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Help words of comfort needed


#1

I am very sad to be in this situation
I have been suffering for two months now and i am desperate for a final diagnosis
I am sad cause no one is listening i think no one can feel what i feel my family - husband even though he is very supprotive - my doctors
I stopped going out and i start withdrawing from people. I cant handle going to a shopping mall where there are alot of lights flickering
I am on leave from work and i dont want to go back
I feel hopless and useless since i had a nice career and i am in huge dept to the back
The past few weeks were hell and nobody listen to me i feel i am in boat and cant get out
The feeling of rocking is constant and unbearable to stand
I cant live my life like this and i am really thinking of killing my self but i feel sorry for my kids


#2

Haya, I am so sorry to see your post and how you are feeling… please know that you are not alone!!! I just joined this forum a couple months ago, feeling very much like you!!! Please know that you are NOT alone, I know that those around me cannot possibly know how I feel… no matter how much we try to explain, there’s no way for them to comprehend. I understand that but it makes this burden no easier to bear. You are in the right spot for support! All of us I dare say have been in the depths of MAV hell and wonder how we can go on “like this”… you can go on!!! There absolutely is hope!!! We are all here for you!!!


#3

Hi,

I just joined last night and was diagnosed last week. Your words sound like my own. You are not alone and I am sorry you’re feeling this way. Whenever I am feeling especially down I watch one of my favorite tv shows. Even if I can’t watch it I just close my eyes and listen. Try to remember stress and anxiety are what this condition eats for breakfast.


#4

Haya,

This condition is treatable…It will seem overwhelming at the beginning but soon you will start managing it versus it managing you…taking your life is a thought all of us have had but never went through with it cos it is pointless…also go and see a “neuro-otologist” they are the dizzy doctors and they are super specialists…you can PM me if you need any help

read the below for a good summary of the illness and triggers.


#5

Thanks all for the lovely words
I am planning to travel abroad for a final diagnosis
I live in a small counrty and we dont have neuro- oto specialist
I will be seeing one on wednesday but i am dreading the flight
It is just a one hour flight thou


#6

ask you GP or family doc for some benzo like valium and clonazepam so you can stay comfortable on the flight…again benzo is only for really bad situations and not for daily use


#7

Haya, you’re not alone. It is so good you’re reaching out here for support. We understand what it feels like to be dizzy — and yes others around us struggle to know what it feels like, it’s so hard to even start imagining what it’s like.
Make yourself a “plan” — how are you going to support yourself through this, and live even with the dizzies:

  • which people can you draw on
  • what things do you enjoy
  • medical plan: which medication / doctor are you going to try next
    Etc
    On a daily basis make sure you pace yourself- stay active but don’t overdo it. Rest in between activities.
    You’ve got through two months, you’re going to get through what’s next.

#8

Hi Haya, most of us have been in this exact same situation. But you need professional help in addition to this forum. Most of us have had significant counseling help and training in things like cognitive behavioral therapy. Are you seeking help for your depression? It’s perfectly natural to become depressed with MAV, I still am from time to time.

The main things that kept me going, as you mentioned, is loved ones and kids. I just couldn’t bear the idea of leaving them. I was never very serious about ending my life, but the idea did keep creeping in from time to time as a potential solution. I remember thinking what is the point of all this suffering and why continue going? If nothing is fun, and nothing is meaningful, and I hate moving in general, and I feel basically worthless, why keep going? And eventually to keep going I would just tell myself something like:

“I keep going because I have MAV, which is a very treatable condition that takes months and sometimes years to get under control. I will do whatever it takes to get better. I will never give up.”

And I would say things like that as if it were a mantra, just repeated all the time and anytime I would have negative thoughts.

Good luck with your next appointment, you will get better! All of us on this forum have been improving, it’s just a matter of time and getting the right treatment. But also please do try to get professional help with your depression.


#9

Yep. My favourite mantra for a long time, came out of an on-line newpaper article on MAV, where somebody at Dr S’s clinic said people who had visited his clinic could expect to be 70% better after nine months. I’d never seen him, still haven’t, but assumed it meant after nine months of treatment, ie preventatives. I used to mutter it to myself all the time. Even marked the nine month’s end on my kitchen calendar and kept checking to see ‘how much longer to go’. It helped, Helen


#10

Haya, as @ander454 says, a lot of us have been there. I thought my son and husband would be better without me, but after that thought I sought professional help. I did psychotherapy (cognitive behavioral therapy) and I am co-managed by psychiatrist and neurologist. My neuro told me it would take a year, so as @Onandon03 says, I have May 1st if next year as my sweet day. I have improved a lot and I do everything I want. It is not pleasant at times but I do it anyway. I love my job too, and today I finished my class, and asked for feedback and students told me they learnt a lot and they enjoyed a lot the class. So, cheer up, there is hope and this is maneagable, it just takes some time.


#11

I am not sure what i can add, but my journey is one of success followed by failure. The meds work then either they don’t or my body can’t tolerate them. The good news is there are so many to try that you are far from out of options. I keep trying. as far as doctors, they are mostly mediocre to awful and occassional good one. But you are your own advocate. I don’t care what they think of me. Good luck, don’t let the disease shut your doors. Life is so precious. we are so lucky to be on this earth. As Jimmy Valvano once said “Don’t ever give up.” I won’t. Please, You don’t either.