The actual flight was great compared to getting on the plane. Felt reasonably normal, except increased head pressure. Its all the moving around that sucks. Valium is a good call I think.
Yeah, maybe higher dose will help, maybe just sticking with if for a couple months, hard to say.
I know how difficult it is to wait things out.
Yep, I’ve managed depression earlier in life. I didn’t know depression came with Verapamil for others too, interesting. Anyways, its true I know how to handle depression much better than this dizzy crap!
Thanks so much , yeah I can imagine the airport is worse than the flight ! Do you get rocking ? This was my main concern while in the air , hoping it won’t be too bad .
Yeah it’s so hard I know you wasted a lot of time on a med and had nasty effects . I’m gonna try to stick it out u till I see dr s and pray my flight is ok . I can’t keep waiting to feel 80% it seems it’s gonna be a while .
I’ve been seeing a therapist for 6 months have to say it’s massicely helped !
I think the diagnoses does matter as the treatment for Menieres and MAV differed. I was diagnosed with Menieres in mid nineties a few years later with Endolymphatic hydrops, eventually with a question about " a new thing" called " MIgraine Equivalent" (as I was being discharged from the NHS) I had also seen consultant’s privately.
With Menieres I was given Stemetil for acute attacks, a diuretic , advised to follow a no/low salt diet and tried a few rounds of Serc with no effect, so was basically told that my body had compensated well and that since the Serc didn’t work I’d have to live with it. Despite doing my own research and buying US books, doing migraine diets and VRT on my own and asking to trial migraine meds I was only given them when I started to have chronic migraine several years ago.
I think diagnosis has got better as Turnitaround said upthread most diagnoses of Menieres in the 80’s were actually MAV. However, there is still alot of denial and misinformation out there. I was seeing a specialist at a migraine clinic a few years ago but when I told her that my headaches were abating a bit on Ami (prompting an NHS discharge) but that the dizziness was returning she told me that if the dizzines was without headache then it was something else and I should go back to ENT. She is “highly respected” but didn’t know or believe in MAV. My GP thinks it is all psychological due to recent trauma.
I wonder if many soldiers diagnosed with PTSD might actually have inner ear disturbance from the incredible noise and pressure shocks from gunfire, explosions and ordinance.
No amount of psychotherapy is going to resolve their inner ear disturbances, they surely have to wait for nature to do its thing (which will be slow!)
Many doctors go around saying that’s purely psychological, BS!
They probably dismiss cases of battlefield hearing loss as ‘noise damage’ without considering the effect that might have had on the Vestibular system and the knock on psychological impact of that.
I wonder if in general many cases of anxiety are in fact undiagnosed issues with the vestibular system which are too subtle as to be obvious with current testing.
From the patient perspective ‘tinnitus’ is easy to hear, but you can’t ‘hear’ (detect) noisy disturbance in the signals from your vestibular system unless your brain can’t cope with it at which point you start to feel dizzy or worse.
Gosh that’s awful! It really angers me to hear such things ! You poor thing I can’t imgaine suffering that long with no help I am so happy you found dr s he really is so knowledgable . How have u been doing on pitz ? Thinking to go up soon x
Thanks Amy. Been on the pitz since 9 September and went up to three tabs about a week and half ago. Doing okay, some improvement but a screamer headache at the weekend (not had a full on migraine headache for a good while). Have been told to stay on 3 tabs for 2 months and then go up another one if needed at night. By then I should have spoken to Dr S again. I’m kind of back to where I was before things went mental and put me in bed in late June and left me housebound for the next couple of months. I’m not sure if things have settled themselves or the pitz has helped as I was on the up before starting it. Hope you are seeing improvements too.
Doctors can be quite brutal. My orginal GP (back in the 90’s) told me to devise a way to get steam into my ears (to clear the feeling of fullness). I told him I could permanently damage my ears if I did that.
He also refused to refer me to ENT. I had to wait until he went on holiday and get a locum to do that . He then"lost" my notes when the consultant kicked up a fuss as the GP woudn’t prescribe Serc for me and I ended up having to get a private prescription and spend a lot of money whilst on extended maternity leave and so was hard up. The borough I lived in had a rule that you couldn’t change GP unless you moved address. out of a cachment.
An ENT I saw who finally diagnosed MAV discharged me with a migraine diet sheet. He said it was all down to caffeine and he had “real” patients to see with real issues adding that if I had the smyptoms I claimed to have on a daily basis I would have killed myself by now! What a charmer.
In hyh, Bulchoz talks about how consultants call migraineurs “pain badgers”. We are an irritating bunch.
Really glad to hear this @sputnik2 I guess it could be either but a good thing none the less . I’m 5 weeks on pitz it’s helped but need a bit relief so may attempt to go to 4 tablets I’m not sure how long it takes to work but haven’t seen more improvement since the first few weeks . Not due to see dr s till December so may go to 4 tablets before then . This bloody mav seems a hard beast to tame
Not sure what ‘pain badgers’ is supposed to mean, sorry? I have read consultants assistants being told not to book in more than two ‘dizzy’ patients to any one clinjc cos the consultants couldn’t stand it!
Oh, ENT’s full of ‘charmers’! I’ve always remembered the one who told me:
‘You shouldn’t be that ill with what you’ve got wrong with you’ - when I told him I had to stay in bed days on end because I couldn’t stand up, ie no balance, and, same ‘lovely’ guy
When He noticed I closed one eye in bright sunshine (his couch faced an all glass Fire Door through which bright low winter sun poured full into my face!), said
‘Well, you’ve got a funny eye, you shouldn’t expect to be able to maintain proper balance!’
Funny really, cos, like you, I’m another old nail, and I’d never previously had any problems with my balance apart from motion sickness as a child.
Must admit I never have had a balance consultant consultation where they held much conversation, certainly no Q&A’s sessions. Just most time spent in examination, then off you go. They ‘said’ more in their following letter. Helen
Btw I am not a ‘migraineur’. I suspect only a proportion of us are. I find that a depressingly superficial term. My MAV is from hurting my ear and my migraines were a symptom of that.
i have had days where i have symptoms exactly like Mal de Debarque, but for me at least it’s not a another condition, it’s just a variation of symptoms in the spectrum of those i already had. i had spinny days, and i had seas sick days, but it was all the same lovely MAV stuff.
two things re flying:
(a) if you have MAV/VM a plane journey might or might not give you a bad day/few days. for me, planes seem to have no effect at all - i think because (most of the time) they are just very straight and level. i actually find trains worse because they rock from side to side for hours… but i’m ok on pretty much all transport now. but actually you might find the airport harder than the plane as it has all the things MAV doesn’t like - artificial light, loads of people and colours moving in all directions etc, and stress. So - be chilled:snowman_with_snow:, take dark glasses , and give yourself plenty of time.
(b) if you have MAV/VM it doesn’t mean you are going to get Mal de Debarque (if that is indeed a separate condition), just because they are both balance disorders.
Thanks @gidlabu I don’t think I have mmds no doctor has ever said that it just does make you curious when they all cross over ! However I’ve had dizzies on and off since 10 years old so I know mine is migraine .
I was thinking that about the airport I’m actually like you cars and trains are much worse for . Did you ever fly when you were like 50 % better . I’m really hoping I improve more this month I really need s break. Flying never usually makes me notion sick so hoping I’ll b ok the airport tho that’s another bloody issue
etc, and stress. So - be chilled:snowman_with_snow:, take dark glasses 
, and give yourself plenty of time.