Does lying down help

Hi David,

I can't lie flat either.  Need to have my head supported with a couple of pillows.  

J-

I'm sorry your friend just had such a horrible attack, especially since she was doing so well.

I haven't had an attack in over a year but still suffer from 24/7 tinnitus, hearing loss, balance issues and positional vertigo.

When I was having horrible attacks, I was put on a diuretic which I think helped, have you looked into that?

Don't give up hope, you have support here, even if it's only through a message. You are not alone!

I'm a strong believer that stress wreaks havoc, I'm trying to exercise, I do yoga twice a week and have a very supportive husband.

The unpredictable nature of this disease is unrelenting.

Take care of yourself as well, being a caregiver is not easy!

(hugs)

Debbie

I'm so sorry to hear that your friend has been hit so hard again with the vertigo.  I can remember it as clear as day....I've never been able to forget how sick and helpless that I felt....the vertigo and vomiting are merciless.   My heart goes out to both of you.  It's tough to know what to do when someone close to you is suffering. 

Please don't give up.  Help is out there. Keep that December appointment and collect as much information about what triggers it, and what seems to help.  The unpredictability of MD is maddening.  A lot of people know that stress triggers their attacks.  My own experience has been that attacks just come out of the blue:  I've had attacks when I've been vegging out in front of the TV, at the movies, at a play, just leaving the house to do errands - it pretty much runs the gamut.  I do think that once I have an attack, that I get so stressed out that I set myself up for more attacks during the  time that follows.  Does that make sense?  The stress of the initial attack just undoes me;  I get anxious and hypervigilant and I don't sleep well - and I think that brings about more symptoms.  

Since the inner ear injections have put the vertigo to sleep for the time being, I still experience episodes of ear fullness, very loud vertigo, fatigue...I just don't feel good..  It's like having an MD attack without the vertigo.  But I'm seeing that these episodes follow my not being so strict with the salt.  I'm seeing how sensitive my ears are to fluid balance.  I need to go back to being more disciplined around the salt.  

A medical alert bracelet might be a good thing for her to wear, or else an emergency pendant, if she's going to be out on public transportation by herself.  The pendant has made me feel much more confident about going out by myself.  

I know how easy it is to feel defeated.  But try not to lose hope.  I know how easily the hope can build up when it's been a while since an attack...."Oh!  I'm cured!"  And then...BAM!  You're on the floor vomiting your brains out.  It's horrible.  I would say that if she's been diagnosed, then work on acceptance that it will be around for awhile. Once I accepted it, I found that I was a lot more open to treatment options, and had more energy to do my research.

  You've both got a lot of people here who understand what you're going through, and who have a lot to offer in terms of information and support.  MD really stinks, but it stinks less when you have very real support and clear information.  

I wish I had more concrete options for you, but all i can do is offer my support and encourage you to learn as much as possible about MD.  One thing I'm not clear about:  Are the inner ear injections an option in the UK?  It might be something to ask the doctor about in December.  

Take good care of yourself, as well as your friend.  Don't be so hard on yourself.  The episodes feel so violent, I can understand your  being totally unnerved.  But now you know to expect the unexpected.  And as crazy as it feels, it's all very real.  If you get too hung up on stress causing the attacks, you run the risk of blaming yourself (or your friend blaming herself)...as we all suffer stress, and wouldn't we all control it if we could?  It's just part of life.  Your body will respond much more positively to compassion, than it will to self-blame. 

Keep us posted.  Take a deep breath.  There's nothing to forgive...This is exactly where to unload your stress about MD.  

I was watching TV tonight, and suddenly it sounded like a steamboat whistle honking in my right ear - It was so loud I couldn't hear anything else!  Right away, I tensed all up and my mind began filling itself with ideas that another attack of vertigo might be imminent.  But for some reason, I was able to summon my more rational self, and just breathe deep and tell myself to relax, and "this too shall pass"...and it did.  I know it won't always pass, but I'm grateful for the times when it does. 

Take good care of both of you.  Be good to yourselves...I know it's not easy, but try to accept MD and that it's unpredictable.  Keep your rescue meds handy at all times!

Best of luck to you both.  Please keep us updated!!!!

J-

Hi Debbie

Thank you for your kind words and support. It really does help to have someone who understands, even though I am coming at this from the viewpoint of a friend rather than experiencing it myself. It’s the unpredictability that I find so hard to deal with.

I am sorry that you still have balance problems, hearing loss and tinnitus. Tinnitus is so debilitating and hearing loss is a condition that doesn’t always get the understanding that it deserves; people aren’t always patient.

By the way, the mirror trick still helped. Once she started throwing up nothing stops that until it’s over! But it took the worst of the vertigo off. So thank you again for that.

Regarding the diuretic, she does have  a prescription for occasional use for another health problem. Among her many ailments, she has CVI (chronic venous insufficiency) and if her ankles swell too much she can take for a day or two. Thanks for the suggestion -  it’s one of the things she will ask about when she goes to her appointment.  So good to have some useful input and know some questions to ask when we get there.  I can’t help wondering if there is a connections between the CVI and what is happening with her ears.

Thanks again. Misti

Hi J

Thanks for your reply. These messages really do help; it makes me feel slightly less alone in this. Yes, it is the unpredictability that is so worrying. She has had a lot to deal with in her life, including PTSD from a horribly abusive childhood and losing a lot of her sight, but this seems just too much.  I don’t deal well with feeling helpless and never knowing when it might hit. I feel so bad for her – she is wretched when it hits -  and I want to give her all the support that I can, but I also feel guilty that there is a little part of me that resents this, and how much it changes everything. I don’t like admitting that. She is a good kind person and has had so much pain in her life already.

I admire your attitude of acceptance, hope and gratitude for the good days. I expect it took a lot of work to reach that state of mind. It can’t have been easy.

If I can ask, and please don’t reply if you would rather not think about it too much,  but how did you cope when an attack hit when you were away from home and not near your car. It’s only happened once so far to my friend and it was horrible. What helps if you can’t lie down? Do any of the rescue meds work quickly in this situation?

She has started carrying a fairly large pocket mirror since reading Debbie’s tip and I have one on me too. I can just imagine what it would look like in public  -  a staggering drunk looking woman staring at herself in a mirror!

You asked about steroid injections. They are mentioned on an NHS (National Health Service) website but it seems to be controversial in this country as many doctors appear to doubt the effectiveness. There is a similar disagreement with Betahistine , which is prescribed in this country but not in the US I think. Her GP prescribed Betahistine but I think she will not get any other meds until she sees a specialist in December. We pushed a bit to get an appointment at a London hospital which has a balance clinic rather than just a local ENT department.

My friend read your reply and she particularly liked this comment “Your body will respond much more positively to compassion, than it will to self-blame.” You are right that if you try too hard to control stress it can feel like a “failure” when an attack hits.

I’m sorry that you still have other Meniere’s symptoms, even though you are, hopefully, free of the vertigo. Tinnitus is an exhausting and maddening symptom. A steamboat whistle like sound just as you were relaxing must have seemed like a huge shock. This is a dreadful disease and most people know nothing about it. I am hoping a real cure or effective control will be found soon. I am embarrassed to admit that, although I had heard of MD, I thought people just felt a little dizzy with it. I was clueless.

Thanks again.  Misti.

Hi Misti,  Sorry to take so long to respond.  For the past few days, I have been trying to get onto this site, but the page kept crashing.  Not sure why.  Sigh.

I'm soooo glad that the mirror trick works!  Amazing!  Neurological stuff is so complex....how cool to find a simple strategy that works.

You mentioned that once the vomiting stars, all bets are off.  That's exactly the way it is with me.  I take my rescue meds as soom as soon as I  feel even the faintest bit of that weirdness coming on, and I always take the anti-nausea pill first.  I know your friend hasn't been fully worked up yet, but can you get something for motion sickness, over the counter?  Over here, that would be Dramamine.  It might help to pop one or two as soon as she begins to have symptoms (I just chew all of my meds - makes them work faster) and oculd possibly stave off the nausea and vomiting, calm her down a bit, and reduce the intensity of the episode.....It's worth a try.  For me, the nausea and vomiting seem to just keep it all going for so much longer. The key for me, is early intervention. I stopped thinking that I could "wait it out" or "will it away"...I never could, because you simply can't!  It's a disease - there's a very real physical process going on that can't be wished or willed away.     

I think it's great that she went on the low salt diet.  That really does help a lot.

With regard to the diuretics:  What's typically prescribed for MD is a potassium sparing diuretic and it's meant to be used everyday, and over the long term.  Over here, the standard drug is a Triamterene/Hydrochlorothiazide combo.  Diuretics that are prescribed to take as needed for a couple of days at a time (like furosamide), work differently, and shouldn't be used for MD - If used without prescription potassium supplements, they can quickly deplete the body of potassium, and that can cause pretty serious problems.  

RE: the CVI and what's happening in her ears.  That's a great question for her doctor.  I'd love to hear what he says.  I understand that keeping fluid balance is critical...and that the inner ear doesn't "self correct" as fast as the rest of the body....But why is that some people can compensate and we can't?  My doctor tells me that the bottom line is inflammation in the inner ear, but that no one knows exactly what causes that inflammation in the first place.  So that's why steroid injections work for vertigo:  They reduce inflammation in the inner ear, and thus the labyrinthitis/vertigo component of MD.  But they don't eliminate the ear fullness, the tinnitus, or the hearing loss. So there must be more to MD than simply inner ear inflammation? Arrrgh!  I don't know.....I feel like I've got pieces of the puzzle, but hardly the entire picture!

I hope both of you take good care.  And definitely keep us up to date with what's going on.  

J-

Hi Misti,

RE: "how did you cope when an attack hit when you were away from home and not near your car. It’s only happened once so far to my friend and it was horrible. What helps if you can’t lie down? Do any of the rescue meds work quickly in this situation?"

Well, because my first eipisode in that situation was such a nightmare, I now wear an emergency pendant called a GreatCall, when I'm going out by myself.  It's like a tiny cell phone/GPS the size of a box of TicTacs, with a singe button on it.  If i push the button, someone from the call center gets right back to me and calls the EMTs if I need them (and anyone else I've put on the list).  They have my entire history on the computer in front of them, so that they can tell it to the Energency Responders:  The fact that I have Meniere's, exactly what an attack looks like, what I can and can't do, the medications I need, etc...   It's $19.95/month, but I'd rather have that than cable TV, and know that I'm not going to be mistaken for a woman who's weaving, falling down drunk and throwing up, and have people just walk around me!  Now that I've been without the vertigo for a couple of months I probably should discontinue it, but I'm still just not ready.  It's given me the courage to wander much farther from home, and I would hate to be far from home and caught unaware.  

The first time I got caught unprepared, was a true nightmare.  And I know to this day that my neighbors throught I was drinking!  I had fallen, and was lying in a pool of vomit, unable to see or speak.  A neighbor called 911.  The EMTs  kept yelling questions at me, and I was unable to hear what they were saying, and I couldn't  respond.; Every sound and movement just made me throw up more.  I was completely helpless.  It was a VERY bad scene.  I was taken to the hospital, and admitted.  They gave me anti-vertigo meds via IV,  and it took me 3 days to be able to walk again, and that was with a walker.  I'd never had it as severely as that, and I was totally unprepared.  There was no time for me to have done anything different.  I can't recall any warning signs; Just one minute walking, and the next, not knowing where my body was in space, falling, and vomiting...so sick I wanted to die. 

Several months later,  I was leaving a doctor's appointment and crossing the hospital lobby.  I started to feel like I was walking on a rocking boat, and managed to reach a row of chairs, take my rescue meds, and lie down across a few of the chairs.  Nobody bothered me (or offered help!)  It took nearly 2 hours before I was good enough to drive home....but I managed to get home safely.

After that first, really bad attack, I rarely left the house, (until my steroid injections began to kick in,) which is probably why most of my episodes have happened at home.  In PT, I learned that once the vertigo starts, to immediately lower myself to the ground because, as she so aptly put it: "That's where you're going to end up anyway!"  So, that's what I've always done.  I always have rescue meds in my pocket, so I take them right away.   If I can crawl to my bed or the couch...that's what I do. 

As I experienced more and more episodes, I began to recognize more and more early warning signs:  Like maybe just a bit of dizziness.  Or, the stairs felt "spongy", or I was stumbling.....I began to realize that there was always something, that preceded the vertigo...It's just that I hadn't been paying attention.  So, now I'm convinced that for me, the way to avoid a full blown episode with vomiting, is to take the meds as soom as I feel anything "odd".  It will still take a couple of hours to resolve, followed by a "hangover"....but it's more manageable if I can prevent the vomiting. 

If I didn't have the GreatCall, and it happened to me while I was out in public, I'd lower myself to the ground and if I were able to speak, I'd say "call 911".  It's the only way to get people to realize that you're really sick.  But really, if your friend is going to go out alone during this crisis period, and can't afford a call button, then a MedicAlert pendant or bracelet, or even an index card with Meniere's Information, easily accessible, tucked into her purse, might be a good idea.  

I know you two are going through a really rough time right now, and I wish I could be of more help, but all I can do is share my experience. 

Wishing you both the very best of luck in getting the help you need, in order to make this thing more manageable.

J-  

Hi J – I will make a couple of posts as there is a lot to say in reply.

The mirror trick  -  it doesn’t stop the vertigo but it takes the edge off a bit and steadies her just a little so that she just feels as if she is going to fall over rather than actually falling over! The first time she tried it the effect was stronger but it has helped each time.

I just made an appointment for her with her GP in case he will prescribe some anti nausea and potassium sparing diuretics in advance of her December hospital appointment.  She had another attack a few days ago when we were in a store -  only the second time we were not at home -  fortunately no vomiting. It was pretty distressing but luckily the shop was near a taxi rank so, with help from staff whom I ran to get, we were able to get in a taxi and then home, and to bed.  She just had another one this morning and is in bed sleeping it off. I had to leave her to come home for something. The attacks seem to be more frequent. Though that did happen before and then she went 4 weeks without one.

When you say it’s a real disease I find myself wondering if anyone made you feel it was all in your mind or something like that.  I hope not.

I didn’t know that the inner ear takes longer to recover it’s fluid balance than the rest of the body. She does in fact take furosamide now and again for the leg swelling and , when she took one some weeks ago, got an attack the next day.  I did wonder if there was a connection and that now makes sense. It probably took her water levels down a lot and then her body tried to rebalance itself the next day but the inner ear did not keep pace? I don’t know but it makes some sense.  I didn’t know about the potassium sparing diuretics until I read about it on this site. I am learning a lot.

I don’t know why some people can manage the fluid balance thing and MD sufferers can’t but I did read that some people have a genetic malformation of the inner ear that makes MD more likely. There again not everyone with MD has the malformation and not everyone with it get the MD. I hope that made sense; it was English when it left my brain but sometimes words have an accident on the way out.

As you say, so multi faceted and frustrating if you are trying to understand it all.

I am trying to research and ask questions, and find out all I can. I have found there is a link to obesity and diabetes.  Also allergies can make the symptoms worse. This summer some described the situation in England as “pollen Armageddon” and with the air pollution in London being so bad, perhaps that was a contributory factor for my friend. Or maybe it would have happened anyway........ I so want to understand and “fix” this for her. I am not good at helpless.

Regarding your attacks away from home  -  my lord that sounds awful J. I thought my friend’s attacks were horrible but clearly it could be a lot worse. I am sincerely sorry that you had to experience that. I suppose it was good that you were left in peace to recover on the hospital chairs but surely someone could have asked if you were ok.

I am so glad that the steroid injections have given you relief from the vertigo, even though you still have other symptoms. Inflammation seems to be at the root of so many diseases researchers are finding  - even cancer and strokes, as well the obvious things like arthritis or rhinitis. I have been looking into whether there really is such a thing as an anti-inflammatory diet, rather than just claims to sell a book.

My friend is visually impaired and already lost most of the hearing in one ear years ago ( nothing to do with MD). Fortunately the already bad ear is the one affected by this. So, she does not go out alone. I am always with her. She does live alone though so I don’t know if she would be interested in a medic alert button. She could not afford the private scheme ( if it exists here). When this started she moved in with me so I could be there if needed but she had to move back last week as I am having extensive work done here. I didn’t want it but have no choice. She will move back when it’s done. It’s too disruptive for someone who is registered blind to cope with.

She does not really get any warning. Perhaps a sudden increase in tinnitus but the vertigo starts within second so not much use for getting to a seat if we are out. I am hoping that this is a sort of “cluster” of attacks and that hopefully she will get at least a few good weeks again.

It really does help talking to people here and learning from their experiences. I will definitely update on this thread when she has her appointment. The diagnostic process might be of interest or use to someone else who is waiting for a hospital appointment. It would be great if I could do something useful rather than always ask others here for information. 

RE: "I so want to understand and “fix” this for her. I am not good at helpless."  

Oh, I so completely get that!  I'm SO not good at helpless, either!  I'm so happy that you've joined this forum!

J- 

Hi Misti,

I've lost 3 posts that I wrote this morning....I think the website is telling me to "shut up"!  (and I will!)  I have so much to say about what you've written above, but now my time has run out, and I have to do "life stuff" while the sun is still shining!

Until next time, I want to say that I for one, would be very interested in reading about the diagnostic process your friend will be going through in December.  And, I'm quite sure there are many others on the website who would be interetsted as well.  My own process felt so disjointed.  Perhaps it's because I was so completely unprepared.  I had absolutely no idea what was happening, anr/or what questions to ask.  Also, very little was explained in the early stages.  I remember the CT Scan, throwing up during the whole BPPV test, and feeling very  frightened and out of control.  I think it's fantastic that your friend has you there, and that you will be armed with questions and knowledge and hopefully be able to help her go through the process in an organized, non-traumatic fashion!

BTW, I'm in a bit of a rush right now, and I can't remember if I mentioned it, but I think booking an appointment with your friend's GP is a great idea!  I'm sure s/sh would know enough about Meniere's to be able to prescribe a good anti-emetic and perhaps a diuretic to hold her over until the hospital appointment.  Sorry if I'm repeating myself...As I said, I've lost so many posts.  I hit "Reply" and they disappear!  Sigh.

Off to do get some work done.  Hoping you both are doing well on this very stressful Election Day in the U.S.!!!!!

J-

I'm glad I joined too; I've learned a lot and received a lot of support, especially from you and Debbie.

We were all rather shocked here that you now have Donald Trump for president. Hope I have not offended any of his supporters here and I will say no more as it's way off subject!