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Does MAV ever get better? Don't want to be stuck like this


#1

Does this condition actually ever get better? I’ve read through the success stories topic here on the forums but the general consensus seems to be that over time, with the help of diet and meds, MAV goes into remission. My own experience over 7 years is that MAV only gets worse. Lifestyle and diet hasn’t helped me in the slightest so I have i can’t rely on that. The majority of success comes from one of several meds too, based on posts here: Amitriptyline, Nortriptyline or topamax are the most common. Already tried those.

I have to admit that reading “topamax gave me my life back” or “diet changed my life” only fills me with dread, knowing those things which worked for others hasn’t helped me. Time by itself certainly doesn’t help either. “Time heals, the body adjusts” - nope. “the diet works wonders” - nope. “Amitriptyline worked in a matter of days” - nope. “keeping hydrated and changing my lifestyle is a huge help” - nope. “nortriptyline and making sure i sleep got me from 24/7 dizzy to 95% well” - nope. Its difficult to read things that are meant to be encouraging but are the opposite, using wotds like “saved my life” and “gave me my life back”. Makes me fear i will never be saved because the things which apparently make most people better did diddly squat for me.

It’s wonderful to hear people say they were bedridden but now their worst days don’t even make them stop what they are doing, no need to go to bed, they just carry on because even worst days aren’t that bad. That is what i aim for, that’s what i desperately hope for. But it’s so disheartening to read that the success for most people seems to be from things which failed to work for me.

I know this is just my defeatiat attitude caused by fear of being stuck like this, and i know many of you have had the same fears which is why I’m posting this topic because i know you’ll understand. I just need to reach out to others with this condition who’ve felt the same.

It’s hard to have faith without evidence, I suppose. That’s why it’s called “faith”.


#2

Yes people get better but we only have the same evidence in front of you. I know half a dozen people who’ve left the board during my tenure because they got much better and rarely if ever pop by because its a phase of their life that’s now, mercifully, over.

However, causes of this condition may vary and I personally believe MAV = Secondary Hydrops for many. Those conditions are indistinguishable, but Hydrops gets better over time if you address the root cause or the cause was one-off trauma. I know a boxer who had ‘MAV’ for over 3 years and has completely recovered. I suspect he actually had ear trauma, like me, but in his case from boxing (just like ‘Meniere’s Man’ if you’ve ever read the book, but his condition was more severe). There’s a lot of lazy diagnosis going on imho “it’s migraine”. I’m not saying everyone is in this boat, but there is clearly a root cause to the condition. If you can work out what that is and treat it, you can turn the tide.

Unfortunately recovery and what helps you along the way is very individual, but themes emerge:

  • a medication to get your life back and reduce neurological fallout and prevent migraines from blocking compensation.
  • medication for some seems to help reduce ear fullness … that’s an interesting observation on its own and may shed light on what is really going on for some.
  • light exercise and regular vestibular challenges to get the brain to adapt as much as possible (without going over board and ruining it with a migraine)
  • dietary changes like dropping caffeine DO WORK for most.

Yes unfortunately, for whatever reason, some simply struggle to find their way out. I have only sympathy but no answers why. The science and diagnostics simply aren’t developed enough yet.


#3

Have u tried benzos? The only way i can control the dizziness/vertigo is by benzos.


#4

I wish it was as simple as being able to cut caffeine. Diet didn’t help me in the slightest, I followed the Heal Your Headache diet, and i’m still clueless as to my triggers. It’s definitely not understood well enough.


#5

Nope, they haven’t been suggested to me. Are they safe to take long term? I know some people are concerned about their effect long term but don’t know if that’s just scaremongering.


#6

It definitely isn’t as simple as that. But it has helped in the latter phases of my condition. Intially it was extremely hard to identify any dietary relationship and things only became obvious when I started to edge into remission and things calmed down. The medication can also mask how badly your diet is affecting you.

I’m pretty certain I got better anyway but all of the treatment helped me get back from the depths of hell much more quickly.


#7

They are far less evil than the unbearable crippling vertigo and unsteadiness. I have used them for over five years. Easily one of the best medication ive tried(if not the best).


#8

To be brutally frank, In UK I think you’d find it very difficult to find somebody prepared to prescribe you benzos. Or at least I hope you would. They are highly addictive and as you were worrying about Buccastem doing long term damage I’d suggest steering well clear of benzos. Helen


#9

They are easily prescribed in india. I’ve heard of the benzo phobia and most of it appears to be baseless. Ive used them over five years and im still not addicted. As long as you stay within reasonable dosage you wont get addicted.
If you are finding it hard to get in other nations, i will suggest contacting a psychiatric hospital and explain ur problems to them. They are much generous with their prescribing. I get my benzos from a psych hospital too.
Without benzos i would be bedridden.


#10

Thanks for that. Glad to hear you are happy with them.


#11

I feel exactly the same as u. After 7 years of this now I just feel totally defeated and beaten by this illness.


#12

hi.
this is the way i think about it. i hope it is helpful:

1: first, accept that you can live with this condition. the evidence is there - you have stated you have been living with this condition. therefore you CAN live with this condition, even if it makes you feel awful. don’t wait to be cured. just find ways to live with it in the meantime.

2: after 7 years you are still living with it. guess what, that’s actually good news. it means it’s not killing you. it’s not as bad as many of the horribly painful and sickening life-ending diseases that millions of people get. so that already puts you in a positive category. I had a close relative find out they had cancer, get seriously ill, and die, all within a fraction of the time i have had this condition. it doesn’t affect my symptoms, it doesn’t make me feel better, but it does affect the way i think about my symptoms. another time i went to see a therapist and found out half way through the course that he (the therapist) actually had stomach cancer. it made me feel quite small, sitting there complaining to him about my dizziness. i found out that i can live with it until i get better, be that 10% better, 50% better, or 95% better, whenever that may be.

3: yes, it is unpleasant, at times severely unpleasant, and it makes life very difficult. but I know that people live with amputations, or with severe degenerative diseases, or killer diseases, or with all kinds of horrible things, and many of them still have very productive lives. if they can do it, so can i.

4: I think thoughts like: I can live with this condition, even if it’s horrible all of the time or most of the time. I think for most of us there are some times when it’s not so bad as other times. enjoy those times if and when you have them.

5: you might get actually get better one day. sure, you feel like you might not get better, but you still have a good chance of getting better, even if it hasn’t worked for you yet. keep trying, keep looking into what can make you 5% better. don’t aim for 100% better. aim for 5% better. are there things that can make you feel 5% better? if so, go for it. don’t be put off if something doesn’t make you 100% better. don’t give up if you don’t see giant leaps of improvement. keep a diary and see if you actually can get slightly better by making some changes to meds or diet or lifestyle, or simply finding a way to do things you enjoy while feeling awfully dizzy. (music, for instance). all these things can help to make you slightly better, not ‘cured’, but slightly better. [question: did all of the drugs have Zero effect?]

6: treat the secondary symptoms. the secondary symptoms often include anxiety and depression, especially if you don’t know what the condition is, or you can’t get a diagnosis, or you can’t seem to get any better at all. but anxiety depression can be treated, either with CBT or other therapies, or meds. and it should be treated. because actually the secondary effects can be worse than the primary effects. if the dizziness makes you feel bad, the psychological effects can make you feel double bad or worthless. actually you can be dizzy and happy - it is possible. but don’t wait to stop being dizzy to be happy. even if it’s small happinesses like having a cup of tea or enjoying some sunshine (with your eyes closed if it’s too bright) or talking to a friend or eating something you like.

7: Sleep. if you are able to sleep well, then it’s a certain amount of peace and recovery every day. if you are unable to sleep well, try to find ways to sleep better. i won’t try to make a list here but there are resources out there.

i’m writing this feeling slightly dizzy and with a weird fuzzy head. i wish i felt completely ok every day. i don’t. but, this is what i have got. it’s not worse than it is. it puts some considerable limitations on my life, but there are still loads of things i can work at and get to do. and some things are tough, but i try not to worry too much about those things…

i hope this helps in some small degree…

good luck!


#13

My response was getting long and then I read @gidlabu response which was similar but much better…


#14

Thanks for the lengthy reply, I appreciate you taking time to leave such a response!

To answer your questions, the medications all increased my migraine severity until it was absolutely unbearable. Meds meant to “prevent” migraine, gave me migraines. Even at the starting dose. I’ve only tried 4 but all 4 of the meds did exactly the same thing to me. There are 2 other meds used on the nhs to treat migraine but i haven’t been suggested those yet, being considered for botox.


#15

Maybe you mentioned some where else, but what was your starting dose for Amitriptyline?


#16

10mg. In the first 20 mins after taking a pill my symptoms would increase majorly and stay lile that all night and day. Then i’d take the next pill on the next day and it would increase again on top of what i already felt. It kept doing that with every pill i took until i could barely get from bed to bathroom, was so spaced out i barely knew who i was, the dizziness was so intense i could barely keep from having a panic attack and i felt gravity pulling me down so hard it felt weird just to breathe, and i was vomiting. Each one of the meds i took behaved the same way, just with the starting doses. I tried upping to the next dose just to see if it helped but i couldn’t stand it.


#17

That’s quite an extreme reaction, are you sure it wasn’t anxiety about the medication? (which is understandable when you are not used to them)


#18

Absolutely definitely not anxiety about the meds. Anxiety temporarily increases my mav symptoms bit nowhere near like that, it’s only a slight increase for a short while. I managed to last 3 months on nortriptyline, and 3 months on Gabapentin, even though each pill i took increased my migraine symptoms but it was very gradual and not the sudden dramatic increase i had on both Amitriptyline and Topiramate. It only stopped when i came off the meds. The worst i have ever felt with mav was when i took meds meant to help me feel better, ironically. Although on nortriptyline, i had the “extreme” reaction when i took a different brand of nort than the one i had previously been on, which was unusual but apparently happened to others on Nort too. When i told the neurologist about my reactions he just nodded and recommended botox.


#19

That sounds awful. I was originally put on Paxil which made things worse but I stuck it out for 6 months and then came off it. Then I went on Verapamil which eventually gave me Kidney trouble and all around made me feel out of breath. Then I went with Topirimate which helped the migraines a lot but gave me insomnia and nervousness a couple months down the road. Now I just started Amitriptyline a couple weeks ago. I started on 5mg it did increase my dizziness and MAV symptoms the first night. I still feel like my breathing is weird on Ami, but not nearly as bad as on Verapamil. I think it has to do with the drug’s effect on noradrenaline. Or… could just be a migraine thing…

It does sound like the drugs are genuinely failing you, although I would still recommend starting out on such a tiny dose that you can’t really feel if its doing anything and then go from there. With Verapamil I was told to take 120mg per day off the bat, and increase each week by 120mg until I’m at 360mg. Instead I started on 20mg per day for a week. Took me 3 months to titrate to 360mg. I’m sure I would have failed the med had I started on 120mg. It takes time for the body to adjust, and everybody is different, and some people might only need a tiny bit of the drug anyways, you might be one of those people and thus pushing yourself to increase the dose might just make it worse.

In my opinion that’s what happened to me with Paxil - if I would have just taken 1-2mg it probably would have done okay on me, but instead they prescribed 15mg and I felt like it just ruined my sleep and worsened my migraines.

Just something to consider. Maybe you go back and try like 1/10 or 1/20 the dose of some of those failed medications. After all, at some point, if the dose is tiny enough, you shouldn’t feel anything, right?


#20

If the neurologist recommends more meds to me i will definitely ask about micro dosing. My gp told me to start at lower doses than the ones usually recommended (i started on 15mg of Topiramate just once a day instead of the usual 15mg 3 times a day but i couldn’t even tolerate that.) i would rather try the injection treatments like botox or aimovig, but if i need to try more pills i will definitely want to micro dose although i would ejd up splitting the pill so small i would need a microscope to see it. Thanks for the suggestion :slight_smile: