Finally!!! After 15 years I got to spend an hour with someone who recognised my symptoms - each one I spouted off he replied ‘yes’ understandingly. Every single ENT doctor I have seen was not even the slightest bit interested in my visual disturbances, general off balance, 24/7 dizziness, spinning at night, inability to read/write and watch television etc…of course the list goes on.
He was horrified that I spent all these years being treated for Meniere’s disease and having countless operations on a ‘good’ ear (my left). He did a simple test where I had to look at his nose whilst he had hold of my head and shook it vigorously to either side. He confirmed from this that I have a balance deficit in my right ear. He said that migraine could have damaged the balance organ without me knowing it and that the damage was being done probably before I became ‘symptomatic’.
To cut a long story short, I told him I was on Pizotifen and he said ‘oh no Pizotifen is rubbish; all it does it make you gain weight - you need Topamax. It’s brilliant and will help you greatly’. Fair enough I said. So I am going to peter out the Pizotifen and start taking Topamax. You apparently can take both as there is no interaction. He said to come off it if the side effects become too great and to ask my doctor for propranolol to try. I see him again in 6 months. So Topamax here I come!!
Your case is one of the reasons I am so adamant about being aware of misdiagnosis, being lead on a wild goose chase thinking it’s something else entirely or people just not realising how highly prevalent migraine is behind this dizziness garbage. I’m sorry you had someone messing with your ear thinking it was Meniere’s.
I have to add that although Pizotifen does have the unfortunate weight gain side effect for some people on it, that it does work very well for some people with VM. Topamax may very well work great for you but there really is no guarantee with one drug over another with this junk. One person’s silver bullet can be another’s misery unfortunately.
Anyway, glad this guy is on the same page and knows what he’s doing. The head jerks he did on you was probably the head impulse test. He was looking for a lag in your eyes catching up with the rapid movement of your head. If there’s a perceptible lag by the observer it indicates vestibular damage. Having said that, these tests they perform can give different results every time. Rauch said this is a hallmark of VM. A caloric can show a loss on a test one day and nothing one month later. Not sure if that applies to the head impulse test or not.
Hi there, it was Dr Zemansky at Salford Royal Hospital. I really liked him to be honest, he listened, recognised and understood and from reading posts on here about neurologist visits, I was prescribed pretty much the same as all the others, so will see how I go. Salford is still a good half hour drive for me which was a struggle, so seeing Dr S or Dr Silver is not an option for me at moment they are unfortunately too far away.
Yes Scott it sounds like head impulse test, never had it before, only ever had the ENT tests. You know I only found out last year that even 15 years ago when all this began, I had 30% loss in balance function on my right side then yet was never told nor told it was or not significant and then they operate on my left!!! I shudder really because I was so so close to having gentimicin injections or even worse nerve dissection!! in a perfectly good and functioning ear. Thank heavens I accepted that diagnosis of MAV and I found this site. Phew
By the way… I am in no way knocking pizotifen, have been on it since November of last year and it helped my daily headache so that’s something, although nothing for the dizzies etc. I am actually quite scared of coming off it just in case it WAS doing something and I hadn’t realised it (if you know what I mean). For 15 years I have been taking ‘menieres’ medicine, betahistine, bendrofluazide, cyclizine and stemitil and still are. Neurologist said to get off them as soon as I can and in the same vein I am a little scared of coming off them.
That’s great Angela. Finally you have a sensible diagnosis and I have my fingers crossed that Topamax will really help you. Can’t believe they operated on a healthy ear!! I think knowledge about VM is growing all the time so probably when you first got this 15 years ago, very few people knew about it. I really hope you now start to get your life back! x
I so hope so Jem. I could have kissed him last night when he understood what I was talking about. I skipped (well staggered with my stick) when I got out of there!
Did he say how much actual success he has in treating the condition, or specifically with topamax? There have been several on here who are helped greatly by pizotifen- I don’t see how he can generalize like that but I guess that is his experience.
Im so glad you finally got some answers… i hope the new drug helps you.
i was dizzy for 12 yrs with no diagnoises until just last month. My family dr referred me to a new Neurologist(sp) Im now on a new drug & it has helped with the frequency of my migraines.
I’m so pleased for you too. Words can’t describe the relief when you finally sit down with someone who nods with recognition at each of your symptoms and experiences, after months or years of having doctors look at you incredulously. Finally you have someone on side who knows their stuff. I really hope topamax works for you.
I also wanted to put in a word against the pizotifen weight gain argument. I am not slim and I was really worried about further weight gain, but none at all. In fact I decided to go on a diet at Xmas and lost a stone easily. Still not slim but the pizotifen certainly isn’t making me any worse. Just wanted to balance that one in case it puts anyone off what is actually a relatively safe and easy drug to try.
Thanks to you all for your kind encouraging words.
Sarah - yes I agree with you about pizotifen, his statement was very general and no I didn’t ask for any reasoning, maybe next visit I will.
Nubs - I gained a stone on pizotifen but to be honest I have eaten like a pig for months so I KNOW I cant blame it entirely on pizotifen. Its not like I have eaten like a sparrow and still gained weight, but it was nice to blame it on something The best thing about the drug for me was it made me sleep like a log, first time in my life that I have got 7 hours straight sleep.
Angela,
Am so happy for you that you’ve found a doctor who understands exactly what you are talking about when you describe all your ‘weird’ symptoms. It’s such a weight off your shoulders to know that, at last, someone can actually help you on the road to recovery. Can’t imagine the pain of all the years you have struggled through to get help. Unfortunately it is a story that is often posted on our forum.
However, now you have a diagnosis & can start your med trial - there are plenty of posts to read on Topamax (if you haven’t already!!) & good ways to get started! I read loads of them & found that a lot of people who had success taking this med were those who started on a low dose (12.5mg) & then went up very slowly with a few weeks between raising the dose. I started Topamax in January & had a few ‘glitches’ ( virus, etc) but have persevered & have now reached 75mg. Although I noticed a few minor imrovements the recent hike to 75mg has shown the most benefit with my balance & visual vertigo - and that is just in the last few days so I am really hopeful!!
Re side-effects: when I first started Topa I had more headaches & dizziness. I’ve also had ‘brain fog’, tiredness & nausea but these have gradually worn off so I’m now happy I’ve stuck with it. I must admit there were a few occasions when I felt ready to ditch it but had decided I was definitely going to get up to the therapeutic dose (100mg) and trial it for 3/4 mths.
Good luck - Barb
Thanks Barb. Must admit bit worried about the topamax to be honest but then I am worried about taking any tablet first time. So do you take it morning and night, unlike pizotifen when I have been taken them at night? Do they make you drowsy? You say they can cause initial headaches which is a shame because pizotifen stopped them. Oh well, its the dizziness and balance issues that I want to try and sort out which are more debiliating than the headaches. Its great to hear yours and other success stories so far - so hope it continues.
Just to put you in the picture: I was reluctant to take meds from day one but having daily horrendous migraine headaches I was willing to try anything!! The Dothep (a tricyclic) eventually stopped them but the balance issues & visual vertigo continued so I’ve been trialling other meds. I had been scared to try Topamax reading how ‘difficult’ it could be for some people but anyway I just got to a point where I was willing to try anything to get my life back!!
In the first 4-6 weeks I had headaches & dizziness (but nowhere near the terrible headaches I’d had previously - or the balance problems where I couldn’t walk on my own) but these side effects were manageable.
In case it made me drowsy, I took the Topamax at night for 8 weeks - starting at 12.5mg & gradually upping to 37.5mg.
Then I added 12.5mg in the morning to bring it up to 50mg in total. I stayed there for 4 weeks.
This week I added 12.5mg at night to bring that up to 50mg & upped the morning dose by 12.5mg to bring that to 25mg.
So now I’m on 75mg. It was a big ‘jump’ & I felt very lethargic & brain foggy for two days but fine by the third day. I
think my brain has got used to the med by now so adjusted quite well!
I’ll sit at this dose for another few weeks before adding the final 25mg to the morning dose to reach 50mg night & 50mg am!
I’m sure there are many different way of achieving the same outcome! It can all get a bit complicated with cutting the tabs in half. Good luck & hope it works well for you!
Barb
Thanks for this Barb, really useful to me. Yes will definitely try a small dose and up it every week or so. Think I may get pizotifen out my system first even though he said I could take both, think I would rather have one or the other. Thanks again for your advice. Angela x
Angela,
I am SO thrilled you finally had a successful appt
I hope you are on your way to better days with a lot less symptoms! My appt the same day didn’t go so well…but I’m NOT giving up. It was just 1 Dr. I wrote about my appt on the post you and I had appts the same day.
Take care of you- so happy for you!! Gives me hope
Shell
That’s exactly how I felt when I made the trip interstate to see a specialist after 15 years of being told rubbish. I am so so excited for you. You really can’t describe that feeling when you sit across from someone who finally gets it. You feel like jumping over the desk and hugging them!
I too was on pitzotifen when I saw the specialist who told me to come off it and go on topamax.
It wasn’t hard to come off it and I experienced no withdrawls etc which I was worried about. I started on 12.5 mg of topamax like barb and went up from there ( slowly.) I had increased symptoms to start but that has settled and now I’m just waiting to increase again to 62.5 mg. it’s a slow journey upwards but for many it has been well worth it!
I must say that I think pitzotifen helped my positional vertigo a bit and I had considered adding just .5 mg or 1 mg to my topamax but haven’t yet.
Keep us posted and let us know how you go starting topa. I’m sure this is the start of better things for you
Hi Aussie girl yes I must say I am a little scared to come off pizotifen as it got rid of my daily headaches but didn’t really help the dizziness. Also little scared of starting topa but I have to. If suggested I take it along side the pizotifen whilst I wean off them but I think I want to be off them before I start. Will take it slow like you all have suggested and fingers crossed. How are you feeling now because you have had a few rough months haven’t you?
