/ … ziness.mov

Adam

Hello there,

Just a quick update. Am in the process of titrating down off the topamax. Don’t ultimately feel it is doing enough or maybe any good to consider staying on a drug with so many side effects and potential long term problems -tinnitus - potential kidney stones etc… If it had proved a magic bullet obviously I’d have been happy to put up with any number of side effects but it didn’t.

Still experiencing heavy duty symptoms - about six weeks into this major relapse with little sign of let up. Am actually thinking of giving beta blockers a go again next as don’t feel I gave them a fair shot last time. I took them at a time when I was new to trying drugs and very anxious about them so feel that may have skewed my perception of the effect it was having on me. Not sure, may give it a go. I like the fact it acts on adrenalin and seeing as stress plays such a huge role in my relapses it might kill 2 birds with one stone. Got to admit losing my faith that any drug will ever kick this for me.

Adam, I was wondering, I am so desperate for the odd day of relief from this, particularly the photosensitivity which can be punishing, that I have a question about benzos for intermittent use. Valium doesn’t kick my symptoms - merely makes me drowsy and therefore dizzier. Do you know if people respond differently to different benzos? I’ve never really considered using them before but am so desperate now that if I have a really heavy work day or big meeting it would occasionally come in handy to have something I could use to calm my symptoms down. Wondering if it was worth asking my doc if I could try a different benzo. I notice you said you are using clonazepam. Any particular reason it’s that one over another one? Is this considered better for relief of vestibular migraine symptoms?

Anyway, hope you’re doing ok,

best,

Hannah

Hi Hannah

Not good to hear things are still not improving.

Clonazepam seems to be the benzo most commonly used for vertigo from what I’ve seen, although
Alprazolam (Xanax) seems to be another common one.

I am only a little worried about difficulty coming off them - I already know I have trouble coming off
Pizotifen (major headaches that last days, in clusters, anxiety, feeling depressed etc.) I’m happy to take
these long term.

You might want to do a Google search for dosage equivalences between benzos and half lives etc. I take
0.25mg of clonazepam which is roughly equivalent to 5mg of valium. It does not make me sleepy at all,
in fact I feel much more alert and clear-headed.

Adam

Hi Adam,

Been meaning to pop in and say thanks for the info. I talked to my GP who was happy to prescribe a different benzo, although I could only remember the brand name, klonopin, which she wasn’t familiar with, so have to phone her with the details. Good idea re researching the dosages, will need to look in to that.

I don’t want to speak too soon but I seem to be doing a bit better. Of course the terrible irony is that the upswing in health seems directly related to coming off the topamax and it leaving my system. I am by no means dizzy free, but the vertigo at night has tailed off significantly and the lightheadedness has been much more manageable the last 3 days. I took the last top tablet on Saturday. Seems it really wasn’t the drug for me. It’s also great to be much clearer headed. I only realised on coming off it how much it was clouding my thought. If it had worked I might have lived with that, but unfortunately it seemed to make me worse. The only troubling thing is my tinnitus is much louder in my right ear, happened on the top and has remained that way. This is a real shame which I can’t dwell on as I think I might be stuck with the new level. Unpleasant but I’ll get used to it. You have to try these things - for all I knew topamax could have proved the magic bullet.

I think the most troubling symptom at the moment is the damn photosensitivity. If it wasn’t for that, with the complete failure of any migraine meds, I’d be thinking maybe migraine was a factor (namely I get migraine) but not causal in the dizziness. The photosensitivity tells me otherwise. I am spending a lot of time wearing shades and it’s winter. It’s even difficult inside, any light really. It’s horrible as it seems to increase the dizziness and blow my concentration - in the way that a person would feel disorientated staring at a lamp too closely. It comes and goes, although can hang around for hours.

I am thinking of trying a beta blocker next - the doc has given me a prescription. I’m just waiting a few more days after the top, make sure it’s well and truly out of my system. I also want to see how I’m doing in a few days time. I am back at acupuncture. I’m not huge on ‘alternative’ therapies and have read conflicting reports about the effectiveness of acupuncture, but it seems to have done me some good in the past, so I’m giving it another go. Even if it’s a placebo effect I’ll take it.

Hope you are doing ok, Adam. Didn’t realise you get drop attacks - that can’t be easy to deal with. I’m grateful I haven’t had that.

best,

Hannah