Austen Fan...meniere's and fibro??

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vestabula
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   Posted 11/24/2008 6:06 PM (GMT -7)   
Hi..I see that you also suffer from Meniere's along with fibro, as do I.  I am probably alot older than you...62...and was diagnosed before the days of MRI's.  My test was done by shooting air and hot water through my ear canals with a high pressure hose, then spinning me around in a chair and measuring how long it took for my eyes to stop spinning around in their sockets.  I never finished the test because I passed out. I am in a fibro flare right now and notice I have had more attacks than usual...sometimes I go months without one.  Do you see any correlation between the two disorders?  Do you take anything that prevents the attacks?  I stay away from salt, MSG, etc.
 
Since I am new, I didn't know how else to reach you except through the general forum.  I had a horrible meniere's attack today and my eyes are still trying to adjust!
 
donna

Chutz
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   Posted 11/24/2008 10:45 PM (GMT -7)   
pssss <whispering so no one will hear> when you answer someone if you will click on the Post Reply button at the bottom of the topic/page, or just use the Quick Reply box then it will stay with that topic. You started a New Topic so it's hard to tell who you're replying to. ;-)

any time I can help you please feel free to ask. we all had to learn how to operate this place when we were new.
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AustenFan
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Date Joined Aug 2008
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   Posted 11/25/2008 3:54 AM (GMT -7)   

Hi Donna.  I was diagnosed with Meniere's about 7 years ago, and I've had Fibro for at least 8 years, probably more.  I also had the lovely water in the ear squirt test, had a horrible panic attack, and made them stop. smilewinkgrin   I had a bunch of other tests for Meniere's too, but none of them were nearly as horrible.

I do believe there is a connection.  I have several illnesses that "no one knows what causes it," but I think they are all somehow autoimmune related.

I'm in a pretty bad fibro flare right now too, and I've been waking up in the middle of the night (strange) with vertigo. I have gotten to the point with my Meniere's that I am having more balance problems (due to nerve damage) than actual vertigo.

When my vertigo was at its worst (and I say that as if it is in the past, knock on wood), I was taking HCTZ (a diuretic), and Valium and Benadryl every night before bed.  A lot of people just use Valium during an attack, but I found it helped to take it prophylactically at night.  But, if you want to try Valium and Benadryl together, you should probably ask your doctor first.  Technically, they aren't supposed to be taken together.

I did watch salt intake pretty closely at first, but it didn't seem to make much of a difference for me.

Another thing I do is try really hard to avoid visual triggers: striped wall paper, flashing lights, flickering candles, looking up (or down), long rows of bookshelves (weird, I know), etc.  This has helped me a lot.

I hope you feel better soon.  I know how miserable it can be. cry

Hugs - Austen

 


"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


vestabula
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Date Joined Nov 2008
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   Posted 11/25/2008 5:36 AM (GMT -7)   

Thanks, Austen.  I have valium for the Meniere's but I have discovered there is nothing that helps once the attack is raging.  I took a valium yesterday and just slept through the whole nightmare.  When diagnosed, they prescribed anti-vert, but was told to take it three times a day to prevent the attack.  That's fine, if you have no life and are committed to sleeping all day and never want to drive again.  Yeah...and let's not forget the hearing loss and the whistling in the ears.  Hubby bought me one of those phones that is supposed to amplify sound but I still can't hear most conversations and have to keep telling people to repeat themselves a dozen times.

Sorry you suffer from this too...I hear there are two new treatments...antibiotic implant and something that involves drilling a hole through the mastoid bone and lacing a tube into the ear canal.  Owwy!

Take care,

donna


MaggieLou
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Date Joined Apr 2008
Total Posts : 31
   Posted 11/25/2008 7:26 AM (GMT -7)   
I hope is't ok to join in on your conversation.  I also have fribro and meniere's.  I have also had Crohn's Disease since 1972. 
 
In 1998, I had a severe meniere's attack and was in the hospital for a week.  My doctor referred me to UVA at Charlottesville, VA.  In 1999, I had a shunt placed in my right ear.  Since that time, I have not had any major attacks, but have some small ones occasionally.  For those I take antivert and phenergan for the nausea.  I still have a loss of balance, some dizziness and ringing in my right ear.  I also stay away from stripes, watching anything moving, etc.  Sometime it is difficult to drive.
 
Susie
Susie
CD since 1972 (three bowel resections), Fibromyalgia, Inflamatory Arthritis, Degenerative Disc Disease, High Blood Pressure, Depression, Acid Reflux
Humira since 04/07 for CD, Prozac, Diovan, Cardizem, B12 Inj., Prevacid, and Lortab and Ambien as needed for Fibro
 


vestabula
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Date Joined Nov 2008
Total Posts : 2855
   Posted 11/25/2008 8:48 AM (GMT -7)   

Hi Susie...glad you joined in.  I think I have heard of the shunt-thing and it sounds promising.  At the moment, I don't have health insurance as we were dropped when moving out of state.  I guess I have to wait three more years before I'm on Meidcare to have any kind of treatment!  I hope I'm not totally deaf my then!

 

donna


AustenFan
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Date Joined Aug 2008
Total Posts : 1771
   Posted 11/25/2008 8:50 AM (GMT -7)   
Donna,  I've had to stay away from most of the Meniere's meds too.  Same as you, I couldn't function and live my life.  I had the same trouble with Lyrica for fibro.  My husband has a co-worker who just went through inner ear injections of Gentamicin (antibiotic).  I'm not sure how he is doing, but I know that is an option.
 
Susie, most of the time I don't have trouble driving, but I do stay away from the interstate/highways.  Something about the cars whizzing by so quickly really messes with me.  I think that is pretty common in Meniere's patients.  I mostly drive in town (not very fast :-) ), and I do okay.
 
Just FYI, there is a Meniere's forum at www.Menieres.org.  It isn't quite as gentle and this forum, but you can get a lot of good info. about treatments and coping techniques there.
 
Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


vestabula
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Date Joined Nov 2008
Total Posts : 2855
   Posted 11/25/2008 9:14 AM (GMT -7)   

I looked through a kaliediscope(sp?) in a museum once and got the worst attack...right there, right then.  I don't know why things like that trigger Meniere's as I was told is was fluid build up in the ears from eating salt, etc.  I ate a amall piece of barbequed ham at a picnic and spent the next three days in bed...couldn't even move my eyes.  Back when I was dx'd, it was called a syndrome and remained on the list of 'orpahn disorders' up until recently, which means research for a cure was just about nil.  Just like fibro...is it real, or imaginary???!

 

donna


AustenFan
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Date Joined Aug 2008
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   Posted 11/25/2008 10:47 AM (GMT -7)   
Well, since I'm losing the hearing in my affected ear, I vote for real.  smilewinkgrin
 
My understanding is that Meniere's damages the balance part of the inner ear.  According to my doc, you depend on your ears, eyes, and body/trunk for balance.  When one is damaged (inner ear), your brain depends on input from the other two.  Because the brain really needs accurate input from all three sources, problems with one or more can cause vertigo and/or balance issues.
 
When the inner ear "swells" during an attack, your brain gets mixed up messages and produces vertigo.  If the inner ear is already damaged, your brain will freak out when your eyes send mixed up messages such as striped wallpaper, flashing lights, etc. I think the same thing can happen with the "body" part of balance regulation (like if you are walking on uneven pavement, or a moving sidewalk at an airport). At least that is how I understand it in my rudimentary, non-physician way. wink
 
Between the Fibro, Meniere's, and all of the other health issues I have, I'm just grateful that I'm able to get up and get going most days.  yeah
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


vestabula
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Date Joined Nov 2008
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   Posted 11/25/2008 1:25 PM (GMT -7)   

hey Austen...mine is bi-lateral which I understand is very rare.  At different points in my life, I have been so bad I have actually considered having my ear drums removed, thinking complete deafness would be better than spinning all the time.  I was wondering if you can fly (on airplanes)?  I can't...no way.  When the plane rises and the cabin pressurizes, I feel like I'm falling into a pit.  Then I start throwing up until we land.  Dramamine and all motion sickness drugs are useless...doc says it has nothing to do with the motion...it's my ears and eyes not co-operating with each other.  I have to sit in the front seat of a car, or see the horizon if in a boat.  I'd love to be able to fly to visit grandchildren, etc.  Once I got off a plane and was deaf.  Maybe I have been misinformed, but I was told as the scilia(spelling...those little hairs that transmit sound) die off after every attack, the attacks will lessen because in essence, deafness is the cure.  I haven't found that to be true.

It's a riddle within a riddle within a riddle!  We have a friend who is an airline pilot and has Meniere's and swears the ginger root prevents his attacks.  I know that has worked for me for motion sickness...maybe I'll start taking that everyday!

donna


AustenFan
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Date Joined Aug 2008
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   Posted 11/25/2008 2:57 PM (GMT -7)   
I did fly a couple of years ago but was miserable the whole time.  I also have to sit in the front seat of the car, can't ride in boat, and can't ride amusement rides. mad
 
I haven't heard of ginger root; I'll have to give it a try.
 
 
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


vestabula
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Date Joined Nov 2008
Total Posts : 2855
   Posted 11/27/2008 5:35 AM (GMT -7)   
Hey Austen and Susie and the rest of you with Menieres and Fibro...Happy, happy Thanksgiving.  Just a gentle reminder to not eat any turkey that has been injected with '10% nitrate and broth solution to enhance flavor'...no boxed stuffing, no canned gravy, that green bean casserole with the french fried onion rings and canned mushroom soup in it...Oh, you get what I mean.  But have a wonderful day with your families anyway, that 's the most important thing, but stay away from anything that says it contains 'autilized yeast protein'!  Yipes! 
 
donna

Sherrine
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Date Joined Apr 2005
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   Posted 11/27/2008 9:37 AM (GMT -7)   
Too bad you ladies can't come to my home for Thanksgiving.  I only cook fresh stuff and have none of that.  I even make my own cubed bread for my dressing.  Have a wonderful, and delicioius, holiday!
 
Sherrine
Forum Moderator/ Fibromyalgia
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Irish Babe
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Date Joined May 2007
Total Posts : 1371
   Posted 11/27/2008 1:32 PM (GMT -7)   

I have had some weird symptoms for yrs and as I look at this post I have started to wonder if I have Meniere's. I have never been in a plane, but bus rides are horrible (class trips w/ 25 children, and you're nauseous), boat rides w/ soon to be in-laws ( and you're in captain's bunk sick as a dog), amusement rides ( you don't want to hear the outcome of that adventure, trust me). I have to sit in front in car and yet that doesn't always help. I can't look at cross traffic as I sit at a light. I get so dizzy, I feel like I could pass out. Dappled sunlight makes me dizzy. The day I got married my two ears went out on me. I felt like I was in a tunnel under water. That sensation continued every day for the next 3 yrs. I get it once in awhile now. I have changes in sound in my ears. One ear will hear a sound, then it seems to fade to other ear. My left ear is my better ear, if a noise is on that side and you talk to me on my right side, I can't hear you well enough to hear the words, just that you spoke. The sound of the fridge seems so loud and it blots other sounds or talking. It makes it hard to hear on the phone.

I have had this for yrs., my DM for the past several yrs. When I tried to explain it to her yrs ago, she didn't 'get it', now she does. Her drs. have no idea what it is. It sounds weird, because so many ppl here have it, some drs. must have recognized it to dx it.

My balance is so off, if I turn my head, the room can spin. It's as if the room goes dark and I grab for something, anything to keep from falling. I have a terrible time in elevators, my balance and ears are so messed up, as it drops, so does my stomach. Due to my knees, I can't take the stairs, so I'm stuck w/ elevators. Escalators make me feel like I'm pitching forward.

Hope everyone is having a lovely Thanksgiving, little pain, good food and lots of great memories.  God bless.  Alice.


vestabula
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Date Joined Nov 2008
Total Posts : 2855
   Posted 11/27/2008 2:55 PM (GMT -7)   

Hi Alice...don't know if you have Menieres or not...there are many inner ear conditions that cause dizziness.  With Menieres, the sensation is sustained vertigo that can last hours or days.  Ringing, buzzing and sometime a full feeling in the ear usually comes with it, along with nausea.  There is a condition called Benign Positional Vertigo that has the same symptoms but it is only a fleeting sensation...like when you turn your head real fast, or lay down...the room spins for a moment or two.  I have a very hard time driving when the sun is shining through trees that line the road, forming flashing slats of sunshine.  I feel like I am standing under a disco ball. 

Pretty sure you have something going on with your inner ear and maybe you should mention Menieres to an Ear Nose and Throat doc and see what he thinks.

donna

 

 

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