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Life after mav


#1

Hi everyone,

To make it short, my situation is the following: After violent attacks, I progressively become better with meds. During this long episodes (might last months), I lose touch with reality, there is pretty much nothing I can do. This situation has affected me so much psychologically. First, I lost my boyfriend, then my dream job and finally my social life, all my Friends.

So far I have managed to keep mentally strong, but somehow at this point I am having a bad depression because of all the things I lost and I badly miss. I really dont know how to overcome this.

Its great that I am managing to conquer my mav somehow, but what is left of my life is depressing: a job I hate, no Friends, no love…and problems with my family. I know I could try to rebuild this all again, but my mav comes back always out of the blue and it is really out of my control, so I feel very lost.

Anyone has felt similarly? How did you deal with it?


#2

Hey Harriet, sorry you are going through this, but you are far from alone, i’m sure many of us have had bouts of depression and feelings of helplessness when dealing with this horrible affliction, I certainly have.

Firstly, lets look at what you have achieved - you seem to suggest you have this condition under relative control, thats FANTASTIC!!! Well done you!!! We all know here that its a Herculean task! I’m sure things will only get better, but, sure you will have some down days. May I ask how long that’s taken you? And do you have any secrets to share for feeling better? What meds did you take?

“Life after MAV” sounds like a very positive thing - I’m looking forward to life AFTER mav! :slight_smile:

Secondly, boyfriend, well he clearly wasn’t good enough for you or simply not equipped to deal with illness in a loved one, not every one is. If someone really loves you, though, they will stick by you through thick and thin. You don’t love a person just for what you can get out of them! You are now free to find someone more suitable, but rather than searching, just live your life and try to mix with people more and you will find someone I’m sure! One of the crazy things about MAV is it doesn’t usually make you any less attractive, so put your best foot forward, put on some nice clothes and get out there!

Same goes for friends - it doesn’t sound like you could have had many people in your life really worthy of that title! But maybe its partly because you slipped away, didn’t engage them which I’d fully understand - how about you reach out to a few and try to make an effort to meet them at a time when you feel strong enough?

Job - well let’s not go there - its really tough to have MAV and hold down a demanding job, most employers are either not understanding enough or simply don’t have the resources to deal with your special circumstances. But if you hate the current one (and well done for holding down a job at all!) you really ought to consider making changes if you have the strength?

How old are you and where are you based? Perhaps you could meet some like minded people?

Have you had any counselling, it can be REALLY helpful, I’ve had a bit and I was surprised how useful it was - ask your GP (local doctor) to refer you to one if you can afford it or have a free national health system

All the best and know that even healthy people get down from time to time! And almost nobody grows older without having some health issues, so its completely normal for something to go wrong :wink:

Chin up!

James


#3

I think James has pretty much said it all but I would just like to add that this disease is invisible to others and so people really find it hard to understand which makes it difficult for them to support us. I have had so many people say I am making a fuss, it is all a bid to get attention, I am boring etc, etc, etc. For the last 3 days I have had full on VM symptoms and it is very icy where I live so I decided I needed to walk my dog using a walking stick as I am so unsteady it was a lethal combination. Well people have treated me completely differently actually offering to help me! I hated using the stick but it seems it is the physical trigger that has allerted people to the fact that I do indeed have a problem. Nothing I have said in the past has had any effect so maybe if you do the same people will listen to you too and not judge you because according to them you look well. Just a thought. I hope you have some respite soon. It is a very difficult disease but it is possible to feel better even if you get knocked back from time to time.


#4

Turnitaround and Revolving have pretty much said it all. I don’t know about after…but there certainly is life WITH MAV. I’m living proof - I’ve had Menieres’s for almost 50 years on and off, which appears to have morphed into MAV during this last year. Certainly it is more difficult to live with when you are younger, but you have just got to keep on keeping on.
I have never been on meds - basically I had never been offered them nor heard of them till finding this forum, but now seem to have some sort of control using ‘natural’ remedies…or maybe it has gone into some sort of remission like Meniere’s does??? Either way, I’m surviving!
I hope you soon feel better about yourself, and as James says, hope you soon find some friends worthy of your friendship. Having an invisible disease is very de-moralizing, and few people understand!
Good luck!
Beth


#5

Thank you all for your kind words and encouragement.

James, I have not conquered mav, I just have good months/weeks, followed by bad ones. I do not want to post a success story because I dont consider myself as such yet.

I dont have any triggers, so I just pray for the meds to work and keep on with life trying to forget about mav.

Life with mav is just a battle trying to fight it, life after mav is another battle trying to catch up with all that you postponed or dropped because of it. Its exhausting.

I cannot talk to my family about this because I know it breaks their heart. They see me suffer and want to desperately take me to every doctor and find a solution, It is certainly heartbreaking to tell them that there is nothing to be done, just keep going while I feel sick. With Friends is simply having to stop all activity, then trying to get in touch with them again, then cancelling on them again…

Then you have the people who of course think that it is all psychosomatic and that you are just a very weak person unable to cope with life. It is incredible how many people make this annoying judgement. Sometimes I get so upset that I wish that they got mav for a while! One friend got to tell me that if I had three kids and a more demanding job, then I would not have time to complain…how insulting is that?


#6

I have the very same fluctuation. On the plus side I find it amazing how well I feel some days considering how bad I became on prior days.

Yes its a very annoying condition that is so invisible to the naked eye. Margaret’s walking stick story is very enlightening.

I live in hope that this condition is self limiting and we simply have to bear the symptoms until they ultimately dissipate. I’d love to say I’m much better after nearly 2 years since this all began with my initial imbalance attack. I’m not sure i’d go that far but I do know i’m much better at coping and the anxiety has all but gone, which is definitely a big weight off the shoulders so i’m grateful for that.

I guess my biggest fear is hearing loss and if the meds cease to work. It’s hard to say if my hearing is getting worse, but it definitely fluctuates a little and some days the tinnitus is really annoying

We all just need to keep strong. I think it won’t be long before medical science unlocks the hidden secrets of these ear disorders and comes up with new therapies.


#7

Harriet, sorry about how down you feel…I think we all know the feeling! Unfortunately no-one can actually help you except yourself - and yes, I know how that sounds!! - I was right where you are now less than 2 months ago. I think the most depressing fact is that there is so little out there about what appears to be a pretty widespread affliction. Everyone knows about "migraine’ ( the headaches), or ‘depression’ or 'bi-polar…but our particular branch of problems goes un-noticed, and because we look O.K. it is sooo very often considered to be psychosomatic! I had the experience when all this started and no-one could diagnose the cause, where a DOCTOR told me to go and have a baby and I would’nt have time for dizzy spells!! 2 (now adult) children later…here I still am! I STILL sometime wonder if I am indeed making it happen when it is bad and I can’t pinpoint a ‘cause’! Now when that happens, (if I can look at a computer screen - BIG trigger for me) I come to this forum and read posts from others just to re-affirm that it’s not only me!
I think you should try to think more about the trigger thing. I have been looking for THE elusive trigger all my life, and am only now understanding the concept of small ‘additive and accumulative’ triggers, which has helped me a lot!!!

James, don’t stress too much about hearing loss. IF it happens, it is fairly gradual and you learn to adapt better than you would imagine! I think you will find is that it is the tinnitus which fluctuates and makes hearing a bit more difficult on occasions, rather than actual hearing loss. If the meds cease to work, there will be others, perhaps new and improved, available.


#8

Voice of wisdom. Thanks Beth.

You make the point about fighting. Perhaps others have been less fortunate than myself, but I’ve never really had to fight hard in life. I grew up in a reasonably privileged situation and my first great job was easy to get. The pay was good. Apart from losing my parents this is the biggest challenge life has thrown at me. And I will have to fight hard to keep it together. I’m not used to that, Im a fish out of water. But I have no choice.


#9

It’s an unfortunate fact, James, that life is not always fun. The longer you are around, the more you learn this. Fighting to keep on top of things is the only way to go, otherwise one just ends up sad and lonely. No need to ask how I know this! I think the Meniere’s at age 20 was probably the first really hard knock for me as well, and like one of those balls on an elastic (you’re probably too young to remember them :relaxed:,) but it just kept coming back to slap ya down again. I was fortunate enough to still have my parents (more on that later in another thread) around to help when that happened and our kids were small. And then there was other stuff…but on the other hand, a lot of my peers are no longer here, or have had bigger battles to face, so I guess that makes me fairly fortunate.
You obviously research a lot and knowledge is power! You’re stronger than you think, I’m sure you’ll keep it to-gether 'cos as you say - there just is no choice!!


#10

After one month in this fórum I found out that, partly it makes me feel better, partly worse.

The thing is that when you see so many people out there with the same problem, it makes somehow the problem more real. When you realise how many people are suffering for a long time is really discouraging, makes me feel really down. On the other hand, the success stories can also bring me down as I start wondering why I am not there yet.

My combo of medication right now is 50 mg of amytriptiline and 0.5 of flunarizine. Some days I feel Im over it, some days I feel Im back to square one. Fluctuating so much lately, makes me very anxious.


#11

The fluctuation is soooo annoying. Glad to see another Ami user! :slight_smile:


#12

Sadly, fluctuations are inevitable - and yes VERY annoying!!! Just when you think it’s gone…
Just remember that people who do get better, probably leave the forum, so we are mostly only hearing from the unlucky ones whose symptoms are hanging around longer than most.
Hang in there!


#13

I can certainly relate. The company I worked for just dumped me like a wet towel and I had made them tons of money. On top of that they humiliated me badly.

It is very hard for you now, but in the long run you will find the people that are right for you. Might take a while and it’s no fun at all on the way, but in the end you will be fine


#14

That’s disgusting. I’m also struggling with work though they were very understanding to begin with.


#15

Sadly, I think it’s human nature to get impatient with something you don’t understand and can’t relate to! And patience and empathy are not high on the agenda, especially in business these days.
Sorry for your troubles, Frank 183, but I hope it all works out for the best in the long run.


#16

Thanks @mazzy. Yes, I’m relatively stable with Migravent, Cetirizine and supplements, Dramamine if needed. Plus, after 8 years I learned to live with it. And I found a much better job, so fortunately I’m doing well there.

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#17

Glad to hear about the work situation!