How long on prophylaxis?

1

Hi,

I’m just wondering how long most have to stay on preventative medication? Mine started off with no vertigo, but visually induced motion sickness, then the ear pressure and constant blurred vision (lasting months), now the short daily headache, eye pressure and hot face.

I’ve been on ami for 5 months and it’s helped heaps. The specialist said that its more classical migraine? Weird that it was considered vm then changed?

Anyway, he scared me when he said that its a big unknown and that some have to stay on meds for life. Obviously this scares me…and mine is complicated I guess, as it’s been 24/7 since March with a slow -though significant- recovery.

I just don’t understand why I’d be on them for life if I’ve made such huge improvements? I couldn’t drive for 3 months.

Thoughts please?!

2

The million dollar question :slight_smile:

Like you I am on Amitriptyline and have been for about the same time (nearly 5 months) and it basically gets rid of 80% of symptoms and all the worst ones (migraine’s, most nausea, all the visual vertigo, inability to watch TV or use computer for more than 30 mins) that made life, frankly, not worth living.

Thing is, the recovered ones are rarely on the forum. Some of those who have not recovered (yet) may have moved to the FB sister site (VM pro?). Haven’t seen many people who’ve come off meds (but look at Beatles909 - he recovered on NO meds after about 4 years? liv85 has managed to find relief with just supplements in the space of a few months)

I have a theory that MAV is actually a bad case of BPPV. I’d lay a bet that’s why I have MAV as sometimes I get very obvious positional vertigo and ‘the spins’. Hain states that BPPV can give you migraines. He also states you can have an acute period and then periodic relapses. I’ve had all that. The reason I mention that is because if it is all due to debris moving around your ear its anybody’s guess how long that will take to clear and the amount of it will surely vary significantly by person. I know that it must have blocked some plumbing in my ear as I get some auditory symptoms and a feeling of pressure that varies. Let’s hope that stuff dissolves asap!

Speaking personally I’m a lot better than I was even 3 months ago, but my symptoms have waxed and waned since and some things have got slightly worse - I can guarantee spins at the moment by moving onto one side in bed in the morning, but I could almost guarantee you that in 3 months I won’t get that anymore. I used to get a fluid movement sensation and a dripping noise, but that has gone after having had it for over a year and a half. I had a spell of nausea on and off for a month during my medicated period, but never feel nauseous now, so that’s something. I’ve had short periods recently where my tinnitus has disappeared for a couple of hours, only to return (grrrrr!) so I wonder if i’ve got some form of secondary hydrops.

It’s probably harder on meds to determine how much better you are.

Psychologically I’ve definitely made the most improvement - with every day I get more cheerful and l look forward to things more. The condition has let up just enough for me to become more philosophical and accept my situation. I have grown used to the tinnitus, and the tinnitus seems to have decreased a little.

I’m hoping i’m not going to have some crazy big relapse and things keep continuing to get better.

I’d agree with you though - on balance, recovery has been glacial, but it has been happening.

3

Thank you for your response.

I have only got half a spin at the very beginning. It’s mostly been nose, eye, ear pressure and golf ball 2 min headaches. My vision isn’t 100% yet either. I’m
Currently on 35mg ami with the suggestion of 50mg.

I don’t know, mine doesn’t feel bppv-ish. It’s never postural. The visual motion sickness/disorientation has gone (like my girlfriend)…admittedly, I previously -and have now of course- depression and am for the first time attaching that with 4x therapy sessions per week…(wondering whether that may have some indirecte effect?)

I feel about 80% now, but living like this permanently cannot accepted…surely. I feel socially debilitated (yet to drive at 100kph).

I figure that if I’ve improved during 6 months, surely is keep improving to possibly baseline?..or maybe that’s wishful thinking.

I have goals to study and get a better paying job, but that all looks like a pipe dream feeling like this.

4

Perhaps some MAVers are mainly about migraine. My vertigo condition started acutely for a period of 5 weeks without any episodic fearsome migraines so I’m sure I have an underlying inner ear issue. The migraines came along later after the vertigo had relapsed and so did the auditory symptoms.

I’m 45 and have accepted that the rat race is on hold for now a little, but sure I totally empathise - I was doing really well with my career until this hit. I’m back at work but hardly the competitive manager that I was (but in some ways the stress that brings was not pleasant either).

I’m on 20mg and that eliminated the migraines - I’m fairly convinced in my case it is because it improved motion tolerance due to its vestibular suppressant effect. My vision stability has improved too which I believe has cut out the visual vertigo. I tried 30mg but it just made me feel more dizzy, but everyone is different so I’d definitely give a higher dose a go if you can handle the side effects (for me the only ones I have now is really the slight constipating effect and sometimes it can feel like its harder to pass water - forgive me for being so frank)

5

Totally forgiven. And you’ve had this for how long?

Unfortunately I still get little headaches. I was headache free for 3-4 weeks with only driving -visual dizziness, then I quit coffee because it made the dizziness worse, then bam!! Migraine time!

I’m just curious if this thing changes? Like I was confused that the specialist now called it a classic chronic type due to my vision being the main component -and was/has been for months- when ironically it was considered vm due to the spatial problems I had.

6

I had imbalance for 5 weeks, apparently fully recovered, then a 5 month break (but with an odd but brief feeling of fluid in ear when getting up in morning and the odd very brief dizzy spell on movement or at moments of high personal stress) then I was hit with a big relapse that began with light headedness and morphed into imbalance. After about 3 weeks of that I started to get tinnitus. The first migraine was about two months after the start of the relapse. Visual vertigo started about 4 months into the relapse. Ear pressure developed some months in and i’ve had one ‘fullness’ experience which has not been repeated. I started migraine prophylaxis about 6 months after the big relapse and 4 months after the first migraine, mainly because the migraines increased in frequency to about 1 every two days which at that point kind of made them self perpetuating as my sleep was so disturbed. Tried propranolol first, but that had no effect. My audiograms suggest some high frequency hearing loss in bad ear (but apparently no low frequency loss so typical of menieres)

I don’t get vestibular migraines anymore, but I do get the odd headache now and then, but they are no where near as bad.

7

Wow, interesting symptom set.

So no vm anymore?

So 10 months - minus the 5 week ordeal?

Yeah propanol doesn’t sound good to me personally. I think I’m on the right med, I just need time.

I miss coffee and the social side of that.

8

Yep no vestibular migraines since about 4 days into taking Ami

I’ve had coffee and chocolate on occasion and the very odd beer. Not big triggers for me. But I rarely have it. Coffee usually makes the perception of tinnitus worse though. Yeah 10 months all in. Given that relatively short period it’s amazing how the symptoms have changed. Wish I’d started the meds earlier but at least I know what it’s like to be without them

9

Gosh that’s inspirational to me! So we can improve. Now I just need examples of chronic 24/7 suffered who are off meds without relapse.

10

My psychotherapist I saw for a while said to me once: “You can pretty much guarantee that nothing stays the same”

Whilst that didn’t necessarily mean better I took some heart from that! :smiley: