Dizziness back in full swing!

Well, I am EXTREMELY disappointed to say the least! And what is even MORE disappointing, is that I now can’t even effectively pinpoint exactly what caused it, because of course, as MAV’rs, we always seem to get ourselves into situations that leave us multiple culprits for our dizziness.

I came here a few weeks ago, just before getting on naproxen for a stupid inflammatory condition which is fine now, wondering if taking it twice a day for 3 weeks and then stopping it would cause me rebound. I had no idea, and the reactions were mixed, but I think being on topamax, the idea that the rebound could be bad, was kind of low. Well, I did my 3 weeks, got off the naproxen, and like magic, the dizziness went into full swing, worsening a bit every day. I am now on day 5 and I have my sunglasses back on, having difficulty navigating stores and busy places, and I get dizzIER when I make quick head motions. Otherwise, I just have a low grade dizziness all the time. THANK GOD, I dont have any of the “head symptoms” I had 2 years ago, and I wont even get into that, but this is enough. I DO have a bit of pain just above the left eye socket which I am thinking is activated migraine, so that might be a good sign that I am triggered from SOMETHING, but the question is what. See more below.

Now, for the tricky part. on the EXACT same day that I stopped the naproxen (OF COURSE!!!), I was working with a paint can, slipped, and sliced open my hand really good. The paint can and screw driver I was working with was extremely rusty, and there was no getting around the fact I was going to have to get a tetanus shot. I have had them in the past, so I thought I’d be ok with it, BUT, I DID search the net, double check with the doctor, and tell him my concerns about my condition. i was assured that there was very little chance that the shot would have any effect on my condition, and that any symptoms I experience would certainly be temporary. So, I got the shot. The next morning, which was also the first day off the naproxen, like magic, the dizziness was already low grade. The second day a little worse, the 3rd day a little worse, and now Im on day 5. By day 4, the diarhea kicked in for some reason. This is the strangest damn thing ever. I have had set-backs before, and have had times where my dizziness has come back for 5-7 days and then I’d be fine for many many months again, but I am very skeptical about what i am experiencing right now, because in the past, I was almost ALWAYS triggered by stress, and I could feel it coming on. This time, it was like it came out of the blue, like it was FORCED upon me. Now I dont know what to blame,…rebound caused by the naproxen, which i was taking twice a day at 375mg or this stupid shot. And of course, no professional can give me any answers. Now I’m just sitting here with my sunglasses on waiting it out. From a stress standpoing, I KNOW I have to ignore this to the best of my ability and just move on, and if this is just a temporary situation caused by the naproxen, it SHOULD go away within a couple of weeks to a month, approximately the same time I took it for. But if it’s caused by the shot, I dont know what to expect. That’s the story. I dont know what to make of it

Rich

Interestingly enough, after going back through “Heal Your Headache” by Dr. Bucholtz, it says that naproxen does not cause rebound, as well as non-cafeine containing pain-relivers like tylenol. Anyone disagree with that? I could have sworn I read somewhere that this was a controvercial statement. Because if this is correct, and the naproxen does not cause rebound, my recent set back here is caused by the tetanus booster, as there are no other changes in my life. It annoys me because I quizzed the doctor up and down about the booster because i took it, and i was assured until the cows come home that it couldn’t do anything that wasn’t “temporary”. Here I am, 5 days later, continuing to worsen every day. I am still trying to maintain my sense of calm, and not let anxiety take over, as anxiety will push this into a whole new category. I need to be impartial, and let it take it’s course, but opinions would be greatly appreciated.

Rich

Im doing more research on-line and Im finding naproxen listed. I am also finding that taking drugs like this for more than 10 days in a row spells trouble. i took it for 21 days, twice a day, and then just stopped it cold turkey, which is reported to be another problem. The “method” for easing out of this situation is “weaning”, which the doctor didn’t think to do with me because he was treating an inflamatory condition, not my migraine condition. This has been a lesson learned! I thinking now that this is definitely naproxen withrawl. Any opinions? Anyway, Im done researching, I think this is it. I looked up the vaccine in association with these symptoms and can’t find anything on tetanus causing this. Im now thinking if I just take it easy, and ride this out, it should go away in about a month. I haven’t had a month of dizziness in years lol.

Rich

Rich ,
what a shit…so sorry…
your right , try and imagine it WILL go away in time.
“As you said” the worst thing to do is pannic, that can set us Mavers off.
It’s probably the naproxen, the asprin I was on ( for my ablation) took about to weeks to stop the rebound.
things got back to my NORMAL.

Good luck and stay calm. :frowning:

jen

Thanks Jenny, this is what I am thinking too. It just sucks because I am used to a very very particular “normal”, which is not “perfect”, but it is near perfect. Still, I am not complaining because I am nowhere NEAR where I was when I was suffering tremendously a few years ago, and I am thankful for that, but the worry in me also doesn’t want to head back there. Still, I know that worrying about it will do nothing but make that happen. So, I’m heading back out to do some more work on my haunt for this season now and will ignore this until it goes away. Thanks again

If anyone else has an opinion, I’d appreciate it. Thanks

Rich

Hi Rich,

So very sorry to hear you’ve had a resurgence. I spend long periods of time at my normal on a beta blocker - which means I can live a regular ish life if I avoid triggers. I have, however, since I’ve been better, had big relapses. They can last for a week, two weeks and sometimes many weeks, although generally improving as things go on.

I always, always want to panic my backside off. It’s so horrible to be plunged back there, however, as you say, anxiety will simply encourage the symptoms. The fact is you have identified a trigger - looks like you know what’s done this. Presumably this has simply meant the drugs, although raising your threshold, didn’t raise it enough to combat this. As they always say, migraine can’t be cured, only controlled.

Having been at your normal with this, you will get back there. Sometimes I up the dose of my drugs a little to help things on their way. I did that a couple of weeks ago after a big relapse post flying and it has speeded things up. As you say, don’t panic, this too shall pass. Keep busy if you can, take your mind off it and it will go.

I wouldn’t get despondent/panicked if it takes longer than you expect. My relapses vary in length but do pass. You’ve simply activated the migraine and with the help of the drugs it should calm down again.

H

Sorry Rich…This will pass. It is hard to pinpoint anything just as it is hard to pin point any causes. eventually on medication your body will adjust…

Hi Rich,
Sorry to hear about your rebound of sorts, but here’s my opinion for what its worth (and it’s only based on what I have seen others go through, read a bit on, and know regarding this lovely condition called MAV):

I suspect that in some form, you are reacting to stopping the naproxen cold turkey. I think that we (MAVers) are more sensitive compared to normal folk and therefore, probably can’t get away with just stopping something, even if it is a med that is not supposed give us any rebound affects. Considering the dosage and length of time you were on it, I figure your body is having SOME reaction. Secondly, the shot - that’s a tough one. As you said yourself, we just don’t know how certain things can affect us. Did the shot “freak” your body out a bit? Maybe. Probably a little. Factor in the shock of cutting yourself (yes, the body itself will react to ANY injury) and that may have hightened it. Finally, and I mean this in with good intentions, I think we all have a habit of falling into the psychosomatic rollercoaster, meaning that as soon as we start feeling strangely, we start to manifest things or at least possibly make them worse. I am NOT saying that you aren’t feeling dizzy or poorly. I AM saying that MAV as you know, triggers the anxiety, which then makes things worse, which then can trigger other things. Do you know what I mean? So the combination of all these things has you in a bit of a tailspin at the moment. As always, time is the answer here. I am confident that you will go back to feeling as you did a month or so ago. Will you know what triggered all this? Who knows? Maybe there wasn’t a specific trigger. MAV can just flare up in weird ways out of the blue too. But as you well know, it also just goes away/fixes itself (body adjusts) just as fast.

So don’t fret, my friend. You’ll be ok. Just hang in there and try not to worry.
Best, Bonnie

PS. You noted working with a paint can. Were you around any paint fumes? That in itself would put me in MAV hell!

Hey Rich,

Good to see you back again but not for this reason! I’m with the others and think it’s the 3-week treatment of Naproxen that has stirred you up. Hang in there mate. There’s no reason you shouldn’t hit baseline again as you have previously.

I’m currently feeling as freaked as you and trying to take my own advice and NOT lose my mind. I had a two physio appts last week which were great and left me feeling fantastic. As soon as my neck started to jam up again I took matters into my own hands and massaged my neck the same way she did but longer and too much. Two mornings ago after pushing on and loosening up C2, it started. Dizziness for the first time since Christmas. And it’s escalationg like you said yours has. I staggered to the bus stop this morning like a drunk. Using the computer right now is near impossible and driving is out of the question. Last night I woke 5 times with my heart in my throat from the dizziness. No idea how long this will go on for but trying to stay Zen.

Let me know how you get on.

Scott

Hey Rich,

Sorry your having a bit of a setback. I sure hope it’s temporary cause you were doing so darn good! If you need to call me for some support feel free.

Joe

Thank you ALL very much for your follow-ups:

Thanks Hannah, I appreciate your comments. I went to my migraine specialist today for the first time in well over a year and a half, and he agrees with me 100% that the naproxen caused this, so I’m hanging in, trying to let this pass. Thanks again for the support!

Hey Howie, good to hear from you! Im kind of up and down here. I think Im improving, and then the next day I’m thrown for a loop. But I think overall I am heading in the direction of stablizing. Dr. Choe told me it could take me the same amount of time I was on the Naproxen, or a little longer, so he said to be ready to spend the last part of June and the first 2 weeks of July in this state. Overall, about 3 weeks of rebound. So I said ok, and said I would do my best to just ignore it and go about my business. So far Im doing ok. Thanks again. I hope to report back in a month that I have stablized. I just dont want to think that I rendered the topamax useless by taking this med. The naproxen actually improved me EVEN MORE by about the 2nd week, and I was feeling right around the 100% mark, so I knew I was going to be in for some problems when stopping it. And here we are lol

Bcrelief, you definitely hit the nail on the head there. I can’t argue with anything you said. I definitely worried myself about even GETTING the shot, and that could have set off some anxiety that caused some issues, but I really do think the naproxen is the main culrpit here, and I think you hit the nail on the head when you said it’s the result of stopping it cold turkey. I didnt even think to wean. All my set backs in previous times has always been stress related, and every day has always proven to bring more and more stablization until I returned to normal. So I knew what to expect. This is different because I am waking up every day with the exact same symptoms. It’s a bit scary but I understand it so Im just going to try and deal. I guess I was just second guessing it and wanted to see if anyone thought something different could be at play here. But I think the naproxen is definitely to blame. Thanks again for your insight!

Hey Scott. Yeah, looks like the naproxen did this one. Unreal huh? Dr. Choe says to wait it out for 3 weeks or so and baseline should resume. We’ll see what happens. I’m sorry to hear about your own setback, and I am certain that this massaging incident will work its way through and have you back at your usual self shortly. Sounds like you had some control there for a while from what you are stating here. Im really glad to hear that, as I know for a while, there was not much improvement.

Thanks Joe! PM me ur number again. I changed my phone number and lost my addresss book.

Thanks again feveryone for the support. I hope to report back within the next few weeks with stablization progress. But I am getting along ok though, and this is hardly a huge crash. ITs more of an annoyance, but it’s enough that it warrants some attention because I dont want to spiral out of control. Better to nip it now while it’s manageable. Thanks again!

Rich

Hey Rich, long time no hear which means good health and management for you. Just thought I’d throw it out there, that when I was doing pretty poorly (and that started over 4 years ago now and I’m much improved), I had my annual flu vaccination and it made me incredibly sick and set me back quite a bit. Very scary cause I thought it may never pass but good news was that I did improve and life has been pretty managable most of the time now. Still too scared to have any more vaccinations though, would like to as my immunity to colds is not crash hot but too damn scared!! You’ll settle I’m sure, and the best of luck. Regards Judy

Thanks Judy, I appreciate your comments. I do wonder in the back of my mind about the tetanus shot, but I cant do anything about that now lol. I’m having a bit of “visual sensitivity” today, which was my most ANNOYING symptom and most disabling. It’s manageable, but the fact that I am experiencing it at all is causing me a bit of sadness. Still, I am not letting it get me down and I am treating this like any of my other usual “trigger overloads” I have experienced over the past 2 years. But since it was caused by medication or a vaccine, it could take a little longer to stablize. I just hate being in this state again. It’s nowhere near the level of my “crashed” days, which is good news, but it’s also not a constant set of symptoms that are always the same. So far, over the past 6 days, the “dizziness” aspect seems to be improving a bit, and is being replaced with visual phenomenon. Not sure what that means, if anything. I guess the best policy is not to analyze it, just ignore it, and live my life until this ceases. Ugh lol!

Rich

— Begin quote from "jennyd"

Rich ,
what a shit…so sorry…
your right , try and imagine it WILL go away in time.
“As you said” the worst thing to do is pannic, that can set us Mavers off.
It’s probably the naproxen, the asprin I was on ( for my ablation) took about to weeks to stop the rebound.
things got back to my NORMAL.

Good luck and stay calm. :frowning:

jen

— End quote

Hey Jen, how long did you take the aspirin for and was it every day? Just curious. I took my naproxen at 375mg (twice a day mind you lol) for 3 weeks. Just curious to compare :slight_smile:

Rich

UPDATE:

Well, it’s been 3 weeks since I got off the naproxen (which I was taking twice a day for this other DUMB condition which is now gone). I only took the naproxen to begin with for 3 weeks. This rebound is showing no signs of going away. I am in no way as bad as I was when I crashed 2 years ago, probably because the topamax is holding me to a certain extent, but I just can’t bounce back. Does anyone think 3 weeks is not enough time, or should this have worked its way through by now? My main symptom is just the exaggerated appearance that everything is moving around me more than it should. I dont “feel” it as dizziness unless I am moving my head around a lot. And then when I do, I mostly feel it in my eyes. I dont feel it in my head at all. It’s entirely visual. That’s how it has been for me through most of my MAV experience. I dont want to think I have to “up” my medication to try and compensate for this increased dizziness, but if this is the case, LET THIS BE A LESSON LEARNED, TAKING NSAIDS CAN DECREASE THE EFFECTIVENESS OF YOUR MIGRAINE MEDS IF THEY ARE WORKING,…PERMENANTLY!!! At least that is what it seems so far. I cannot seem to get out of this no matter how much I “ignore” it, and just “move on”. Every day I wake up the same. Ridiculous. I can see it now, I am probably going to have to increase my medication and then wonder what kind of effect that is going to have on me on top of what I am already going through. I am EXTREMELY annoyed because I was stable, perfectly stable for over 2 years. And now instead of being at 95%, I am at about 70%. That 25% is making a BIG difference in my quality of life. how, after all this time, could doctors not know that NSAIDs will cause your medication to stop working???

Rich

— Begin quote from "Rich2008"

UPDATE:

Well, it’s been 3 weeks since I got off the naproxen (which I was taking twice a day for this other DUMB condition which is now gone). I only took the naproxen to begin with for 3 weeks. This rebound is showing no signs of going away. I am in no way as bad as I was when I crashed 2 years ago, probably because the topamax is holding me to a certain extent, but I just can’t bounce back. Does anyone think 3 weeks is not enough time, or should this have worked its way through by now? My main symptom is just the exaggerated appearance that everything is moving around me more than it should. I dont “feel” it as dizziness unless I am moving my head around a lot. And then when I do, I mostly feel it in my eyes. I dont feel it in my head at all. It’s entirely visual. That’s how it has been for me through most of my MAV experience. I dont want to think I have to “up” my medication to try and compensate for this increased dizziness, but if this is the case, LET THIS BE A LESSON LEARNED, TAKING NSAIDS CAN DECREASE THE EFFECTIVENESS OF YOUR MIGRAINE MEDS IF THEY ARE WORKING,…PERMENANTLY!!! At least that is what it seems so far. I cannot seem to get out of this no matter how much I “ignore” it, and just “move on”. Every day I wake up the same. Ridiculous. I can see it now, I am probably going to have to increase my medication and then wonder what kind of effect that is going to have on me on top of what I am already going through. I am EXTREMELY annoyed because I was stable, perfectly stable for over 2 years. And now instead of being at 95%, I am at about 70%. That 25% is making a BIG difference in my quality of life. how, after all this time, could doctors not know that NSAIDs will cause your medication to stop working???

Rich

— End quote

It’s been three weeks man… I’d wait a few months at least before I started upping the topa. Also to me you seem to be in a quite good place still so you shouldn’t have that big a problem waiting a few months. I can understand if someone’s having really high symptoms that htey really really want to find relief, but to me it sounds like you’re still doing pretty good mate, so just take it easy and wait a few months is my suggestion.

I’m worse after a tbe-shot myself; it’s been three weeks for me too so we’re in a similar spot you and I. For me symptoms are unfortunately fairly bad at the moment, but I’m still hoping they’ll go down again :frowning:

Rich,

I’d chill with this for more time. I had a relapse of dizziness back in November that lasted about 6 weeks and then, just like that, vanished again. I was dizzy free for months until I had too much massage on my neck recently. I’m back in dizzy land again but not sweating it as I am 99% sure it’ll burn out again if I just leave things alone. I’d wait about 2-3 months if you can before making changes to Topamax. Hannah too has had weird blips that come through, sit around for about 8-12 weeks and then go again.

Scott

Hi Rich - My main trigger is hormonal, and my dizziness started during perimenopause a year and a half ago. I was able to handle 100 mg Topamax, which brought things pretty much under control for me (only rare mild symptoms, which was great improvement from some very scary episodes that at worst included severe, unable-to-walk-without-falling dizziness and tunnel vision).

But dropping estrogen levels caused major discomfort in the lady department, so I started using a tiny medication (tablet) administered locally every few days that is supposed to result in very little being absorbed into the bloodstream. But enough got into mine to affect my migraine brain! And soon after starting on it, my dizzy spells started again, though fortunately no tunnel vision episodes. I waited 7 weeks before I went back to my neurologist - I thought he might suggest something like 125 or 150, but he suggested 200, and he said that since I tolerated 100 so well he didn’t anticipate I’d have a problem with 200 mg, and he was right.

I’d like to be on less Topamax, but I can’t get off this other hormone thing without ending up with what feels like paper cuts in that region (sorry if that’s too much GYN info for this forum) - I have tried to wean off of the hormone tablet; there are “natural” ways to help this lady problem, but so far what I’ve tried hasn’t worked for me.

Anyway, I wanted to let you know that I did get bumped up in my dose and did get stabilized again.

BUT - I am still contemplating an attempt to go back down to a lower dose, even if I don’t get weaned off this hormone. At least I would like to ask about it next time I see the doc. One reason is that I know I’ll no longer have the wide hormonal fluctuations that I had when I first started having the dizzy spells: I’ve gone through menopause now, so I won’t be able to have the high levels of estrogen I was still having back when this started (the little tablet only adds a fraction of what one has during a normal cycle - and that perimenopause rollercoaster often causes “spikes” that are even higher than normal levels). But even without that reason, my thinking is our brains can change, and the migraine threshold might possibly change too - couldn’t we consider a trial on a lower dose after a sustained stable period just in case we might not need so much Topamax?

Something for you to consider: even if you do go ahead and increase your dose now - you may not want to think that it’s “forever.”

Thanks MikaelHS and Scott. I think both you guys are right. I am definitely going to let this one ride for a while, at least through my haunt season (through the end of November). If things aren’t right by then, I’ll re-evaluate but as it was mentioned, I am FAR better off than I was in the past. It’s just enough to drive me a bit crazy here lol although I must say, today, which is EXACTLY 3 weeks to the DAY that I stopped the naproxen, I am having a near “normal” day for what I usually experience. We’ll see what happens as far as continuing ups and downs but this is the best it’s gotten since that time so maybe it’s starting to move through. I dont know. But I was thinking that maybe because i was taking the naproxen TWICE a day, the rebound might last longer than 3 weeks? Also, when researching into rebound, I found out that most people would take their NSAID on a migraine day, and not on a pain-free day. Then, the amount of days this added up to would add or take away from total “rebound”. More than 10-15 days per month was the killer. But for me, I took this twice a day EVERY DAY for 21 days straight so I am thinking that maybe this has a more increased effect because I did it all at once? I couldn’t find anything in the literature on that.

Thanks for the info Maryalice. One of the things I liked so much about where I am, is that it only took 50mg to get me controlled and I am not fond of taking more medication. Nobody really knows the long term effects of topamax (although there is no reason to assume there are any major problems with it) and I would just like to be able to take less if at all possible. I would imagine, in your case, that after you have stablized for a while, you might be able to lower back down to your 100mg? Anyway, I think I will take the advice of sticking this one out and seeing if this doesn’t resolve on its own, as playing around with the topamax will have its own set of problems. Man what a predictiment. i honestly had no idea it would cause this kind of de-stablization. Yes, it’s not horrible horrible, its just not what I am used to. I’m spoiled I guess, and Im used to being able to visually navigate these days with ZERO problems, and now I have about a 25% deficite which is eliminated when I wear sunglasses. Annoying but manageable. At my worst, I was basically incapable of tracking more than one object at a time due to visual sensivity. I have come a long way. and I feel HORRIBLE for those who have not found that magic mix yet although I do believe there is a med and/or combo for everyone. Thanks again!

Rich

I agree that it’s best to stick it out if you can. I was having trouble at work - the head motion intolerance made the paperwork aspects of my job too difficult (looking up something, moving to jot it down, filing, etc). Not that I do paperwork all day, but enough of my day that it was really a problem. If it wasn’t disabling, I would have waited to see if things might have simmered down on their own in a few more weeks.

I hate to be on any medication indefinitely, but I too wish for everyone here that they can find something like we have that actually tames the beast. People who haven’t experienced this beast have little appreciation for the kind of crap we go through - it’s not like a bent or missing limb that folks can see.

Sure hope that with time your symptoms ease up and you get back to where they’re really well-controlled.