This morning was woken at 5am by singing in my left ear!! It was my sister singing Happy Birthday, loud & clear, perfect pitch - not my birthday & my sister lives overseas!! So what the … is going on?? Yesterday I had a ‘depersonalisation’ experience while driving - got my husband to take over as I didn’t feel it was safe feeling so detached from reality! Lasted well over an hour. Then today this other weird experience.
OK - so the ‘depersonalisation/derealisation’ seems to be a known side-effect of migraine but the auditory hallucination? I remember Miss Moss had some similar ‘voices in the head’ experiences & found it could be related to Topamax. I found her post but couldn’t open the link she posted. Other than that can’t really find any info about a possible cause. Other than these two rather ‘scary’ incidents the Topamax clear up a lot of the balance/visual vertigo issues.
Barb
It thinks Missmoss had exactly the same thing
Hi Barb
So sorry you have experienced this on Topamax.
It sounds a bloody nightmare! Such an un-nerving experience, especially when these drugs are supposed to be making us better.
My experience is slightly different to yours (exterior sounds getting louder, sounding threatening, my own thoughts shouting at me huffingtonpost.com/michael-r … 88306.html
I have also read about an exact same case of a Happy Birthday tune being heard: bbc.co.uk/news/uk-england-me … e-20732332
However, I learned from my googling that auditory hallucinations can happen on Topamax, or at least, Topamax can make them happen more often. (I used to get them anyway before Topamax, they just become mroe regular on the higher dose I was on).
So in essence, auditory hallucinations can be a symptom of migraine on its own anyway: migraine-aura.org/content/e2 … 85/e26596/ but maybe Topamax makes them more likely to happen.
Mine went from 2 a year, to 1 every other day and it was frigtening. Even if Topamax might have been my 100% knock out dizzy drug, I could not stand having these experiences every other day so I cut back to 50%. I’m now getting the episodes less.
Regarding the depersonalisation etc, the auditory hallucinations feel like that at the same time. It is really bloody scary. But mine always pass within 20mins- the same time as an aura. Important I think, to relax as much as possible and know that ‘this too shall pass’. You said yours lasted an hour- maybe anxiety prolonged it?
Maybe try cutting back on the Topamax and see if the episodes reduce? I guess atthe end of the day you have to evaluate whether the side effect outweighs the benefit.
xx
I had one auditory hallucination on Topamax. I woke up in the middle of the night because I heard lots of pots and pans banging. I woke my husband up (surprised, naturally, that he hadn’t woken up, but it was just me!). I have also had the “out of body” experiences. On the plus side, Topamax pretty much completely knocked out my dizziness.
Mary Lee
Thanks everyone for your replies! Couldn’t get to sleep last night - waiting for the next concert to start up!!
missmoss
Terrific links - great relief to know others have experienced the weird symptoms but do feel sorry for the poor lady who can’t turn her music ‘off’. She seems to be taking a very positive view of her condition - possibly better than being dizzy all the time!
Interesting that it was your own thoughts ‘shouting at you’ - I had thought it was other voices. Even so, that wouldn’t really make it any better to cope with. I hope they go away totally. How have you been coping since reducing the Topamax to 50mg & has adding the Clonidine helped reduce your stress levels? Have you got your work/life balance back on an even keel? Seems like you were on really rough seas for a while.
The Oliver Sacks book about hallucinations sounds interesting - haven’t read that one will see if I can get a copy.
I’m only just starting my second week on 100mg Topamax and although it has really helped balance issues at the moment I have a very ‘swimmy’ head & strange ‘detachment’ feelings but now feel reassured that these are either migraine or Topamax symptoms! So I’ll keep going for a while & ‘fingers crossed’ the music won’t recur - the link did say reducing the Topamax stopped the hallucinations unlike the poor lady for whom, apparently there isn’t a cure.
Barb
Hi there,
Well, if you are having the majority of your hallucinations in the middle of the night while sleeping…it can be related to the chemicals your brain makes while in REM sleep. I’m an avid lucid dreamer, and I experience hallucinations while I’m attempting to have a wake induced lucid dream. This is a common phenomenon especially when someone is in the hypnogogic state. Maybe Topomax is having an effect on your R.E.M sleep. In addition, the brain makes a chemical called DMT during REM sleep…which is known as the most powerful psychedelic known to man. It’s actually the active ingredient in ayahuasca. Anyway, I hope this helps.
After an ear surgery, my elderly aunt heard two tunes in her head constantly (I guess maybe they alternated?). One was Yankee Doodle, another was some Christmas carol.
After a matter of weeks or maybe a couple of months, the music finally stopped. I can’t imagine how annoying that must be.
Still having a bit of anxiety about the nocturnal ‘singing’! Hasn’t recurred but finding it difficult to ‘nod off’ - similar to when you’d wake during the night turn over & have a vertigo attack - the possibility is always on your mind!
I emailed Dr Granot, my neurologist, to ask whether he knew of these particular side-effects (the depersonalisation & auditory hallucinations) of either Topamax or Migraine but his reply was non-committal saying:
“These are unusual but if settled will have to be put down to an odd rection. Hopefully all symptoms continue to settle. Keep notes on strange episodes but it sounds like the overall direction is still positive and you have just hit the right dose.
Regards,”
So Dr Granot doesn’t seem too concerned and I guess as missmioss says, it’s entirely up to us to judge when the side-effect of a med outweighs the benefit. Then the decision is pretty much made for us & we have to move on. (Again!)
Barb
I’m feeling better now I know I’m not crazy I definitely been hearing shit! I just heard a fly buzz right by my ear, a Clear voice Out of nowhere right in your head! Out of body experiences!
Hi Jessica and welcome. Good that you felt brave enough to join in. The more the merrier though it’s a strange world to be welcoming others to join when you really think about it. I was amazed when I tried the site’s Search facility to find so many posts relating to ‘auditory hallucinations’. Must come as a bit of a surprise. But obviously not that uncommon. It can happen with other drugs, Amitriptyline for one. Was a lady posting on here last year who had that experience with Amitriptyline.
It’s scary when you need to be put on these meds to manage migraines and it causes all these side effects, you wonder what extent of damage is it doing to all the other areas unknown.
That may have been me Helen. When I was on Ami; I was woken to a large, loud, deep-throated dog bark in my ear, as if he were in bed with me! Scared the peedittle out of me! We don’t even own a dog nor have I been around a dog in years.
It certainly makes you wonder but if you read through the other threads I think you will find at least one neurologist Who advised continuing the treatment so obviously wasn’t too concerned. There are certain side effects which can occur from Topamax which neurologists state means the patient must stop the drug as soon as is safely possible. I am not a doctor but I do not believe auditory hallucinations come into that category. Always a good idea to check any concerns out with your medical provider though. From all I have read almost all drug induced side effects are fully reversible once the drug is stopped. And it does pay to remember that doctors do take an oath to ‘do no harm’. It would therefore be logical to assume any drugs that could knowingly cause permanent damage would not be available.
No. Wasn’t you, it was @CIL and she was hearing music but I do remember your doggy story now you come to mention it. So, that’s a second one for Amitriptyline then. Helen
Topamax made me disassociate, gave me mood swings, weird thoughts (I thought I was in a movie, among other things), and also started to make me aggressive a few days before I was taken off of it. It also affected my menstrual cycle. All of those issues went away when I stopped taking it though.
That was actually me. I posted about that about a year ago.
Gosh. There’s absolutely more of it about than at first imagined. It was @CIL’s post I distinctly remember not that I doubt for one second that you’d posted the same too. How did you work around it? Did it just stop or were you forced to quit the drug and try another. For somebody who as yet in life has not experienced any kind of hallucinations I would have found that a bit spooky. It’s bad enough dealing with what is there yet alone what isn’t.
Hi, yes CIL is definitely me and the one with music, big brass bands, choirs, angelic singing, xmas songs, and music I had never heard of before in my head/ears.
I can confirm than all my symptoms of MV have settled down to a whisper now. The only time I hear music in my ear/head is when I settle down to sleep. Its so slight that Im thoroughly used to it and enjoy it. I have been taking Ami for over a year, and weening off now. Just half a tab at night. How, did I get to this stage? Well for me, it was necessary to keep busy, read lots, not to speak of any of my very weird symptoms to anyone, eat healthily and exercise every day. Yes it has been hell but I wasn’t going to let it beat me. Never give up hope and don’t struggle too hard. Acceptance is key. You can do it too.
Did the doctors suggest you ever tried again or to avoid it completely and offer you something else in its place.
I ended up discontinuing Amitriptyline and my doctor was on board with that. I just didn’t tolerate it very well overall. Luckily I only heard music right before bed and it went away by the next morning. I wonder if it would have gotten worse with an increase in dose.