Posted , 4 users are following.
How do friends and family of Meniere's sufferers cope with the unpredictability of this disease? And how do you deal with attacks that happen away from home?
1 like, 8 replies
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mistibluey
Posted
My friend, who has been told it’s probably Meniere’s, but is waiting for hospital tests has been having more attacks. I can see, from the severity that some people here report, that she is not as bad as some, but worse than others. The last bad one happened last week. We were on a bus to the shops when it started and she took a Buccastem. By time we got off the bus she was very dizzy. I immediately called for a taxi to take her back home. She had vertigo and felt sick but managed to get indoors with my supporting her. I was sitting in the taxi thinking, “please don’t throw up in here”!
She managed to hold out – she thinks the Buccastem helped a bit - and as soon as we got to her flat I got her a chair and a bucket. The rest you can imagine. After that she slept most of the afternoon.
She is losing confidence in going out. Her attacks seem very linked to stress and emotional upsets. I think worrying about going out and resenting that she can’t is creating more attacks, but what do I know? Just my thought.
I don’t know what to do. It’s ruining our lives. For the next couple of days she got mild dizziness that sort of “washed over” her, but thought she could go out on the fourth day. But she woke with the room really spinning as soon as she sat up. It improved after going back to sleep. Yesterday evening she felt really good and the same again this morning. Now she had a slight wooziness and doesn’t want to risk leaving home.
Do other sufferers risk going out when they have that slight dizziness. She has not had this long enough to have clear patterns yet. This is making us both miserable. How do people live with this long term? I don’t have a car, we rely on public transport.
I don’t think I have really relaxed, asleep or awake since this happened. I feel as if I have been holding in the same breath since August.
I would welcome any advice from sufferers, or friends and family of MD sufferers.
Thanks
kelsey0817 mistibluey
Posted
I personally am a stay at home mom and we only have 1 car, so I don't really drive anymore. Since I don't drive, someone is always with me. I would be very nervous to go out on my own if I felt like I may have an attack. By now I can tell if I am in a "fog" and will likely have an attack soon. But I do feel like for me, stressing over having an attack makes things worse.
For me at least, having people who support me and don't make me feel like me and my disease are a burden makes a world of a difference!
paul_88958 mistibluey
Posted
mistibluey paul_88958
Posted
She has an appointment in early December at a good ENT department with a balance clinic.
Could I ask, did you already have migraine symptoms before the vertigo started? She does actually get occasional visual migraines,the classic visual aura, but not the headaches.
How did they decide that that was your problem? Is it something they can test for? And I am wondering how they treated you for that.
I do hope that you no longer get the awful vertigo/vomiting attacks.
JMJ mistibluey
Posted
Just wanted to Hi and that I hope is all well. Hope your friend is doing much better. I remember that she was having an important appointment sometime during December.
Take good care,
J-
mistibluey JMJ
Posted
Hi J. Thanks. I replied in your own "relapse" thread. M x
kelsey0817 mistibluey
Posted
I have been blessed with a very understanding family. My husband is extremely supportive and if an attack happens while he is at home and not at work he takes care of both me and our daughter. My parents live about 5 minutes away and are very supportive too. Between my mom, dad, brother, and sister someone is usually available to help me. Plus my mom is a teacher who never uses her sick days so she has a ton of them to take off in care I need her. I couldn't imagine having to deal with this alone. Over the summer when I was having attacks every week I was getting really depressed and my sister brought me over flowers and chocolate to cheer me up. I truly am blessed! Generally I haven't had any attacks away from home, but if I do we head home right away.
mistibluey kelsey0817
Posted
Hi Kelsey, it’s great that you have such a good support network. Unfortunately, my friend has neither family nor friends. I am all there is, and , at the moment, I am trying to be positive but not doing too well.
She has only had three attacks away from home but they seem to be getting more frequent. On one occasion we were close enough to a supermarket cafe to sit and wait it out for two hours. Then we got a taxi home when she could walk enough with support. Debbie’s mirror trick helped a little. ( I wonder if Debbie is not posting any more because she is feeling better - I hope so).
The other two times it was fortunate that we were either near a taxi rank or somewhere a cab could pick us up. If we had been in the middle of the shopping mall or in a pedestrianised area and she could not walk, even with support, I don’t know what we would have done.
Do people call for an ambulance in these situations or is it not enough of an emergency? I don’t know.
I am hoping for better “rescue meds” when she is seen in hospital. At the moment we are restricted to what I can buy over the counter in Britain.
Thanks for replying. All the best to you.