10 years in with MAV

Specific Illnesses & Conditions VM/MAV
1

Not sure what to say but an a guy at 33 you has been dealing with this since I was 23.
I was suffering with what I thought was sinus pain for years and basically was about to have an operation and it reached a point where it all most have git too much and one day in gym I just felt horrendousmy dizzy.
Initially I passed around ENT departments and even saw Pr Luxon in London, all telling it was labrinitous and not compensated so went through hell for years but I continued working, got married in 2012 where I was happier and so the dizziness eased slightly but I 2013 I was horrendous again and broke down. Through a friend of friend I heard of Dr S and saw him 3.5 years ago now. He suggested MAV and through diet and massive trial and error with Nortriptyline life has got better where I have had months at 80-90% but still have my bad times.
Around 45mgs seems to be my dose.
I now have 18month old boy which as anyone with children knows is tough especially the sleep but he is amazing
Now recently and today I am rock bottom with the worse migraine ever from nowhere, sweating so much, feeling sick and also panic attacksā€¦
Recent months I have getting worse again even though Iā€™m still on 45mgs and gone back to a strict diet again.
I did go up to 50mgs late week an I am taking an it biotics for some trouble with water works that started from a strange water infaction last Oct that has left me with some issues

Has anyone been made to feel worse for taking penicillin/ antibiotics?

I have been to see Dr S a few times since but the last time was March 2016 where he put me in gabpentin and then Pizotren along with my normal nortripine but I just couldnā€™t get better with them and just went back to 45mgs.

Sorry for the long rant that doenst make any sense, Iā€™m just so lost again after 10 years of this and I know feeling down and depressed makes me worse but today if feel the worst ever.
R

2

That sucks, Dan. Sounds like you need to seek additional opinions. Iā€™d say you might have Secondary Hydrops due to a physical injury (barotrauma?) set off by the sinus issues, but youā€™d best see an expert. There has to be a related reason, you donā€™t just develop this crap from nowhere! Happy to recommend my ENT by PM if you are in or near London, UK.

3

Thank you for the reply.

Itā€™s just so difficult to understand how to control this symptoms and what sets them off. I know Iā€™m not the only one.

Aftrr reading through my diary Iā€™m going to drop back down to 40mgs as seems to be when Iā€™m. At my best, as I did up it to 50mgs last week which may set all if this off. Iā€™m also go to try gabapentin again 2 x 100mgs, if I can get an appointment with my doctor anytime soon.

Iā€™m reasonably confident that my sinus issues with in fact migraines as they have eased since taking nortriptyline and diet.
Iā€™ll look up hydrops though.

Iā€™m from Bristoland travelling a lot for work, around London and the South East, so I normal fit in a visit with Dr S when Iā€™m over that way.

4

Best of luck with change of dose, Dan.

5

You asked about antibiotics - yes, they can make you worse. My MAV kicked off from mild imbalance to full vertigo with all the works while i was taking metronizadole for a gut infection.
i donā€™t believe the antibiotics ā€˜causedā€™ the MAV as i was already having some dizziness symptoms, but it was a bit like pouring petrol onto it - whoosh.

antibiotics can cause gut issues and headaches - both of which are known triggers of MAV.

i know it is hard when you are at rock bottom - but try to stay positive. you have a bad condition, but despite that you have managed to start a family etc - which is fantastic.

there are lots of diseases out there that are much, much worse. MAV does make you feel like *#@t much of the time, and it can be hard to keep smiling.

Have you tried CBT (cognitive behavioural therapy) for the panic attacks? it really does help. you can get CBT sessions on the NHS or privately, and you can also read about it online. it basically gives you different ways to deal with unpleasant situations or symptoms. the anxiety is something you CAN get rid of, even if the MAV itself is hard to shake off.

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6

Hello, Iā€™m back again.

After the above last summer and trying it be medication again on top of nortriptyline, I settled back down to 45mgs alone. Around September last year I started feeling better about 90% most of the time after a bad summer and up until two weeks ago, where I have been hit with a relapse again. Huge head pressure and pain around my head and just feeling dizzy and disoriented. Iā€™ve been much worst with rocking add spinning sensations when resting and falling sensations.
Like most Iā€™m trying to figure out whatā€™s caused itā€¦
Iā€™m still on 45mgs but I have been able to get away with some foods, like chocolate and fresh bread etc for months.

Me and wife separated Iā€™m January but we are trying to sort things out and have been been for a couple of months but until now going through this stress Iā€™ve been ok.
Iā€™m guessing the recent change in the warm weather may have added the food etc buy I was fine during the hot weather at the beginning of this month.

I am thankful for the good period Iā€™ve add but when it comes back like this itā€™s harder to deal with again.

Iā€™m sorry to ramble on but Iā€™m just lost again of what to do and if there was anything else I could try on top of Nortriptyline. Iā€™m going to try and speak to Dr Surentirianā€™s Secretary tomorrow and see if there anything else I can try?

7

@gidlabu is a Dr.S patient and he does relatively well on the pizotifen + gabapentin comboā€¦something you might want to try to add slowlyā€¦and drop down on the nort slowly

8

I have tried both if these on their own with Nort but neither helped. Well I think 2x100mgs of Gaba helped for a couple of weeks.

9

I think I need to change this title to 15 years in nowā€¦ :grimacing:

I am going through another relapse and again unsure where to turn or even start think about getting out of this. The last month Iā€™ve gone downhill, so Iā€™m trying to be strict on my diet again, getting back to cardio in the gym, while still taking 50mgs of Nort like I have been on that amount for probably 4 years now. Iā€™m struggling with constant of balance, dizziness and tension/pressure headaches and in my top jaw.

However, there has been some light where the last 18months - 2 years I have been pretty good, at least 90% most days and only having the odd spell maybe lasting up to 4 days where Iā€™ve dropped down to 60%. This has especially been good where Iā€™ve even been having mature cheese, pizza and chocolate with no issues. Iā€™ve done so many good things and not being affected, big walks in the Malvern Hill, car event like Goodwood here Iā€™ve walked over 20,000 steps, multiple holidays, riding my motorbike completely not affected, training in the gym 4 times a week with no issues, concerts, comedy nights.
Most importantly, I had my second child in January 2021 and this time as been made easier to enjoy as I have less affected by MAV.

I am thankful that I have managed to enjoy all again recently and I kept telling myself how much better I was, which gives you the confidence to stay positive and keep the good momentum going. As like now, once you get a bad spell it knocks your confidence, you get depressed the circle make everything worse. I definitely not at happier times and when Iā€™m feeling positive and happy I am much better but then again is that because I feel better first ā€¦ haha.

I guess to sum up, Iā€™m in a crap place again but it has been much worse and Iā€™ve also been really good also. I need to continue to take as a positive make it my approach going forward as the most of us know, getting stuck thinking about it and how bad this makes us feel 24/7, doesnā€™t help at all.

Going forward Iā€™m thinking about going to see Dr Surenthiran again as I havenā€™t seen him since possible 2016 and Iā€™m considering Ajovy or Ereumad along with Nort. As over the years Iā€™ve gone from no headaches but dizzy with headaches and migraines now. Has anyone taken both together and are available through your GP?

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10

Have you thought about the fact that your medication might be blocking compensation? 50mg is quite a lot.

I was discouraged by my oto-neuro from staying on Ami and as a result, dropped it after 1.5 years.

I more or less compensated within another 1.5 years.

My bad ear is still bad (fluctuating tinnitus, very sligthly dulled sometimes slightly distorted hearing, feeling its under a bit of pressure), but my brain has relearned the vestibular signals, and I no longer have vestibular symptoms nor significant neurological issues (extremely rarely, I get the odd scotoma when tired)

11

That is one to give some thought but my understanding was that I use of Nort is too improve my threshold and therefore help prevent the migraines or the effects from silent migraines from starting.
I donā€™t believe that I have any ear relating issues to recover from, itā€™s just the affect the migraine/s have on me.

I will discuss this with Dr Surenthiran if I am able to see him. Last time I saw him he did say once I have a good 6 months to start coming off Nort and I have had a good 2 years but I donā€™t think I have had 6 months without at least a few days of feeling affected but maybe I should have still tried to come off. I was probably thinking, i donā€™t want to affect it while overall I was feeling much better.

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12

Be wary of ā€˜migraine ideologyā€™, but if you are comfortable with that explanation, thatā€™s up to you.

MAV means ā€œMigraine Associated Vertigoā€. Itā€™s an association not causation. Itā€™s just defining a set of symptoms, not a pathophysiology. Itā€™s not saying that Migraines are causing your problems, itā€™s just saying you have dizziness and migraines too.

Your average ā€œhealthyā€ person doesnā€™t get migraines chronically and continuously. Migraines are not a healthy state and there is a reason they occur. One driver of migraines is definitely vestibular instability (we know this because people with peripheral vestibulopathy get migraines).

If youā€™ve been unable to kick this, I would advise you to consider all possibilities, including ones you may have discounted:

You are right to explore improvements to your general health as we donā€™t fully understand all negative influences on the inner ear, though it is likely blood sugar/metabolic problems and stress are amongst them.

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13

Thanks for the replies.

I do understand what you are saying and I appreciate it. Itā€™s just seems like there are so my variables and reasons while this is so hard to pin point. However, I did spend my first 7 years of this doing VRT and on no meds at all and the improvement in my life came when on Nort after getting the dosage up and this has giving me months where I have probably only spent a couple of 2 minutes even thinking about it. It does seem evolve though, as at the start I never even got headaches but now I get tension headaches and aura (that started 7 years ago but with no migraine following).

Iā€™ll try and get an appointment with my Doctor and see what they may suggest. Although I gave up with them regarding this back 2008 after having it for a year.

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14

No problem, this stuff is horrible, so sorry you are going through hard times again.

Iā€™d take a fresh look at everything, you canā€™t have this destroy your life again. It should be getting better, not worse, as you work out over time what works for you, what doesnā€™t.

The challenge here is: in medicine there is just so many unknowns.

We donā€™t have a real truth in this area of medicine, thatā€™s the hard truth.

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15

Sorry youā€™re going through bad times,i know how it feels to finally feel well and then lose it all when VM comes back. Itā€™s really hard to deal with mentally and emotionally. Iā€™ve had VM for about 12 years now and have never understood what triggers my symptoms. Diet and lifestyle changes do diddly squat to help ease my symptoms or prevent triggers. I gave up trying to figure it out because it can lead to unhealthy obsession combing through fine detail of your life when instead you could be focusing on finding successful treatment rather than being disappointed and frustrated at not having answers. I cope better mentally when i just accept i have daily symptoms but itā€™s only temporary - i will feel well again someday. This condition is not well understood and youā€™re fumbling in the dark looking for answers which no one can give you. Trial and error is the only way to find treatment .i hope you find something that helps soon.

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16

You are exactly right, each time you have to go through a bad period, it feels harder and harder. I just know I canā€™t and wonā€™t go back to where I was being so bad. To be fair the last bad really extended period was back in 2013 and it all made sense after getting the MAV diagnosis. It was mine and my twin sisterā€™s 30th birthday party and we had a cheese board for everyone and all the cheese that didnā€™t get eaten came back to ours and I was eating a lot of it :sweat_smile:

Also one Xmas I was really bad and I had a lot of heartburn for weeks, so I was taking Gaviscon tablets, which I didnā€™t realise contained aspartame :man_facepalming:

So, when I figure out what has kicked things off again, I can deal with it and it gives me focus and lets me think rationally and calm, so my confidence is restored. I feel confidence is a massive help to getting through the bad times and you like you say not focus on an unhealthy obsession.

Thatā€™s the key, believing you will feel well again someday and itā€™s helped me hear someone else say it.

I know that Iā€™ve a had a pretty good period the last 18 months - 2 years until now on 50mgs nort and diet, so there shouldnā€™t be any reason why I canā€™t get there the same way, especially considering that I was having mature cheddar and chocolate regularly.

I think I kicked this one of getting anxious about having a busy social September after not really going out socially for a months and my birthday coming up, plus I for some reason decided to try yoghurt a couple of timesā€¦ This all mounted up and where I have previously felt off for hours or a day and could shake it in the last two years, I havenā€™t due to dwelling on how I was feeling.

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17

A post was merged into an existing topic: Miss Migraineā€™s Diary

18

Red flag. Stomach issues can have a massive impact on your inner ear as Iā€™ve discovered.

I think itā€™s something POTS like where blood pressure flows to the bowel and it changes blood pressure around your inner ears causing dizziness (and anxiety)

19

this is very interestingā€¦ it seems like a lot of people who recovered from MAV first healed their gut first

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