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Questions to ask my Neuro Otologist


#1

Hi Everyone,
I hope everyone here is doing well and not letting this awful thing get the better of them. I have been tried to my wits end recently hence the post:
I have an appointment with an oto-neurolgoist tomorrow afternoon and was looking for some advice on questions that would be useful.
I have seen this neurologist once before and I made another appointment to see him again as I was feeling very poorly with vestibular symptoms which have calmed quite considerably since, nevertheless I am looking forward to the appointment as it is probably the only conversation I will have this year with someone who understands what I am talking about.

So a brief history (I have posted previously on this forum) I have suffered with vestibular symptoms for over three years, initial diagnosis was vestibular neuritis that developed into Vestibular Migraine. I had the caloric tests done to prove this.
Since getting the diagnosis I trialled a few drugs but have settled with Amitriptyline over the last six months and have little side effects and pretty good results, my quality of life has improved considerably really. After several months I had a major wobble where I was unable to walk very well, I could not move without holding a wall or furniture or basically bumping into things. This was a major setback but it has settled down a bit now. The setback happened after a family visit to my sister’s house that involved some late nights and also nights with poor sleep (very excited 6-year-old visiting his cousins). A couple of day afterwards I could barely get out of bed for dizziness (I know , how dare I try and live a normal life ).
As mentioned symptoms have settled a bit now. My dosage of Ami has increased over the months and I levelled out on about 30 mgs. The last few days I have upped this to 50 and have felt better although this may be a coincidence as symptom were improving anyway I think. I am reluctant to up the dose as ideally I want to be reducing it at some point but in order to keep myself afloat I have to take what makes me able to work and function.
My wife is pushing for a summer holiday this year, somewhere hot in Europe, so ideally I want to keep myself right for this as I pretty much ruined the holiday last year by having migraine symptoms all day everyday which has got me very anxious about this year (I was on propranolol last holiday that stopped working hence the change to Ami)
So do I continue as I am with the Ami or shall I ask to try another drug alongside such as a calcium channel blocker? I am not particularly au fait with all drugs hence the question.
Just looking at options to discuss with him really?
Any advice greatly appreciated


#2

One thing you could do is print out and take this flow chart with you. This is Dr. Hain’s flow chart that shows his thought process when prescribing drugs (and combinations of drugs). You could explain to your doctor that Dr. Hain is probably the top dizziness expert in the U.S., that this is Dr. Hain’s approach to drug treatment, and you would like to hear your doctor’s thoughts on (a) what he thinks of Dr. Hain’s approach, and (b) what his own approach and thought process is.


#3

This is great advice. It’s a good base to have a conversation around. Thank you!


#4

Just to add that the initial plan for drugs to try for me were:
1:propranalol
2:Amitriptyline
3:Topirmate

The reasons for this approach were purely from a side effect point of view, as in propranalol had the least, so try that first.


#5

Effexor is a first line choice for Dr. Hain. Propranolol did nothing for me. Topomax left me with side effects I wouldn’t live with. Amitriptyline is a favorite here, but it exacerbated my metabolic issues. So far (only 5 days in), Effexor is showing real signs of promise with minimal side effects. You might consider it at a dose that titrates slowly up to 37.5 mg.


#6

Hello all,

This is my 1st post after turning to this site for support with this terrible illness. I have suffered with MAV since May 2015 and like a lot of you have tried a LOT of meds. My neurologist has now offered me Botox on May 18th which i’m very much willing to give it a shot. Some meds worked a liitle and some I could not tolerate so she now feels it’s time to change tactics. I still take a small dose of Gabapentin as I suffer with ear & sinus pain , plus my neck plays a huge part when I have really bad days, it gets stiff and very painful. I’m having a short break to Spain 2 weeks after my Botox treatment, I have everything crossed it works…I would love just 1 day without being dizzy and off balance…

If anyone has had good results with Botox for MAV could you please let me know…

Take care all

Robbie I hope you get on your holiday!!!

Jo xx


#7

Hi Robbie, relatively new to this forum and only two weeks into meds, I’m following hain and similar to flutters experience, I’m seeing some positive results already with no side effect, I’m on 9mg and slowly tirating up to 37.5mg, I get the regular tab so I can quarter it. Good luck tomorrow with apt.


#8

Hi again

Effexor is a drug I have not tried or being offered. I may ask for a trial of this if I dont improve with Botox.

Keep me updated as to how you all get on with it.

Jo xx


#9

Thanks for all your comments. I hide my MAV from work and friends as best I can so it is nice to have some kind words and advice.
I will certainly ask about Effexor/Venlafaxine.


#10

Hi.
So update on the appointment. It went OK I think.
I had another hearing test that showed that things were no worse. This was a relief as I thought my hearing had got worse but I think it is the constant tinnitus that is causing me problems for hearing very well during conversations.
Amitriptyline has been doing a pretty good job at keeping many migraine symptoms away, I have very few side effects (freezing hands) so I can live with this. He saw no point in changing anything as the med is still working albeit I have had a minor setback (which has improved considerably now).
I asked about diet. He said that he had seen no evidence to suggest altering a diet to eliminate certain foods at all and would simply recommend a balanced diet. If you have certain foods and they upset your body then avoid. I was quite taken back by this as a lot of literature and guides seem to think that diet is a major problem/cause, his main point was that as long as I remained positive and reasonably happy individual then he saw no reason why I would not be able to reduce my medication a little later and make a recovery.
I asked about hydrops as I know there is interest on the forum about this and he said he had already tested for this and my results came back that this was not the case. I did not get a change to ask him about what test ruled this out though unfortunately.
Have to go now.
Cheers


#11

Hi

So pleased to hear yr neuro-otologist is pleased with you and looks forward to you having a positive outcome. Hadn’t really followed yr story - sorry - but so happy for you. Every success with conkering the MAV Beast makes for great reading for fellow sufferers and it’s so good of you to take the time to update yr story.

The comments on diet were interesting. The migraine specialist neurologist I saw never mentioned restricting any foods, she did enquire as to whether or not I ate a balanced diet though. As there’s so much info about the need to restrict certain foods I later emailed her to check and she said exactly the same as yours did. In addition I specifically mentioned caffeine but she said same applied.

Fascinated by the

because that’s something I have been alot thinking about recently. It’s great that you have been able to remain so and it must help.

However I imagine had anybody dared to mention staying positive to me in my Very Darkest of MAV Days, I’d now be serving LIfe for murder! I guess it has to come from within.


#12

Ha ha! This made me laugh. Hands up who has not felt like that with this horrible MAV curse…? Not many hands shooting up I bet! I am over three years into this now and have been tested to the limit. There is no doubt that my symptoms have lessened an awful lot, much of this I have to credit the medication but also there is the whole denial, anger acceptance process that I have had to go through. This means on good days I really appreciate many things in my life I took for granted a bit (getting a bit deep!?) before. I felt awful pretty much everyday for two years and had to dig very deep to not go under. Now I can look back and see the progress I have made, I can make out peoples faces in the street and recognise them (sometimes I am wrong though which is very embarrassing!). I can read and remember a car registration, this is a weird sort of game I have played since I got ill. I would glance at a registration and try to remember it often failing to get even the first few letters and numbers correctly, nearly always jumbling them up; I am much better at this now. I have adapted because of the brain fog, i make notes on my mobile daily to remember things then I don’t get stressed if I can’t remember.

Since i have been told by my otoneurologist that I am getting better and will recover I have been feeling really positive about the future. Having been told this alone was worth the trip to see him. I am realstic though and know that there will be good and bad patches along the way.
As long as the good ones keep coming!