Hi Adam, everyone
I’ve been on Pizotifen now for a few months to try and overcome my dizziness/brainfog. I’m up to 3 tablets a day now Adam but it really doesn’t seem to be doing anything, in fact, I’m doubting if it did anything at all in the first place. My ‘dizziness’ seems to come in cycles with no specific trigger. I use to go through patches where I’d be fine and then I’d wake up and feel the dissorientation and ‘fogginess’ which would then last a while before subsiding again. I was doing ok but at the moment it’s really bad. I’m actually getting spinning attacks which are like hot flushes of unsteadiness usually if I’m over doing it or something. This is scary because up till now it has only been like a constant fogginess or slight dissorientation. Adam, you mentioned that I might have a fistula once; I keep thinking about that. I’m thinking maybe they missed it during mt first lot of tests, maybe it opens and closes, hence the ‘cycle’ peroids. I’m really not sure. I need to see a Neurologist which I haven’t done yet. I’m confused…I still have Propanolol on standby, should I try it? My Dr has given me the go ahead if I want to.
When you said the room spun when you blow your nose, that sounded much like a fistula. That’d
definitely be something worth looking into, even though they are quite rare.
Have you tried tapering off the Pizotifen? Do you get worse? Often people find (including myself) that
when you stop the drug you realise it was doing something after all - but obviously not enough.
Which city were you in again Tibor? You really should see a neurotologist if you can, as they can guide
you through the process of treatment. There are brilliant ones in both Sydney and Melbourne.
The propranolol sounds a good idea to me. It’s very different amongst individuals as to what drugs
work for whom.
I have had the most success with Acetazolamide at this stage.
I’m in Adelaide. I had actaully booked to see a Neuro, but I cancelled it cause it was during a good spell. I want to go when I’m having a bad spell like now. I might re-book. do you know of any good Neuro’s in SA? I stopped taking the Pizotifen for a while, its hard to tell if it was any different because I’ve felt just as bad whilst on them. What kind of drug is Acetazolamide, and what are the side affects?
Acetazolamide does a few different things. Its used as a preventative for mountain sickness (short term),
epilepsy, rare forms of migraine and ataxia. It is also a diuretic but is not really used as a diuretic per se anymore.
If I had to name a drug it was most similar to it would be Topamax.
It too can cause kidney stones - so you have to drink plenty of water. It also causes tingling in the hands and feet (which isn’t too bad),
and some people get nausea or diarrhea. I’ve not found it very difficult to tolerate.
If it works for someone with migraine and they need to take it long term, it can be useful to have semi-regular blood tests as it can cause
rare blood disorders which can be irreversible and fatal. Not worth worrying about unless it does work though and you have to take it long term!
Have you heard of a Neurologist in SA by the name of Ray Casse? He’s supposed to be really good.
Haven’t heard of him myself but you might want to check these guys out
Its an organisation located in SA called VEDSA for support of people with vestibular disorders. I am a member
myself although can’t attend any of the meetings because I am in the NT.
They might be able to help out with the name of a neuro-oto or good neuro (sounds like you’ve found one already though)
Sounds great, I’ve sent them an email!
Thanks so much mate