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Seeking advice/reassurance

Hi, to try and condense my issue at present - i have had MAV for just over 3 yrs and was not diagnosed until a year later. I was put on Nort and increased dose to 90mg and doing very nicely feeling 95% most days. I was able to go back to work part time, go on holiday, go out with friends etc. Then my consultant asked me to start reducing the dose of nort to try and get me off it. Thats when my problems started. I reduced dose by 10mg every few weeks and got down to 50mg but then had a big relapse and could hardly walk across the room. Consultant thought i had decreased too quickly and told me to increase nort by 10mg. Well i had to increase to 70mg to feel normal again but then a couple of months later had another relapse and have now increased again to 80mg a couple of weeks ago and not feeling great. So confused with it all and keep analysing why i have had another relapse. I am following the diet,don’t take pain killers, sleep for 8-9 hrs a night, walk the dog twice daily. Im petrified that im going to relapse yet again and im feeling so fed up and sorry for myself!! This condition is the worst thing ive ever had and its so hard to explain the symptoms to people that have never had it. I wonder if my anxiety is now making the symptoms feel worse? I am just wondering if anyone else has had relapses and how the’ve recovered?

Here’s my theory: Ami and Nori shift reliance on inner ears to other senses. Your brain learns to overcompensate. Reducing your dose will re-expose the brain to more of the signals from your inner ear, so will need to adjust at each step. Absolutely you will feel worse to begin with but with time the brain may well recalibrate. I’ve not tried this yet but would love to lower my dose.

Relapses are par for the course. My conditon has generally got better but my feeling changes every few weeks and sometimes I have downs. However I seem to climb back every time and seem to climb higher so far. The extent to which this is as a result of me habituating to my condition and keeping calm is unknown but calmness may play a big role. If you avoid anxiety you will reap the benefits.

Yes anxiety will have an impact and in my view is part of the vicious cycle of MAV.

I have a theory that anxiety makes you more sensitive to inner ear signals AND raises the pressure in the inner ear as part of the normally helpful ‘fight or flight’ response. Both are a bad thing if your inner ear is not happy. So it’s very important you avoid worry. Easier said than done. Try to distract yourself with work, socialising, see a psychotherapist, go for a run or cycle, anything. Take photos of the dog on your walks with a nice camera and share with friends.

The fact that your consultant thinks it’s possible is actually great news! Have they experience of successfully weaning MAVers off meds completely? Them asking you to try suggests so! So be positive :slight_smile:

I’ve had MAV for 3 years too and I’m on nortriptyline, I’m at 50mgs now. I had a setback at 40mg for a couple of weeks but I’m back on track now. To get back on track I was really strict with my diet, sleep, making sure I relaxed at night and upped my dose. Just keep reminding yourself that you did it before and you will be 95% again soon. Can you book another appointment and maybe get another medication added in? Take things really easy and don’t let your stress and anxiety take over. Setbacks do happen and are normal I think. You can do this x

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Thanks for your replies. They make me feel much more positive! I think we all have down days at some point in this journey.

my consultant did say that a high number of his patìents have been able to come off medication completely (Surenthiran).

I am going to follow the advice of my fellow migraneurs and take each day at a time - thank you

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Woop woop. That’s fab news. That means the underlying condition gets better. Keep your chin up and take pleasure in the lovely things around us.

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Dr Surenthiran is my consultant too. We are in the best hands. When’s your next appointment with him? On my last appointment he asked me to start gabapentin alongside the nortriptyline but I’ve been too scared to start it as I’m feeling good lately x

Why did he ask you that? Are you still getting migraines?

He asked if I was getting any side effects from the nort and I said a little dry mouth so he said start the gabapentin too. I do get a lot of headaches with my MAV and I also get migraine with aura. He seems to give his patients who suffer headaches gabapentin x

that’s odd, you have side-effects you are not 100% happy with so he suggests introducing more meds? Or are you supposed to decrease dose of primary med at same time?

Yes he wants me to decrease to 30mgs of nort and take gabapentin 3 times a day. I’m worried about doing it as this is the best I have felt in 3 years and I don’t want to risk it by starting a new med and decreasing the nort all over having a slightly dry mouth but he is the expert so I know I should. What meds are you on?x

i think you are right to be careful there. I am on Amitriptyline@20mg nightly. I sometimes get dry mouth in the morning, but rarely at other times. My main remaining symptoms are fluctuating imbalance (but within a much more acceptable spectrum) , less fluctuating tinnitus which has very recently started to almost disappear for short spells and brain wobbles/shivers under artificial light (though this has recently improved too). I have some minor hearing loss at high freq. in my bad ear, though it would be nice if i could get tested during the short periods my tinnitus decreases as I wonder if it would show less or no loss. I believe I have some kind of issue with endolymphatic pressure in my affected ear, though this has not been confirmed by any medical professional.

Wouldn’t you go up higher on the ami to see if it knocks out your remaining symptoms? Dr Surenthiran asked me to go up 10mg every 2 - 3 weeks on the nort but I went up by 5mg a time and Saw huge improvements. I sleep really well now too. How long you had MAV?

1 year almost exactly, if you don’t count the acute “vestibular neuritis” 5 week period I had 5 months before the onset of chronic symptoms. I believe that period to be more like some complex BPPV issue. I had no hearing symptoms at all then. I also appeared to fully recover with very minor symptoms, then 5 months later: bam!

I rarely sleep badly now too, thank goodness! I can remember the time when I slept so badly which was in itself setting you up for a migraine.

Why not go up? I’m trying to limit the side effects and also give my brain as much chance as possible to compensate for my inner ear issue. My strategy is so far working as I have generally improved over time, if at a glacial pace. I’m already back at work doing 3/4 time.

I note that one board member managed to get better without any drugs. I’m not so brave and in fact couldn’t operate without them as I couldn’t use a computer so that would rule out going to work, but it shows what is possible. My compromise is to take as little as possible.

If I thought the drugs did more than symptom control I’d totally go up (ie they were a cure for the underlying issue). However, I’m of the opinion the drugs are simply improving quality of life and only time and luck will fix the ultimate issue.

Hi, my next appt with Dr Surenthiran is Jan. He did say the longer you have MAV without treatment the longer it takes to recover. I have increased to 85mg now so I will have to give it time to kick in. My worry is having another relapse on a high dose but if so I will just have to contact my consultant for a meds review.

Yes he told me that too. He used the nail as the example and my nail is in deep as I’ve had this for so long. I’d already had it two and half years before I was diagnosed by him and started medication. So how long you been on the nort and how long would you say you had been 95%before he asked you to start cutting down? Have you seen him since cutting down? I emailed him when I had my set back and he did email back but wouldn’t offer me another appointment. I don’t see him until feb x

Hi, he used the nail example with me too. I had the symptoms for over a year before i went to see him as i was diagnosed with vestibular neuritis first and i wasnt feeling any better and started googling and i found that i had all the symptoms for MAV. I think thats how alot of people have discovered the condition as its not a common condition. He started me on nort 10mg and every 4 to 6 weeks i increased it until my symptoms stopped. So it probably took me a good few months to get up to 90mg and I was then probably on that dose for a year maybe and felt great but did start to go off the diet a bit so probably should have been more strict with that. Were you diagnosed with something else to start with? Would you say you get more headaches than dizziness? I havent had a ‘head banging’ migraine for about 6 months but the dizziness when ive been relapsing is terrible.

P.s i havent seen him si since cutting down as i live in the midlands and its quite a long journey but i have asked for a telephone consultation when i did relapse and i got to speak to him. He said the relapses were quite common. My next appt is jan.

When I relapse it’s with dizziness not migraines. Like you not had one in 6 months.

It’s a very long story but I was diagnosed with anxiety/post natal depression. This started when my son was 4 months old so they put it down having a newborn and a traumatic delivery. I kept saying my vision was like before I get a migraine, dizzy, brain fogg, lights too bright, watching tv was making me worse, noise was too loud, short term memory problems, focusing problems, headaches etc but they just kept sending me away telling me to get therapy and that getting anxiety is as easy as catching a cold.

The headaches I get with MAV are not head banging ones, they are dull and always behind my left eye. I get it all when I have a setback.

I see my MAV & migraine with aura as two separate things. My migraine with aura would give me a banging headache but my MAV wouldn’t.

Did you both get headaches at your worst? Do yous get migraine as well as MAV? X

Sounds like uve been through a lot. The migraines that i used to get in my teens were always with aura followed by a head banging headache but they then fizzled out and i didnt get migraine again until 3 years ago when all of this started. I had terrible headaches and dizziness along with fuzzy head, lack of concentration, strange sensations in my head, noises in my ears, couldnt tolerate lights,loud noises.A lot of these symptoms have gonebut during this time i was off sick from work for 8 months. I can now work part time but get very tired and really struggle at work if im going through a relapse and waiting for the increased dose to work!