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 Iām 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 couldnāt tolerate the caloric testing BUT she said we wonāt 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 itās 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 Iām 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 isnāt 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 didnāt agree with. Interesting that she wasnāt 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 .
Iāll keep you all posted on what the new doctor says
Thank you AmyLouise for the update, I found it really informative to read another specialistās perspective.
It sounds like youāve found reassurance on the meds as well, maybe some explanation why certain meds didnāt work for you.
I choked up a bit as I read that. I recognise my own fear and impossible grieving in it. Like you, Iām in my early thirties, I just canāt believe that this is it, I so want to have another go at life and I sometimes secretly promise myself that Iāll give it a really good go when Iām better, doing the things I love and not bothering with pursuing what society thinks is a āgoodā life. Being ill with MAV has made me more aware of my mortality, Iāve got a strong sense of how precious life is.
I hope the new doctor will help you find the right med
Aww Lucy I relate so much I cried in my apt she promise me this was not s life sentence and I must say I have been calmer since seeing her ! I do think thereās a way out of this for us we must keep paining forward . I know when we get our second chance we will do it so much better and god what a life we will live after this ! X
Some very interesting points Amy. Thanks for sharing.
They sure do have their own preferences. Funnily enough only yesterday I read in a Grampian NHS PIL a statement, Iād never come across before, that Pizotifen was most effective in children.
And their similarities. The PILs the neuro-otologist I saw referred me to all stated 50mg was starting dose for migraine prevention with 100mg being maximum. And Dr Silver of the Walton Centre writes extensively about the necessity of reaching the maximum dose. Dr Surenthiranās team refer to patients being 70% better months after starting treatment indicating perseverance to be essential. Most interesting. Helen
Sounds like you had a great appointment Amy. Did she mention the Cefaly device at all? I feel that itās really knocked my head/nasal pressure down as much as topirimate did.
Yep, it was about $500 out of pocket, but you get something like a 60 day money back guarantee if it isnāt working. I intend to keep mine. It also gets me super sleepy, Iām basically falling asleep by the end of the 20min preventative session, which is perfect for people with sleep problems.
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Thanks - very helpful. Interesting to hear another Drās opinion.
I have been thinking about getting a second opinion. I am certainly much improved but definitely not 100% yet.
Itās always best to travel in hope but I do wonder if expecting to ever achieve a āpermanentā 100% is realistic. After all true classic migraineurs tend to continue to get acute attacks so cannot rely on being 100% all the time, There is no ācureā. Why should MAVers be any different? MAV once it became chronic incapacitated me to such a degree for so long I never imagined Iād ever again achieve an occasional day without symptoms but I have this year, my fifth year in, and in fact my Best Ever was a ten day stretch end of March, felt wonderful! 100% for good stretches even maybe achievable but I cannot imagine it possible to be lucky enough to avoid all triggers all the time. Some hypersensitivity remains it seems. Pollen caught up with me the day before yesterday. What next. Helen
I agree. When I had chronic migraine a few years back (24 days a month), the headache specialists only ever talked about āmanagingā the condition, I think a fifty percent reduction in headache days was seen as success. Although, they did mention that for some āluckyā people the headaches disappeared (menopause was mentioned and removal of a stress situation). The drugs are the same, so perhaps we really just go into a kind of āremissionā if matters really improve. I also wonder if not all MAVāers ahve the same thing. For some perhaps a one off incident/trauma caused their issues, when this resolves they are āhealedā (e.g. a punch to the ear) for others I suspect we have some genetic predisposition and the potential for MAV has been lurking there all our lives, it just needs triggers to set it off and it becomes more difficult for our brainās to reset the more episodes we have.
I have been told in the past by ENTās (who misdiagnosed me with Menieres/endolymphatic hydrops) that the condition would āburn itself outā and it would all seem like a "bad dream " a few years down the road. Ha!!
I do wonder if anyone is totally free forever. For instance I had meningitis when I was 21 and then started to get bad migraines, they disappeared after a few years so I would have been deemed āhealedā . However, 7 years later I had my first MAV issues after a bad bout of labyrinthitis and although never totally free of some ear issues and had the odd dizzy week, for many years I was able to live normally: driving, travelling, drinking, late nights, managing 4 children etc. and then six years ago I started having bad migraines again, the frequency building up to the majority of the month, as I got treatment for them and they receeded somewhat the dizziness returned much more debilitatingly than ever before over the course of 2 years. So I wonder if whatever āitā is, it is alaways there lurking and just needs a bit of a shove from something ( extreme stress, ear infection, hormones etc) to be triggered again.
Sorry to be a downerā¦ just my thoughts. I donāt expect a cure at my age (mid fifties), Iād just like consistency to my days and to be able to go to events (such as my childrens graduations, weddings etc) and enjoy them without feeling dizzy and depersonalised.
That last post from me was a bit bleak, so would just like add that Dr S said that if someone gets treatment early then the prognosis is much much better. He used the allusion of a nail. Someone young and with relatively recent symptoms might be treated with just the diet, light meds and later some VRT, like a nail that had been lightly tapped into wood and easy to remove. However, an old lag like me is an embedded nail that will take a lot of tries to remove(treat). My treatment will be long with probable setbacks (hormones especially will be a factor) and difficullt.
So for younger people or recent MAVāers there is a lot of hope.
Hey @sputnik2 itās okay your allowed to be bleak we all have those days but you do seem to have bad years of remission with set backs which is kinda what I have had over the years.
To give some hope my sisters friend in her 40s had symptoms for 3 years daily she saw dr s and is now 90% better with the right combo of meds and diet same with another lady I know who went untreated for 7 years !
Iāve come to accept this will always b something I manage but I do believe I could get years of normality again like I did for 10 years . But Iām sure I will have relapses maybe this is what they mean by manage the condition Be nice if there was a permanent cure tho
Hello. I wondered whoās pinched my Hymn Sheet. Now I know it was You. Brilliant summary youāve written there. Just about says it all. Youāve recorded many of my own thoughts about MAV. We are very alike. Mine must have started pre-school but I had many years without it, then it really set in mid-life with increasing vertigo etc. All so very similar, and if I recall, for both of us misdiagnosed/untreated for many years and, just like you,
Iām sure we have some genetic predisposition to this and it really kicking in later in life can be disadvantageous to recovery. One advantage of the young - and maybe some others - is how good a vestibular system you started out with. It dimishes with age. Also thereās the question of how many times itās really been totally knocked out. Iām sure that figures too. I know my MAV is a āvariant balance disorderā. I feel it every day still. At one time I had both a right head tilt (always discernible to my hairdresser if not to others) and some sort of spinal twist (Iād not noticed til a physio mentioned it to me) My trunk when balance was tired would lean to the left. I stopped wearing striped tops because they made it visible but thatās both gone now although I still get the head tilt return temporarily with really off balance days. Iāve walked outside with a stick for four years now but the last month or so I find I can do short distances without it now comfortably. No doubt over time untreated we develop adaptions both physical and mental in order to function that become ingrained and difficult to change and we donāt so much expect complete recovery as some sort of consistency which makes MAV more manageable but then I was surprised to recently experience a ten days return to my Old Pre MAV self so itās not impossible. Helen
Be nice if there was a permanent cure tho