Hello All
I am new to this site and I am looking for a bit of advise. I am 31 and I have been dizzy (on and off) for about 7 years - I was first diagnosed with uncompensated vestibular neuritis. The dizziness peaked again about 2 years ago and I got a second opinion from a neurologist who suggested silent migraines. This was confirmed by Dr S in December 2016.
In terms of medication - I have been taking 10mg propranolol (for panic attacks), 50 mg of Lyrica (I’m unable to increase this due to weight gain) and now 25 mg of Topiramate which I am hoping to increase.
I have only been on the Topirmate for 3 days (taking one tablet before bed) but the side effects have been pretty intense and I was wondering if it was worth persevering? Does it get worse before it get’s better? The side effects I have been experiencing include increased dizziness (annoyingly!), headache, anxiety, feeling out sorts/ detached (could be down to increased dizziness).
I know some people have had big successes on this drug so I am willing to try and sit it out - but any advice would be much appreciated - does this sound like a normal adjustment period to the drug?
Thanks!
Janette
I had the exact same experience and started taking it at night as well, since it kept me up because I was so panicky my doc told me to take it in the morning. Bad idea- I have to drive for work and am in college so feeling doped up and honestly not remembering what happened the day before wasn’t a “fix” for me.
For me I had to stop it. I am on Elavil (Amitriptyline) and have found some relief- hopefully total, so I mean you might break out of the funk, you might not. I really hope you can find some relief because this MAV train is horrid, it truly is, we’ve all gone through so much accommodation for it. Best of luck, if you do push through you are a trooper!!
I am one of topiramates success stories but I only take it with 10mg of nortriptyline. I split the 25mg tablet of topiramate in two and take half in the morning and half in the evening with the nortriptyline. That combination works brilliantly. I am not sure why you are on three meds and maybe that is the problem rather than topiramate per see? I do know some people struggle with it but my neurologist told me I had chronic, debilitating VM and so it wasn’t as if the meds only had to tackle a small thing, I had been struggling for over a decade. Could you discuss the meds with whoever prescribed them and ask why you need all three and what each one is supposed to do for you? Then at least you will have some idea of the aim of the treatment you have been given. I was told that my brain was misfiring and so the topiramate would calm the chaotic electrical activity which it did almost immediately. It really helped me to understand what was going on and what the meds would do to help.
Thanks so much for taking the time to reply and sorry to hear you have been suffering too - MAV is so frustrating and dibilitating. The impact is so hard to put into words.
I was put on propranolol in December 2016 and it made a huge difference to my anxiety (I haven’t had a full blown panic attack since I started so I am reluctant to come off). I fully believe the panic attacks stem from feeling dizzy so much of the time.
I started Lyrica in February this year and it did help but I’ve been struggling to get up to the required dose due to lathargy and weight gain. (I feel so awful after exercise that it isn’t really an option). So Dr Surenthian suggested I introduce topiramate but so far it’s making me feel ten times worse. I’ve done some reading and some people suggest that it might take the body about 5-6 days to adjust, does that sound right? I’m willing to try and hold on until then. But if I don’t see any improvement (or at least go back to my more manageable dizzy state) I’m going to have to try something else.
This December marks 7 years of dizziness for me - hopefully this is the (bumpy) road to recovery.
Thansk again
@Janette Hi there. I have a love/hate relationship with Topiramate. If I may offer one bit of advice it would be don’t titrate up too quickly.
The first time I started it I took 25mg at night for a week and then 50mg (25mg night and 25mg morning). And I had lots of really horrible side effects and after about 5 weeks I had to stop.
I have tentatively tried to reintroduce it again a few times and had problems even with really low doses, so I have tried lots of other meds in between. However having read what Margaret (Revolving) said about the massive difference 25mg (split into two doses) has made to her life and also because my neurologist wasn’t giving me hardly any medication options I decided to try it again REALLY slowly.
I am still only on 12.5mg a day (a quarter of a tablet at night and a quarter in the morning). However I have managed to continue with less side effects (not none, I still get some earache) but less. My agreed goal with the neurologist is only to get to 25mg as I am clearly sensitive to Topiramate, but I do think it helps.
I take 20mg of Citalopram alongside this as well as 5mg of Diazepam at night.
I agree with you that Propranolol is great for anxiety, and I do have a rather large emergency supply that I have stockpiled (to use, just in case). But I don’t like taking it regularly because it seems to slow me down and make me lethargic, plus it give me long and boring dreams (but then so does Diazepam).
Why not give the Topiramate a bit longer, I don’t know how it interacts with Lyrica but wonder if you really need both? As I think has been said.
Weight gain seems to be a real problem with Lyrica, my GP threatened me with it (lol) but I prefer to exhaust all the ones that either cause weight loss or are weight neutral first!!
I wish you all the best and I hope you feel better soon.
Thanks Sarah - taking it slowly is really good advice.
In my review letter from Dr S he indicates that I should be uping the dose (in stages) to eventually get to around 100mg per day. Is your understanding that this drug might be just as effective at a lower dose for some people? In other words I might never need to get beyond 25mg if my body can tolerate it and it actually starts to improve my MAV at that level?
Hi Janette. Yes. Margaret is a good example, (correct me if any part of this is wrong @Revolving). But I believe her goal was 50mg a day, however she found 25mg so effective that she decided not to go any higher.
A while back I read online about a study which indicated the therapeutic effects of Topiramate for MAV sufferers were no better in those who took 100mgs a day than in those who took 50mgs. In fact the only difference was that 3 of those on the higher dosage had to pull out because of the side effects.
100mgs is quite a high dose. That is another good reason to titrate really slowly, that way you can give the side effects a chance to settle and see what level of relief you are left with once they do (if they do).
Some people might look at my dose and say it isn’t even a therapeutic dose for a hamster lol, but I know how I feel and what I can tolerate better than someone who I can just tell about it so I am happy to be allowed to make the decision for myself.
Best of luck with it.
Sorry about the delay. Sarah is correct, I was supposed to go to 50mg but stopped as soon as I felt better at 25mg. I wonder if Dr S meant you should reduce the lyrica as you begin the topiramate? That would make more sense to me. Just keep an eye out for how you feel at each stage. If you see an improvement on 5mg stick with it, it doesn’t matter afterall it is only drug companies that benefit from patients taking ever more drugs! Can you reduce the lyrica do you think and then stick at he lowest dose of topiramate whilst your body adjusts. Once, and if all is well, and if you need to you can up the topiramate a tiny bit more. Just a suggestion.
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Thanks all - I had a horrible nose bleed in the night which might not be related at all(!) and a pretty scary vertigo attack today (I had to get a taxi home from central London as I could hardly walk straight) so I defiantly need to reduce or come off this drug.
I really appreciate your response - there is so much to learn about this condition and it makes me realise how many more questions I need to be asking in the short consultations I have with Dr S. In his notes he advised that I stay on Lyrica (50mg) while trying to introduce topiramate. If I am intolerant, his next suggestion was for me to try nortriptyline (I’m not sure If im meant to remain on the Lyrcia with the nori or not though). Another question I should have asked at the time…
Thanks again!
I have just looked up lyrica and it is another anticonvulsant just like topiramate which makes me doubly surprised that you should be taking both together. As you are reacting badly, may I suggest you phone Dr S and explain the situation and check that you really should be taking both. It will probably mean leaving a message with his secretary but I think it is important to get this sorted. Or you could check with a pharmacist and/or your GP. I think it would be wise to seek advice sooner rather than later as I cannot imagine two anticonvulsants will really be necessary. Sorry if I am being a busybody.
Thanks for checking for me - and sorry for the slow reply. Yesterday was a rough day. I called my GP after my vertigo attack and she advised me to stop taking topiramate (she was aware that I was on it with Lyrica as all prescriptions from Dr S have to go via my GP). I think the reasoning was that because I couldn’t get to the dose required with Lyrcia (due to weight gain) this new drug might be a way to increase the dose (and stabalise my weight - counterbalancing the Lyrica in that respect) but both fighting the MAV. Anyway the approach sadly didn’t work for me and I feel pretty terrible at the moment. Hopefully this passes. I’m going to try and get hold of Dr S’s secretary today too. Thanks again for all your help - and I was so determined to try and sit it out at least reduce the dose!
I am pleased you were able to speak to someone, I was concerned for you. Topiramate helps you lose weight as it decreases, rather than increases the appetite I believe if the dose is large enough so I don’t know why you can’t try that on its own as apposed to having either both or lyrica? Maybe Dr S can explain that one. At 25mg it has had no effect on my appetite but I expect on a higher dose it might. See it is not all bad!!!
It did on mine. My appetite was affected even at 25mg, in fact I think it is affected now at 12.5mg. I guess being sensitive is not all bad lol.
Let’s hope the next trial is more successful. Are you feeling any better?