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Meniere attacks away from home

Posted , 8 users are following.

linda79653
linda79653

I am  very fortunate in that in the 20 plus years I have had Menieres I have never had a full attack outside of my home but this is something i live in fear of. I often wonder what would happen if I was out alone and struck down by an attack? 

Would people pass by fearing I was drunk as I am throwing up? 

There are so many 'What ifs.....'  

I need to stay as motionless as possible for at least 6 hours until an attack passes so what would happen? 

How do you deal with your atacks when you are away from home?

i am considering a medic alert bracelet. I used to wear one but stopped after a period of remission but i think maybe it is tine to think about this again but this still doesn't solve the problem. 

After a cluster of attacks I even fear going out alone and rarely venture too far from home unless I am with someone. Do you all feel the same?

 

0 likes, 15 replies

15 Replies

  • Luluhere
    Luluhere linda79653

    Posted

    Hello Linda

    I have had attacks walking alone, standing in queues, shopping at highly lit supermarkets and in restaurants. I wear a Medibracelet and talk about Meniere's to many people. Once others are aware of the problem they are very understanding. I often get "Yes, I know, my mum has it". I keep on with my life and refuse to let it take over. There is so much to do and I hope that I can be as involved with life for as long as posible. My new GP said recently, "You are the only one who knows what is right for you, don't take any notice of us doctors - you are your own best friend and judge." Good words, I think.

    Hope this helps you and please keep on talking to others.

    Best wishes and keep the sense of humour (the best medicine of all).

    Lulu

  • fil39169
    fil39169 linda79653

    Posted

    Hello Linda, I have had MD for about ten years now and only occasionally have had an attack away from home.  Just as well, because like you I am puking and need hours to get over it.  I have had a couple in the car (husband driving, needless to say) and we keep Stemetil injections in a bag I take everywhere with me as these help me to get over the attack much more quickly, although not always.  I tend never to go anywhere on my own really.  And I don't like being left on my own as I am never in a state which would enable me to inject myself (the stuff has to be downloaded into a syringe and bubbles got out of it) as I can't even see straight.

    It is my worst nightmare to be out and have an attack.  You are right, people would think us drunk, and a medi bracelet would do little good as who stops to help a drunk and looks for  one?  No-one, they steer well clear.  You  need a neon light on the top of your head - "I am not drunk, I never drink, I am actually ill".

    The worst "out" one I had I was in the car the far side of Stonehenge on the A303 and the car felt like it tipped upside down.  Luckily I had my trusty sick bowl with me and my injections, but I had to put up with being driven when all I wanted to do was lie down very still indeed.

    Fil

    • linda79653
      linda79653 fil39169

      Posted

      I've never been offered anything other than betahistine by my GP. Between attacks and post attacks I usually take Sturgeron to help relieve symptons but my chemist refused to sell me these last week as she said the Betahistine should be doing its job and if not i need to go back to my GP!  Was none too p,eased to say the loeast as i was feeling quite unsteady on my feet and could really have done with the medication. 

      Linda

       Unfortunately if Meniere sufferers have no one to lean on we have no choice but to go out alone if we want any sort of life.

      i have not driven for many years because of it and feel much happier using public transport although i avoid the underground if i can help it. Although i think anywhere outside of my home would present major problems if i had an attack.

      Linda

       

  • peter16657
    peter16657 linda79653

    Posted

    Hi Linda, its a real problem my job entailed travling across the uk regulary, i always managed to get back to my hotel thankfully, although after retiring i started doing very limited consultancy, and i was in the boardroom of a new client, trying to impress them when the room started going and before i could make my excuses i was sick right over the boardroom table and then couldnt stand and had to be helped out by these guys who wondered what they had done recruiting me.I still travel but am very nervous when i do although i am in remission and hoping after 10 years its subsiding, but it will always be with me even if the physical attacks have gone
    • linda79653
      linda79653 peter16657

      Posted

      Oh dear, thankfully I never had an attack at work, i can imagine how embarrassing that would be. 

      It sounds as though your Meniere's may be following the predicted pattern. Mine went into remission for a few years but has returned with avengence. I cannot think of anything i have done that could have triggered this so have accepted that the attacks will always be unoredictable, hence my concern.

      i guess there are no answers really and even if i had someone with me on each trip out you cannot remain glued together. I'm wondering whether, if an ambulance was called. I could be carefully moved and transpirted home, after all I would not need hospital treatment.?

      maybe worth a phone to follow this thought up. 

      Linda

  • JinaMarie
    JinaMarie linda79653

    Posted

    I have the same worries but these days I don't get out much alone. I hate that...it has taken away my feeling of being safe...can't go shopping anymore by myself. I had a slight attack while getting my son from school one day...the driving can be a trigger. Luckily my husband was at home that day and came to get us...of course that wasn't before the school counselor walked my son out to the car and here I am a crying mess...embarrassed and it is hard to fill someone in on what is happening in a matter of minutes...unless they have had it happen to them they have no clue. Happened in a grocery store...I was with my husband and son...had to lean on them getting out of there...I'm sure I looked drunk! And then it happened at a restaurant as well. I hate it...it is such a helpless feeling and I'm sure the panic that sets in doesn't help matters at all. I have only had the diagnosis for two months now but had been dealing with it for nearly a year...it's clear to me that I may never feel comfortable going somewhere alone anytime soon....
    • linda79653
      linda79653 JinaMarie

      Posted

      My Menieres is a bit different as it i have periods of relative normality when i do go out and about but when i have my attacks I cannot move and need to lay as still as possible until they pass. I certainly couldn't stand, let alone walk as the world is spinning and my heart is pounding. 

      I went for a few years without any attacks so hopefully you will too. Unfortunately now that they have returned the worries have to. Lots of 'what ifs........'   It is not an easy disease to deal with. 

  • wen06862
    wen06862 linda79653

    Posted

    Yes I have had attacks while out.

    My attacks usually last for 12 hours plus.

    The worst was when trying to get home on a bus. I had to get off - clinging to the seats to drag myself off, managing to cling to the bus stop. Not one person helped - I called out to say what the problem was too. It took me 10 minutes to get away from the roadside - I sat on the ground and rang my dad - he came to collect me in the car - with a bucket - Every time we went around a corner I was violently sick - At least I got home...

    Another time I was in our city centre and an attack started - no warning, I never had any warnings - Again I was lucky to have dad come to collect me - The half hour it took him to get to me was a lifetime. While I was waiting 2 policemen walked past, I asked them if they could stay with me until dad came (I'd had my bag stolen while having a  previous attack a year before) They looked and laughed and said  "oh right, you need to take less of the booze"  If I could have I would have taken their numbers, but I can't see while an attack is in full force - disgusting to assume that - I haven't touched alcohol since being diagnosed with MD.

    I put a complaint in a few days later but never heard.

    Now I live in fear of having attacks while out - my dad is no longer here and my partner has MD too (met through the MD society pen pal page) so we hope that we don't have attacks at the same time (it has happened twice so far) 

    As a result I do not venture out much.

    • linda79653
      linda79653 wen06862

      Posted

      It is worrying that we often look like we are drunk at times. I just couldn't imagine how i would cope if i was out and i was struck done. It happens so quickly i wouldn't have time to retrieve my phone yet alone call for help. It doesn't help when people pass you buy and think the worst of you. 
  • DizzyDora
    DizzyDora linda79653

    Posted

    Hi Linda, I think that is what we all fear, it's only ever happened to me once. I have a few other chronic conditions that cause me to need a wheel/mobility scooter. After a long run of attacks everything seemed to calm down. I decided I would give myself a little after being so ill, so booked in to have my hair done. Everything went fine had a cut and colour paid up then went out and got on my scooter. I remember feeling a bit odd so thought I'd better get home quick. On the way I have to go under a railway bridge, by the time I got to it I couldn't even see so I did a U turn in the road to go back to the hairdressers for help. I was vaguely aware of a car hooting but made it back to the shop. Luckily I live in a small village so we all know each other, lol, so the owner of the hairdressers brought me home and my daughter had to go and drive my scooter home. Frightens me because I could have been hit by that car!!!  Since then I never ever go out on my own or with somebody until I'm well over the attacks. Mine seem to come on every few weeks then get better for a few and so on. I've had times where there is no recovery for ages. How long do your attacks last for?
    • linda79653
      linda79653 DizzyDora

      Posted

      My attacks last for around 12 hours as well but i can generally begin moving very steadily after  6 hours or so. I then move from the floor and into bed or the settee where i remain for much of the day until i feel it is safe to move. It takes the best part of a week for my tinnitus to return to an acceptable kevel and for me to feel steady on my feet again. 

      I wish i knew what triggers these attacks but i don't, they just appear out of nowhere. 

  • Guest
    Guest linda79653

    Posted

    I have just had the 3 attacks. My first was on holiday on the beach, I had no idea what was happening to me and it was so embarrising when my husband had to get the lifeguards. I actually stupidly put it off for half an hour and just lay on the beach being sick. They did ask me if I had been out drinking- my one year old was with me so I think they believed me when I said no!

    I am convinced that I am not going to let it stop me going out. I have two young children so have to carry on. I do really believe that (most) people are pretty decent and will help if you ask them to. Don't be afraid but it's always a good idea to have a few contact numbers in mind so they can be called to come and rescue you! Make sure you fight it and don't let it lead your life xx

    • DizzyDora
      DizzyDora Guest

      Posted

      No I would never allow this to beat me, I have a few other fairly serious conditions to contend with. Life can sometimes be very difficult, I have pretty nasty times, but I always get back up again! 
    • linda79653
      linda79653 Guest

      Posted

      Good advice, thank you. I am not going to let menieres get the better of me but it is still important to  think about what would happen and what to do if an  attack occurs away from home. 

      I think, inevitably after an attack you feel rather vunerable and lots of these questions spring to mind. 

      Definitely need to look into some form of medic alert bracelet. 

      Thank you x

    • terry60070
      terry60070 linda79653

      Posted

      Hello i am new to this forum. but so glad i have found it, I myself have had 3 attacks since outside my home Centre of town to be exact! on all 3 occasions people thought i was drunk but... an ambulance was called and on the 1st occasion they would not take me home because i live on my own. 2nd and 3rd i was transported home but had to get in touch with someone to be there and stay with me. This is for the vertigo falling ect. I have suffered with meniers for 25 years and take Betahestine and Prochloperazine 5mg Beta being 3 times daily Prochloperazine when needed. I still attacks regular and to top it all i have now been diagnosed with Hyperacusis this is awful.

       

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