I wanted to share how my apt went with Linda Luxon as I feel I want to share as much info as possible in the hope it can help anyone reading this and struggling .
I must say I found linda Luxon far more positive and reassuring over dr s ! She told me that spaced out feeling and feeling like I’m in a dream 24/7 is VERY common with a lot of balance disorders. She also reassured me I will not be stuck this way! She did say migraine can eventually burn out but that medication will take it in to remission a lot faster.
When I showed her the meds I had tried she shook her head . She said 160mg propranolol was the highest dose she would give so that drug was fail. Also pitzotifen I got to 3mg she said I could go higher but I had given it a fair go also. BUT ami/ nort she said I did not go high enough she said most people need ALOT higher than 40/50mg. I want to stress this to anyone out there reading this. Do not give up on a medication until you have reached he highest possible dose under a neuro or neuro otologist ! I broke down a bit in the appointment out of sheer relief , she promised me she was going to get me well again especially as I am planning on moving to California in September .
She was annoyed I couldn’t tolerate the caloric testing BUT she said we won’t re do it . However she was adamant this is the only accurate test to determine inner ear damage . She does think I need VRT and I did explain I am quite a fit person but she said it’s irrelevant there are specific exercises that I must do to help my symptoms and she only mentioned a few who she thought were good . That I thought was interesting.
She wants me to see her colleague I wish I could tell you his name but it was rather complicated . However she wants him to decide what medication I try next , I had mentioned I visited dr Nandi and she said he was a very good doctor . She rates topirimate she did say yes it can have side effects but for some people it do-sent and can work very well.
So I am now waiting to see the new doctor who she said will see me every 3 months. I mentioned how a lot of doctors have just let me and so I have had no support or direction in what I’m doing with medication. She said this doctor will absolutely not do that.
So overall she was a very good person to see , I really wants reassurance that at 30 my life as I know it isn’t over . She said I have been very unwell I obviously explained my history . I asked what made it go chronic she said it can be many things and it can just happen. She said it dosent matter why but more getting on top of it and getting me well again.
She also mentioned that Botox CAN help vestibular migraine which dr s didn’t agree with. Interesting that she wasn’t keen on pitzotifen either. Goes to show how each doctor has there preferences. Anyways sorry for the long message but I really do hope this information is helpful to anyone out there. I am much more hopeful now that I will get on top of this mav once and for all and I can finally get on with life .
I’ll keep you all posted on what the new doctor says