Posted , 12 users are following.
Hi. Most reports of menieres that I have read about seem to say that people find the vertigo goes off if they lie down and keep their heads still. Is it unusual to feel completely better as soon as you lie down? Do most people need to lie still or is just lying down enough?
Would really appreciate some replies as still waiting for diagnosis,
0 likes, 38 replies
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betsy70690 mistibluey
Posted
I don't always notice it going away right away when lying down. It may take a few minutes. Closing my eyes helped, and sometimes tilting the pillow up helped. But once it subsided I felt better.
JMJ mistibluey
Posted
Hi Misti,
In my experience, I don't necessarily want to lie down, I HAVE to lie down...and I have to lie perfectly still or else I'll throw up. During an attack of vertigo, there's simply no way I can tolerate sitting or standing...I don't have the balance, and the nausea is overwhelming. Just lying down doesn't do it for me though, I also have to take rescue meds Early on, before I was diagnosed, I would stay lying down for 12 or more and still be pretty sick. My physical therapist told me to resist the urge to close my eyes during vertigo, and instead to pick a single point to stare at. And I've given that strategy the old college try, but I find that I do better if I close my eyes. When I can open the again, it's a sign that the episode is passing.
What I'm seeing after several months on this forum, is that everyone is a bit different. It's amazing, really, how many different "normals" there are with this disease. But eventually, you always find someone who says "Yeah! That's exactly what I experience!" And as horrible as it is to know that someone else is suffering, there's a certain relief to knowing that you're not crazy and you're not alone.
Best of luck to you!
J-
dawn35319 JMJ
Posted
JMJ dawn35319
Posted
Dear Dawn,
You are so very welcome! It's been a life line for me, too! I'm so glad that you've been able to find help here.
Take good care!
J-
mistibluey
Posted
Hi Betsy and JMJ. Thank you for your replies. I am enquiring about this for a friend, for whom I a carer, and who already has several health problems.
I'm hoping that it's something like labyrinthitis which seems to clear up quicker, and not menieres which, if I have understood correctly, is a long term condition. Though from what I have read some people get it for a short while and then it goes away.
She got the first severe vertigo attack about 6 weeks ago. Vomiting too. Could not keep her balance at all.
But when she went to bed she felt better immediately on lying flat, and the room was no longer spinning. Not sure this is typical of meniere's.
Thank you both for taking the time to reply. Keeping a good thought for everyone on the forum with this nasty condition.
betsy70690 mistibluey
Posted
I have the same ongoing questions which is why I like this website. Menieres, Eustation Tube Dysfunction have some cross over symptoms and some that are very different. As stated, everyone is different. you can go Romany different ENT's, neurologists, dentists, GP's, and others and still get different answers. This week has been my best in several months for which I am very grateful. I used more of the advise from this site than the various Dr's and therapists visited. I have come from thinking I had/have Menieres to maybe it's ETD or Eustation Tube Dysfunction. Either way, I always feel better lying when symtamatic, after an initial feeling of vertigo. Sometimes I found by putting cotton in my ears which may sound funny, balanced by vestibular system. With that said, it's not always an easy rest, my brain may feel funny, I may have bad dreams. But with that said its better than trying to sit or stand and trying to be normal.
Debbieb34 mistibluey
Posted
If I feel an attack coming on, I would immediately take Xanax and a sublingual anti nausea pill, grab the mirror and wait it out.
My attacks lasted several hours.
This disease is not fun, I hope you get some relief.
mistibluey Debbieb34
Posted
Hi Debbie
I appreciate your taking time to offer support and advice. I wanted to thank you for the tip about mirrors. Two days ago when my friend was hit by another attack she had to get up from her bed to go to the bathroom just half hour after lying down. Really had to go! Everything was spinning so much that she could not even hold her balance sitting up in her bed. I thought of your post and I grabbed a hand mirror and gave it to her.
It was remarkable! At first she couldn’t even hold the mirror but, as she kept looking into it, the worst of the spinning went off and she was able to walk to the bathroom. She still had to hold onto walls and door jambs but she could get there and back. She was at a stage that normally she reaches after lying flat and sleeping for several hours.
How on earth did you discover that trick? I’m assuming that seeing yourself in a mirror helps the brain to realise that you are, in fact, upright and it helps the mismatch between input from the body and the ear. I don’t know. But it really helped so thank you so much for that.
I hope others might find it helpful too.
Misti
Debbieb34 mistibluey
Posted
Misti, So GLAD that this little trick worked! I can't remember when I discovered it but I'm sure it was during one of the episodes where I was holding onto everything, door jams, etc. We have a lot of mirrors in our bathroom and I'm sure I was staring at it and noticed it steadied me.
?I've even used the phone when I had an attack in the car (my husband was driving), I just turned the camera around.
?
?Debbie
mistibluey Debbieb34
Posted
You have given my friend some hope that she has some control over this. Hope is no small thing.
Misti x
Debbieb34 mistibluey
Posted
Misti, that's a great idea, I will start a new thread, I know any little help with this can be huge.
cherylgold mistibluey
Posted
If a bad attack occurs you really have no choice but to lat down. Or due to vertigo you could fall and hurt yourself. Laying down, head still, eyes closed, darkeness if possible. .....if you get nausea or need the restroom, it's almost a crawl to the bathroom.
Minor episodes of vertigo can be eased by lying down with head raised in a couple pillows.
Done folks feel they are better if they focus on one thing with their eyes. I don't. I'd prefer my eyes closed.
Living with MD over time will make you learn what works best for you. You'll see patterns that trigger it and learn what remedies it.
Good luck!
Day by day, hr by hr ,min by min desease.
Chergold
Lizzie1453 mistibluey
Posted
Hi, I now feel better if I lie down or at least the spinning stops but usually sleep for a couple of hours. At first it didn't help but after getting my crystals back in place and taking Betahistine regularly it did. Usually a bit fragile for the rest of the day though.
cherylgold Lizzie1453
Posted
If it's the crystals that is your problem, you are fortunate. With therapy the crystals all go back in place and everything's fine again. That means that you do not have Meniere's disease which is a great thing!
mistibluey
Posted
Thank you for all replies, comments and best wishes. I feel a bit of a fraud here as I don’t have this. Perhaps I should start a new thread for friends and family... but I am at my wit’s end; my friend already has several health problems and is visually impaired, also nearly deaf in one ear - nothing to do with Meniere's.
How does anyone live with this? I researched diets etc and she had started a low salt diet and a med the doctor gave her, plus some supplements that are meant to help. We were feeling a bit hopeful and she felt absolutely fine earlier, and then it just hit again. Now she is lying in bed.
At least she was at home. Two weeks ago one hit as we were getting off of a bus in town. It was a nightmare. Does this happen to any of you? What do you do when you are somewhere that you can’t lie down? I don’t drive.
JMJ mistibluey
Posted
Dear Misti,
I'm so sorry your friend is going through such a hard time. Has your friend received a diagnosis, yet? Has she been started on diuretics? Does the have rescue meds to take when she feels an attack coming on? (This would include Meclazine and something for nausea, like Glycopyrrolate , Zofran or Compazine. Additionally, it's wise to have an emergency call button to wear around the neck, if she's going out unaccompanied.
The big problem with Meniere's is the unexpectedness of the attacks. You. Just never know. That's why people are always trying to figure out what might be triggering them - One minute you're fine, and the next, you're completely incapacitated.
If your friend has been diagnosed with MD and conservative measures haven't been working, it would probably be worth her while to investigate inner ear injections with steroids. It's not painful. Most people begin to feel better after 4 or 5 injections. It took 9 injections to wipe out my vertigo. They can often give a patient several months or even a couple of years of complete relief, and then you might have to go back for a few "booster shots". I recommend them because they really and truly gave me back my life.
I wish your friend all the best. You are an amazingly good friend to be looking out for her this way.
Sincerely,
J
mistibluey JMJ
Posted
Hi J,
We have been friends for so long that we are more like sisters. She has been there for me too when I have needed support.
Still waiting for an appointment at the hospital; the NHS is under great pressure these days with increased population and reduced funding. Betahistine was prescribed and she is following a reduced salt diet ( this was from our own research, the GP gave no advice at all).
I’m not sure what you mean by “rescue meds”. Thank you for the information about steroids. Are you symptom free most of the time now? So glad if you are.
I am wondering what people find are triggers for them as I have read quite a bit about “screen use” online. As my friend is visually impaired she can only see her computer if she is about six inches from the screen. Any further than that and she has double vision because of her sight condition. I’m wondering if the the posture of leaning so far forward and having the screen so close is adding to the “mismatch” of sensory input. I am spending all my free time looking this up to try to find something that will help but, as you said, it’s such an individual thing.
Thank you so much for your informative replies and support. I have just replied to Debbie about her mirror tip. Any advice on what has helped other people would be very welcome. The doctor has not been much help but it really does help to read these posts from informed people who know what my friend is going through.
Thanks and best wishes to everyone
Misti
JMJ mistibluey
Posted
HI Misti,
Rescue meds would be meds that you always carry with you, and that you would take as soon as you feel something coming on. So, they hopefully rescue you early, before things get out of hand. Typical meds in the US would be Meclazine for the dizziness/vertigo, Glycopyrrolate or Compazine for nausea ...or Zofran ODT (dissolves under the tongue if already vomiting), and a mild anti-anxiety med like clonazepam, which they find also decreases dizziness/vertigo. All 3 types of med do have sedation as a side effect, so they also help you to stay calm and rest until it's over. The degree to which rescue meds will help you, depends upon how early you take them, and the severity of the vertigo attack. I wish I knew what the equivalent meds would be in the UK, but I don't....at least not precisely. Based on many posts that I've read, I see that Betahistine is often prescribed, and it sounds like the equivalent of Meclazine. And Cinnarazine (sp?) sounds like an anti-nausea medication. In my experience, all anti-nausea meds are not the same, and Glycopyrrolate works fastest and most effectively for me. Interestingly, it's the oldest of the anti-nausea meds, and was traditionally given to mothers for morning sickness!! While Zofran, which barely works for me at all, is a relatively new drug, and most often given to cancer patients to deal with chemo-induced nausea. You just never know. I'm not sure what would be the UK equivalent of Clonazepam..
Yes. After 9 steroid injections, I've been vertigo free for about 8 weeks n! I consider that a miracle, and I'm so very grateful! Most people respond after 4 injections, but I told my doctor to keep going as long as they weren't doing any harm. He promised me they weren't doing any harm, and then "alakazam!"....after the 9th injection, it was like night and day. I haven't even felt like I "might" have an attack! I feel so much more resilient! The only thing that makes me dizzy is having my head lower than the rest of me....like when trying to do Yoga. And, while I have good balance while walking, I still can't ride a bike. That's it! So, compared to how I was before? Yoga and bike riding, are very small sacrifices!! Well, there is the hearing issue...The injections didn't help with that, but the doctor told me that hearing is one of those things that typically is not restored with MD. With each episode, you lose a little more, and I had many, many episodes in one year: I've lost nearly all the hearing in my right ear, and still have very loud, fluctuating tinnitus. So, I look forward to getting a hearing aid for that ear. But again, to live without vertigo and that killing nausea? For me, that's been an incredible blessing. Although I mourn the loss of my hearing, because I've always been a huge music lover all of my life, and I'm often trying the patience of countless people because of my difficulty hearing them....Still, my hearing wasn't doing me much good on the couch or on the bathroom floor, constantly vomiting. I've been working on accepting my hearing loss. But the vertigo? That was something I couldn't accept. That kind of debilitation just wasn't something I could live with.
I agree with you that the "mirror cure" is pretty amazing!! I wish I'd known about that one a lot earlier!!
Wishing your friend freedom from the scourge of MD! And wishing you every blessing, for being such a good friend!
Sincerely,
J
mistibluey JMJ
Posted
Hi J
I have made a careful note of all the meds so that my friend can be well prepared when she finally gets an appointment. I will try to see which have British equivalents. The main problem for her is the vertigo as, when that stops, she no longer feels sick.
If she is at home and lies down, it goes off immediately; it’s only happened once when we were out. It was pretty awful and I don’t know how other people cope with that.
I am so glad that the steroid injections helped you as it sounds as if you were very very bad with it. Poor you. This MD is a horrible disease and, as you said, so many kinds of “normal” with it. My friend sends sympathy for your hearing loss as she understands the problems associated with the effects it has on communication and social life. Her loss happened many years ago and is nothing to do with MD.
Thanks again for all the thought and care you put into your posts. I have learned a lot from reading everyone’s comments. All best wishes to you and other MD sufferers
M