Nov 5,2001 to Jan 14, 2002
looking for a diagnosis Karen 10:24 am monday november 5, 2001
I have listened to my pulse in my L ear for several years now.
It usually happened before my period and would last for 2 weeks,
24 hours a day. It is annoying to listen to ones pulse all
day. No pain, no vertigo, no nausea...just the pulse. I have
had CAT scans, MRI, medical attention and no answer. I read in
the nutrition book that Meniere's Dis. responds to manganese. I
have taken it daily now for 2 months and do not have the
pulsing. If I miss a day, I hear the pulse. The MDs that I ask
about this say they are not familiar with this. Has anyone else
experienced this phenomenon?
re: How to get diagnosis Suzanne
8:27 pm tuesday november 6, 2001
In December of 1996 I woke up and was so dizzy I could hardly
stand up. I remember thinking I had the flu or something on that
order. I didn't go to work that day and called my doctor. After
seeing him he suggested I see an "Otolaryngology" specialist. I
saw her and after 20 minutes of testing in her office, she
diagnosed me with Meniers and gave me three prescriptions. One
for mild vertigo - called Antivert (similar to sea sickness
pills); one for severe vertigo - Valium and Dyazide. This
WORKED. Sometimes it would last a day, sometimes a couple of
hours but the pills would make it go away. She also suggested I
eat foods containing potassium (bananas and ?), avoid stress,
stay off salt and drink lots of water. I have learned to live
with the ringing in my ears which is not so bad now. I had
episodes at least 5 to 6 times a year; I haven't had one for 2
years and now I just had one but because I'm under a LOT of
stress at work. I hope this helps.
re: meniers and stress gayle
2:44 pm sunday november 18, 2001
Sara,
I was recently diagnosed with Meniers and would say that I have a
stressful lifestyle. I would be interested in participating in
your survey.
Gayle
no anwsers yet Linda 11:53 pm sunday november 18, 2001
I have seen two ENTs and two neurologist and all of them I have
been told it is hard to say what is going on with me. My first
ENT said he could not find anything wrong. Test he did for
meniere`s or the ones that should make you dizzy did not show
anything at the time of testing. They did take a hearing test
then, that was three months ago, everything seamed to be in
normal ranges. I kept on my family doctor about this and he sent
me to another ENT two weeks ago. They took another hearing test
again and they compaired it to my first one it showed that I
have lost half of my hearing. I would like to know if hearing
goes this fast with meniere`s? Every moring I will wake up
extremely dizzy having to hold on to thing to keep from falling.
This will last 30 minutes to a hour. It will fade away over that
time. Thoughout the day I will, what I will call, space out. I
have to ask myself what I was doing to get my mind back on my
work. I have ring in my ears most of the day. In the last three
weeks I have noticed I am having to ask people to repeat what
they said. I work in customer service and anwser phones all day.
I have two volumes on the phone. I have one up all the way and
the second one up 3/4 of the way up. I don`t know how much
longer I will be able to do that kind of work. I do not know
where to turn to next. Only the first neurologist said he
thought I may have meniere`s. I find my self in depressed state
more and more. Please give me some of your ideas on how you deal
with this. The only way I have found is to get myself into
church activities. I`m need more to keep me going.
???? Frank 0:48 am tuesday november 20, 2001
Hi, I am not sure why I am writing. Thought maby talking about
this would help me in some way, I guess. My history. I am a 47
year old male. 4years ago I had kidney failure. Come to find out
it was caused by HEP C. Well, i`ll cut this short. I have
chronic renal insuficentcy, high blood pressure, cirrhosis of
the liver, and now I have the big M. I have had my right ear
treated with (sp) gentomiasen? It has stopped the brain tornados
and most of the vomiting and sweating, but I still have "dizzy
spells". I was told that this was about as good as it would get.
I do take antivert and valium. I also take Levothroid,
minoxidil, cardura, atenolol, bicitra, and three times a week I
inject 1.5mills of interferon. My kidney doc won`t let me take
any herbs, she says she does`nt know how they will react with
all the other drugs I take. Between the Big M and the really BAD
side effects of interferon, I have had problems with the age old
question of "to be, or not to be". I WILL NOT LET IT GET ME.
During all of this, 3 years, I have learned what really counts,
frinds and relatives... I have found out that I am really lucky.
I can`t work, lost my insurance, have filed for disabilty- still
pending. I have friends who have paid my bills, A friend gave me
this computer, another friend gave me a old car so no more bus
rides to the doctors. I have learned to look at things with
adifferant light, a differant slant. I am still depressed a lot,
still sick a lot, but F it. I will not let it screw-up what time
I have left!!! Sorry for going on and on. I guess what I`m
trying to say is that this is still a fantistic world. My cup is
NOT half empty, IT`S HALF FULL. I will do my best to keep it
that way. where there is no hope there is still faith.. Thanks
to Greg for allowing me to express myself.
My problem Tammi
7:11 pm tuesday november 20, 2001
Hi, I have know about my menieres ear for about four long years
now. About four months ago I had surgery to drain the fluid from
my ear. The dizziness and other syptoms disappeared for about
three months but now they have come back omsfull strength. What
are my options now. This disorder is literly driving me
crazy.
meniers Deborah Garcia
6:09 pm wednesday november 21, 2001
I found out my aunt (my moms sister) has meniers disease.
So could you please email me with this info
I get so busy that I forget to check back.
Deborah
re: is it really Meniere's? Deborah
10:46 pm friday november 23, 2001
This sounds very much like the symptoms I had. I fought for
years not to take the drugs but finally gave in when I realized
it was drugs and work or no drugs and stay at home. I take
minimal valium - 1mg twice a day and I take Zyrtec which is a
long acting antihistamine instead of the short acting meclazine.
I find I have almost no symptoms if I take the drugs. I wish I
would have started sooner. Find an ENT who listens to you and is
willing to work with you. Try several if you have to. Good luck.
Deborah
meniers and memory loss Dan Thompson
7:47 pm monday november 26, 2001
I have had meniers for apx. 30 years. Last month the left ear
went. Lots of noise now. This time I lost lots of memory. I seem
to be getting pieces back as time goes on. Is this common?
Thanks Dan Thompson
re: no anwsers yet John Meredith
8:02 am tuesday november 27, 2001
Hi Linda
dont feel alone I also have seen an ENT who sais I have
perfect hearing and then proceeded to tell me how late he was
running that day and my dizzeniss may be a figment of my
amagiation.Would you suggest I see a neurolagist?
telephones Mark Bremer
12:42 pm friday november 30, 2001
As we Menier's sufferers know, we do not have "typical" hearing
loss. Loosing our low frequency first, vs. the high frequencies.
Does anyone know of a good wireless phone with lots of
amplification that does not have a high-frequency boost?
Walker makes regular phones where this is an option, but their
cordless phones have an automatic boost to high frequencies.
I need the phone for work so I don't have to run back to my
office every time I get a call.
re: no anwsers yet Linda 3:01 am sunday december 2, 2001
Hi John,
I`m glad you anwsered my message. I went to a ENT then to a
neurologist and then to another neurologist then another ENT. I
just got a call back from the second ENT yesterday. He told me
that it all looks like I do have Meniere`s. I asked if I could
have a test done to see if I may have autoimmune where my immune
system is doing the damage. I have lost what I would say half of
my hearing in only 3 months, most of that has been in the last
month. I can not hear anyone whisper or hear people talk from
more then 10-12 feet, the words all seam to form together. I
think it would be best to find help that takes you sincerely. A
doctor that has no time for you, you should not have the time for
him either. There are many others out there. You may want to
start with your family doctor to see if he /she would have somone
in mind to be referred. How long have you had this dizziness?
When does it affect you the most? I am very new with all of this
myself but I do find it helpful to learn as much as you can. Do
alot of reading and talk keep talking to doctors. I get down on
myself at time and find it hard to keep on going, but I have a
wonderful family and a 2 year old granddaughter to help me. They
give me a good support through it all. I also look to God and I
know he would not give me more then I can`t handle. I close for
now with keep on looking until you are happy with the doctor that
will take the time to listen to you and that will help you.
inner ear pressure Brenda 2:35 pm monday december 3, 2001
My son is 15 and has suffered with inner ear fluid in his left
ear for years. The pressure at times becomes very painful for
him especially coming down from high altitudes. He has seen a
doctor who is afraid that tubes may make his problem more
painful. He has also seen a naturopathic doctor who tried
accupuncture and candling. Which helped the problem temporarily.
Is there anyone out there who might know more information so
that I can help him? Or anyone who is living with this kind of
situation? Thank you.
re: inner ear pressure Greg
2:44 pm monday december 3, 2001
Brenda,
When you say inner ear fluid, do you mean fluid in his middle ear? There is a condition called perilymphatic fistula, that he might be checked for. In this situation, fluid from the inner ear is leaked into the middle ear, causing lots of problems. I believe it can be surgically fixed, if that is the case. It would be best to see an otologist or neuro-otologist.
Greg
Inner Voice of Meniere's
weather and vertigo jeana harmon
11:04 am wednesday december 5, 2001
I have been living with a vestibular disorder for about 5 yrs.
Thats what they call it because the doctors couldn't agree, on Meniers.
I have been lucky, because I get times of relief that last for months.
Lately I have been misable, pressure in my ears, spinning, headaches, off balance.
I seem to get worse when the weather is changing, usually damp cold days.
Am I crazy? or has anyone else experienced this? When I say this, people laugh at me.
Sometimes I have a fear that these symptoms will stay and I won't ever have relief again.
re: inner ear pressure Brenda
4:16 pm wednesday december 5, 2001
Greg,
Thanks for your response. Yes, I do mean fluid in his middle ear. Going from high altitudes down to lower altitudes makes it very painful for him. His hearing in his left ear is not as good as his right. The doctor said that to us it would sound as if we had a cold and our ears were plugged up. He can hear normal talking but some tones he can't hear. Do you know if by surgically fixing the problem it involves tubes placed in the eardrums? The doctor had thought that by blowing or maturing it would open up the eustachian tubes but he has been playing the trumpet for 4 years and no change. Thank you very much for your helpful information. I am going to research perilymphatic fistula. Brenda
re: weather and vertigo Dan Thompson
10:56 am friday december 7, 2001
You are not nuts, weather has an affect. Change in altitude also
has an affect. I don't have a clue as to what to do. Can't just
sit. I hope are feeling better. Dan T.
re: weather and vertigo Rick
1:36 pm tuesday december 11, 2001
I'm not sure why weather changes affect MM but I think it does. I
know that food allergies cause a lot of my problems and I've been
able to control 90% of my vertigo attacks with diet and
antihistamines but a lot of my problems in the past were on the
day after a cold front came through. I used to think it was
barometric change but I can fly on airplanes and the increase and
decrease in cabin pressure have never affected me. One possiblity
is that the change in wind direction could cause different
allergens to be in the air than what is normal. It could be
temperature related. I think is demonstrated by the ENG test
which will cause vertigo by maniputating the temperature inside
the ear. I know one time last year I went outside for awhile with
my left ear towards a 20MPH wind. When I went inside I had a
small vertigo attack and I believe it was caused by the
temperature differance.
Rick
menieres Joe Nicholson
2:02 pm sunday december 16, 2001
I've had menieres since I was 30 years old and am now 47. The
last couple of years has been just small "spiners" as I call
them. I used to get laid up for weeks at a time around 3 to 4
times a year. I just found out at work that they are bumping me
back to a lower paying job, bypassing people with less time then
me. Does anybody know if menieres is under the American
Disabilities Act? If you do please e-mail me at my e-mail adress.Chop1954@aol.com
Than you.
Blood tests RufusG
3:58 pm sunday december 16, 2001
Here is a site to check:
www.goldbaum.net/balance
Andrew Goldbaum went through many tests with many specialists as we all have. He finally found from a special blood test that there was a major imbalance in his histamine level - it was way too high.
Since many of us find that Anti-histamines seem to help this may be very relevant.
Drastic diet changes - which he documents very well - have helped for him.
Well worth reading his web site.
Regards
If it is only blocked ears and nose RufusG
4:07 pm sunday december 16, 2001
Here is a site to check: www.ent-consult.com
This is from a board-certified doctor ( Dr Murray Grossan ) who has developed natural solutions for sinus problems.
Claims to work for blocked passages for Divers and Airline Pilots.
I have tried his saline nasal spray ( Breath-ease ) and it works well for me.
Regards
soothing-sound machines webo
3:08 pm monday december 17, 2001
I was diagnosed with Meniere's four years ago. At that time, I
had a constant ringing in my left ear, along with dizziness and
a full feeling. Nothing I did had any impact: ginkgo, St. Johns
Wort, microcurrent therapy, magnetic field therapy, acupuncture,
Chinese herbs, chiropracty. I can live with the left ear. The
problem now is that my right ear is filled with a crunching
sound, like someone is walking on the top of crusty snow. I am
having a very hard time falling asleep. I've heard of machines
that provide sounds -- whether it's water flowing over rocks, or
some other sort of noise -- to drown out the crunching sound and
provide a more soothing atmosphere. Anyone have any
recommendations? You can e-mail me at webodespo@yahoo.com
re: weather and vertigo gail 4:17 pm sunday december 23, 2001
I know the feeling. I was diagonosed 1 year ago with otosclosis
and meniers. While I been fortune to experience mild systems, I
find that this time of year gets bad. I feel constantly off
balance and experiance very minor bouts of spinning vertigo. It
just stinks when you feel like you are going to fall over all the
time.
I am going to start going to a diatician in a couple of week to try and get my diet down to 500m daily. so far the best I can do is about 1200m.
Its funny though, through spring and summer I felt great. As soon as winter comes, life goes into a tizzy.
I look foward to talking to you.
Gail
(no subject) gail 7:09 pm sunday december 23, 2001
Hi there
I was diagnosed with otosclorsis about 1 year ago. A few months after that I began becomming dizzy and off balance. I went back to my doctor and he diagnosed me with the beginning stages of meniers.
I am fortunate that I only have minor bouts of vertigo. However it get really frustating always feeling off balance and having trouble concentrating. I am also afraid that one day the vertigo will get worse.
I am just looking to chat with people who deal with this. My family is very supportive, but if you don't know what that feeling is it is hard to understand.
I begin seeing a diatician in a couple of weeks. I need help getting my sodium down to 500m a day. Not having much luck.
Does anyone have any good coping techniques, or give me info on how you deal with this. Sometimes I don't want to get up becuase I don't feel like dealing with it.
thanks
re: (no subject) webo
12:43 pm wednesday december 26, 2001
Gail,
I know the feeling. I'm having a lot of trouble dealing with
the new crunching sound in my right ear, to go along with major
ringing in the left.
I really haven't found anything -- a drug, herb, exercise,
diet, etc. -- that has really worked. The only that has really
helped me is my acceptance of the Lord into my life. I'm not
going to turn this into a sermon, because I don't know where you
are at in your life. But I wouldn't want to speculate about where
I'd be if I hadn't accepted Him. I do get easily irritated and
lose concentration because of all the noise in my ears,
particularly when there is a lot of background noise, but reading
the Bible and focusing on His Word has truly helped me.
I will continue to look for Meniere's treatments. I wish you
all the best.
This fullness in my ear is hard to deal vicki
3:07 pm friday december 28, 2001
Hi!
I'm new on this site but I'm so glad that I have found it! My
Doctor is now testing me for menieres and everything that I have
read ...BINGO!!! I have such fullness in my left ear and I can
tell when it is going to pop! It's just like being in an
airplaine forever! I can't wait to go to bed so I don't have to
keep turning my head to people and saying WHAT? And at work I
keep thinking that I hear the fire alarm go off! (There is no
fire except between mu ears). I'm always confused (maybe because
I can't hear anything but my own breath most of the time)
But the most painful part of this is the fact that I love to
sing . I am trying to make a CD and I also sing alot in church.
Right now I am known as the singer that can only sing in my
barefeet(if only they knew that the singer feels much more
grounded with her feet on the ground) But does any one have any
sugestions as to what I can do when my ear pops? I can't hear my
music and I can't tell if I am on key!!! HELP!!!!
re: This fullness in my ear is hard to d gail 8:48 pm friday december 28, 2001
Hi Vicki,
I know what you mean about the fullness. Sometimes I find myself shaking me head trying to get the bubble to pop. I am tired of telling people to only talk into my right ear. I'm not ready for a hearing aid yet, but may have to go to one.
I find that I am speaking louder these days (or so people tell me). I have a job that requires me to do alot of phone work. I don't know how many times I put the phone on my bad year and can't hear anyone.
I was recently dianosed also (about 1 year ago). My Meniers is triggered by a condition otosclorsis. Do you have the ringing also? That is annoying, especially at night.
However after reading messages from this sight, I realize how fortunate I am. I don't experience spinning vertigo. I only have bouts of off balance and dizziness.
I have found that when I follow my low sodium diet (approx 500m to 1000m) a day and take my diuretic that I do notice the fullness lessens. This is not easy to do. I am going to start seeing a diatician. The only way I can get my sodium that low on my own is eating rice and water.
I wish you well.
I have enjoyed this sight. When I feel down, I just ready the messages and then you don't feel so alone and I again realize just how lucky I am.
re: (no subject) gail 8:52 pm friday december 28, 2001
Webo,
Thanks for the kind words. Yes I to believe in the Lord and
thank him everyday that I have something that is not terminal and
however uncofortable does not cause me any pain.
My family is a great support, but until you deal with this, its hard to explain.
I to am watching diet etc. I do find that it does help.
I wish you well with yours.
And like all illness, someday someone will find a cure.
Thanks
Hey Gail...Talk about Brain Fog!!!! vicki
10:32 am saturday december 29, 2001
Gail,
I just thought that I would send your note right back to
you....just in case you wanted to read it again! DAH!(Sorry)
Anyway...No I don't have ringing...I have PINGING!!! It's
really been rough around the Holidays! Everything on the radio
has it's Christmas Ping to the song anyway so this year I heard
ping...ping....ping... The only thing that I could think of was
Rickachet Rabbit! (That was when I could hear the out side noise)
How do you do in the malls and shopping areas? I'm starting to
think that people I talk to think that I am on drugs! I know
that sometimes I have a really wild eye look on my face! I kinda
panic and I don't want to talk.(Fight and Flight)
Oh this has been such a blessing! Actually talking with people
that understand! People at work don't get it! (And I work in a
Hospital) They just don't take the time to understand. Everyone
is to busy. And my Boyfreind(which I live with) also dosen't
take the time to understand.
Thanks for allowing me to VENT!!!
Vicki
loss of vision jeana harmon
11:56 am saturday december 29, 2001
I have had a vestibular disorder, or meniers for about 5 yrs.
I had the strangest thing happen yesterday. I have been having symptoms for about a month,
sometimes I go months without symptoms. I was having fullness in my ears, and lightheaded.
Then my vision got blurred and I totally lost sight in my right eye, for a few seconds.
It was like a white cloud over my eye. Of course I was scared! I was tested for a stroke
with an ultrasound and ekg. Everything was normal. Has anyone out there experienced anything
simular to this? Please e-mail me!
re: Hey Gail...Talk about Brain Fog!!!! gail 6:58 pm saturday december 29, 2001 Vicki,
I to appreciate having someone to talk to. My husband and kids
are great, but they just don't get it sometimes.
Brain fog, not fun. I do carry some meclizine in case I need it.
It doesn't do very much. You feel that when your walking
sometimes you must look like you are drunk. I do have trouble
sometimes walking a straight line. I try to joke about it at
work but I do find it hard to work sometimes when my mind is
keeping focused on not falling out of my chair.
I do customer service work and am always on the phone.
I asked my doctor about the brain fog. I feel as if I can't
focus and I'm drugged up. He said its just where the pressure is
being applied to in my inner ear.
I to suffer panic attackes. I'm not as fond as going to the mall
as I used to me. On the recomendation of me doctor, I am seeing
a therapist to learn some coping techniques. This is helping.
Basically its deep breathing and some calming exercises for when
I am out alone and start to feel dizzy. My condition isn't as
bad a others, but even if you have a mild case, it still can be
scary.
Hopefully you won't get the ringing. I have learned to live with
it, but sometimes I wish it would stop for a few minutes.
Please feel free to e-mail and vent whenever. It does help to
have someone to talk to.
Gail
Could I have Meniere's Jim 1:33 am sunday december 30, 2001
I am 31 years old and have been suffering with inner ear
problems since May 95. I still remember my first attack, sudden
ringing in my left ear, feeling disoriented, flushed face,
dropped me to my knees. My symptoms include fullness in my
ears, sudden ringing, sudden deafness, light-headedness, "drop
attacks", and clicking in my ears when I swallow or move my
jaw. I have had problems with flouresent lights. The problems
started in just one ear but now both of my ears experience
problems. About one year after my symptoms started I found that
when I get a sudden attack (usually loud ringing, pain/pressure,
or deafness) in one of my ears I can open my jaw wide until my
ear pops. When it pops the pressure is relieved and/or the
ringing stops and I can hear fluid inside my inner ear when I
move my jaw. The sudden attacks are usually followed by light-
headedness (feel disoriented) and sometimes panic
attacks/anxiety. When my ears pop (by opening my jaw) it is
loud enough that other people can hear it (it sounds like a
stick breaking to me). I have been to two ENTs, an allergy
clinic, and a hearing clinic. I've had a Cat Scan, hearing
tests, and an allergy test. The doctors tell me that I'm
suffering from allergies that cause my estation tube between my
ear and throat to plug. The last ENT I went to (8 months ago)
said it was either allergies or TMJ (my symtoms do not match TMJ
symptoms). I have been on Rhinocort, Nasonex, Clariton, Zertec
and now Flonase to treat my symptoms. The medications have not
helped me and I still suffer from these symptoms daily. My
family and friends think its all in my head. My fiance and mom
even got me books for Christmas that are about dealing with
stress and healing with the mind. I have lived with this for
over six years now and it has progressively gotton worse. I
used to get an attack once a month but now it's almost daily.
The anxiety/panic attacks are rare (mabye twice a year) but I
think thats because I have been dealing with this for so long
that I'm used to it. When I found this website and started
reading about Menieres symptoms I thought it could be possible
that I have it. I am not convinced that allergies are causing
my problems.
I appologize for this being so long. Any comments or advice is
appreciated.
Thank you!
earplugs! ">vicki
6:12 am sunday december 30, 2001
I bought my first pair of earplugs! It was on my list ...so I
DID remember to get them. The lights at the so were driving me
crazy! Anyway when I got home I stuck one of thos buggers in my
left ear.PING! But only my ping.I think that I could concentrate
better on othet things that I had to do .But I did have to cut
them down to size! Gosh!!they must make them for someone the
size of Schreck! I'll have to talk to my Dr. about this! But for
now..I think I will keep trying them. Anything to keep my mind
on what I am doing! And only hearing my own private noise
instead of all of the other noises around me was rather nice.
I go for my ABR next week!!! What happens after that?
re: Could I have Meniere's Greg
11:05 am sunday december 30, 2001
Jim,
I suffered with similar problems (except for the ear popping) for years. Meniere's can wear the mask of many different illnesses.
The only doctor that ever helped me, was a neurotologist. They specialize in ear/brain disorders. Since the inner ear is connected to the brain stem, it can trigger many different symptoms.
I am no doctor, but I think the panic/anxiety attacks are triggered by the lightheadedness from inner ear dizziness. The brain tells you that something is very wrong, but you (or most doctors)have no idea as to what, so your body sort of goes into a "fight or flight" situation, and you want to just take off running, or scream for help.
One thing that helped me for a while and still does sometimes, is a low dose of niacin (vitamin B3). It acts as a vascular dilator and increases circualtion to the head and inner ear. If you decide to try it, email me first, at gf899@hotmail.com and I can tell you a little more details about the niacin therapy.
It is not all in your head, Jim. To most, it seems like an invisible disorder, but it is very real to those of us that experience it.
no subject) julie
9:32 pm sunday december 30, 2001
i have heard that surgery can make it worsr. i too have meniers
disease and 1 take 3 meclazine 12.5 mil. daily, i am dizzy daily
and notice meclazine helps
(no subject) Vonda Floyd
1:45 am tuesday january 1, 2002
Hello,
This is my first time to this site. I read some of the messages
and they all sound like me. I have had hearing problems all my
life, but the past year has really bad. I worked as a customer
service supervisor for a major communications company. Now I
don't work at all. I have been trying to learn new skills to
enable me to return to work, my family really needs the money.
The loss of my salary and my med bills have really changed our
lives. I have lost all of my hearing in one ear and about 50%
in the other. My hearing in that ear goes up and down, so does
the fullness in my ears. This week it has really been severe.
I wish I could just stop the pressure and pain. I am writing
this now because I can't sleep and was too sick to go out for
New Year's eve. You would think if we could send things into
space we could find a way to cure all these diseases. Meniere's
is just such a bother! I am sorry this is so long, it's New
Years Eve and I just need to vent. I go back to the Doc on
Thurs, but I feel that I am just pouring more money down the
drain. The other day I was so embarrassed, I vowed never to go
shopping by myself again. I was in the restroom of a department
store, when they had a fire alarm go off and I did not hear it.
I was the only person in the store when I came out. The firemen
asked me why I didn't leave when I head the alarm. I just
wanted to crawl into a hole and die!!! I hope nothing like this
ever happens to any of you. I am usually not so down, but your
site just seemed like a place where someone would understand. I
wish all a Happy and Symptom free New Year.
Thanks for the space to vent!!
re: (no subject) vicki 8:41 am tuesday january 1, 2002
Don't feel bad about Venting! That's why everyone is here! Join
the club! So far I have found alot of confort in talking to other
people that are goning through this crap!
It is very difficult! The sounds in my ear is a ping(which sounds
like the fire alarm system at work....so you guessed it! I keep
going to find out where the fire is! Just imagine ...if we worked
in the same place we would have quite a laugh.I'd be yelling fire
all of the time and you would be yelling right back WHAT!!!
Just keep trying to find some humor! Easier said than done.(I
know)
Have a Happy New Year and keep loging on. I think that we are one
big happy family! Plus we can read it! We just can't always hear.
So at least here we have the upper hand!
Vick
Meniere's chat Greg 7:52 pm tuesday january 1, 2002
Greetings All,
I have had several requests for chat sessions in my chat room. Please let me know what would be a good time and day to schedule regular chats and I will do my best to be there.
Also let me know what time zone you are in, as I am in Eastern Time. For example, someone in California would need to be at a 9pm chat at 6 pm. :)
I also wish to extend a New Years greeting to everyone, and thank you all for your participation and contributions.
Sincerely,
Greg Folsom
Inner Voice of Meniere's
https://www.angelfire.com/fl/maxcomf/
Sister who has menieres Jan
0:59 am wednesday january 2, 2002
I have been on the menieres sites for the last 10 hours(took
time out to have a quick bite)trying to get some information for
my sister. I will write tomorrow and give more details on her
condition. It's 2am and I have to work tomorrow. I find this
site very interesting. Happy New Year everyone!!!!!
Jan
re: Sister who has menieres vicki 8:27 am wednesday january 2, 2002
Jan,
You have a very lucky sister! You must love her alot! Sounds
like she is going to have alot of support from you(which she is
going to need)
Bless You
Vicki
Back again Vonda
11:14 am wednesday january 2, 2002
Well I am back again. It's is really sad to know that finally
finding people who have the same problems I do, make me feel
better. I have had Meniere's for years and always felt that I
was just lazy or crazy. When you finally think that you have lost
eerything you find something worth more than you had. When I
wrote my first entry New Year's eve, I was having a really bad
time. I have a chronic sinus infection, which makes everything
worse, my ear doc was out of town, and my family doc won't do
anything and the thought of starting another year like last was
just too much. This site is great, I wish I could send a virtual
hug to everyone. Since I would like to get to know everyone, let
me tell you a little about me. I am a 45 year old mother and
grandmother. I have no hearing in one ear and very little left in
my left ear. Last year was when most of my hearing left. Before
that is was just bad in my right, dizzyness, ringing, and
pressure. I was at work one day and got sick to my stomach, went
to the bathroom, got dizzy and fell and hit my head on the sink,
passed out, it was over an hour before anyone found me. After
that my hearing got alot worse, dizzyness increased and so did
depression. When I came back to work, they had try to find ways
that I could continue to work, because of the American with
Disabilities Act. I was moved to a corner, I couldn't hear the
voice's on the phones so they got me huge head phones, that had
ear covers like ear muffs, and no one wanted to come near me.
Things went from bad to worse and I was in the hospital for a
while. After I got out I just couldn't face going back. It's
been a little over a year now that I left work. Hearing,
friends, self-esteem, car, money, all gone. I now stay home,
spend 95% of my time by myself, talk mostly to a dog, and dream
every day about trying to find something I can do to get some
kind of life back. Everytime I get close to trying to go back to
work, "sick again"!!!!!! My husband is tired and stressed out.
He is good and understanding to me, but it is hard to see things
you've worked for go down the drain. Now the good news, I am
learning sign language, starting to look for things to help my
self esteem, like this site, and hoping I can just look for the
good days. Happy New Year to all.
Thanks Vonda :) Greg 11:45 am wednesday january 2, 2002
" I have had Meniere's for years and always felt that I was just lazy or crazy.
When you finally think that you have lost everything..... you find something worth more than
you had."
Vonda, those words should be where everyone can see them. I am going to put them on my main page and at my thoughts page.
When doors are closed to us, windows of opportunity open. They are hard to find and sometimes may even be disguised as misfortune. I know because I have found them also.
Thanks,
Greg
Inner Voice of Meniere's
Vinpocetine Carrie
1:31 pm wednesday january 2, 2002
Late last August I started taking vinpocetine for my MM.
Vinpocetine has apparently been used for many years in Europe
for the treatment of MM. It is a derivative of the periwinkle
plant, so it’s within the herb family. As I took vinpocetine I
saw my MM symptoms become less severe. I was just about ready to
write this message at the end of October when I caught a cold
and had a slight setback in improvement. I continued, though, to
take the vinpocetine. As I write this today, my symptoms of MM
have improved tremendously. I have minimal fullness and
pressure, my ringing has improved, brain fog is gone and my
hearing seems to have improved tremendously. I still have some
flectuation in hearing, but nothing like it was 4 months ago. Is
it the vinpocetine that is helping me, or am I in a 'good
spell'? I’m thinking it’s the vinpocetine. My thoughts come as
the result of being without vinpocetine for 13 days. The company
from whom I ordered my supply of vinpocetine messed my order up.
The first 4 days were good, then each day I experienced more MM
symptoms return. By the time I finally received a supply I was
experiencing every symptom, even dizziness, a symptom that I had
never before had too much trouble with. After 7 days of
returning to taking the vinpocetine, I have the improvement I
spoke of earlier. After 3 weeks of taking 30 – 40 mg daily I’m
back to just a humming in my left ear (the original ear affected
by MM). I also keep my sodium intake to under 1000 mg daily.
As I mentioned earlier vinpocetine is in the herb family. I also
take dyazide and I’ve have not experienced interactions between
the two. The only side effect I’ve had with vinpocetine has been
a dry mouth. That is all. Most of the information you’ll read
will indicate it’s for memory loss, dementia, etc. It’s humorous
to note that they refer to it as the brain viagra; it increases
blood flow. I could tell you more about vinpocetine, but below
I’ve supplied web sites with information for you to begin to
make your own decision. It’s worth noting that since vinpocetine
is an herb, it does take time to get into your system and begin
working. I would suggest a month or two. I hope it works for
everyone as well as it has for me.
I will continue to investigate any information on vinpocetine I
can find. Right now I’m concerned about long term use. But I can
say my quality of life has improved tremendously.
While the web sites below may be advertisements for purchasing
vinpocetine I’m only sending them to you for you to see that
this herb is known to help hearing/inner ear problems. I am not
sending these sites to you for you to order products, only for
information purposes. Please be aware that some of the suppliers
add caffeine to their pills. I couldn’t handle the caffeine, and
caffeine and MM are a bad mixture. If you have questions about
dosage or about ordering from the different companies, please
feel free to contact me. I’ve had some good experiences in
ordering and some very bad experiences.
Here is just a start of some of the web sites that will provide
you with information about vinpocetine. I urge you to
investigate further by surfing around.
http://www.smart-drugs.com/article-JamesSouth-vinpocetine.htm
http://www.raysahelian.com/vinpocetine.html
http://www.clubnatural.com/whatisvin.html
http://www.vinpocetine.net/articles.htm
http://www.life-enhancement.com/displayart.asp?ID=470
re: Back again gail 6:47 pm wednesday january 2, 2002
Hi Vonda,
My name is Gail and I was diagnosed with meniers about 1 year ago.
I am 42 have 2 kids.
I just recently starting on this site. Everytime I read notes
here I realize just how lucky I am. My symtoms stem from ringing
in my left ear, a lot of pressure in that ear, about a 40%
hearing reduction and of course dizzy and lightheadedness.
I am in customer service and use my right ear all the time,
unless of course someone starts yelling than I put them on the
ear I can't hear well out of.
I was diagnosed with otoscloris which would be operable had the
inner ear started. Now one is feeding off of the other.
I'm sorry to hear that you are so bad off. Hopefully in the near
future they will come up with a cure for this. My husband is
very supportive, but sometimes he just doesn't understard how
frustrating it is.
I have started seeing a therapist to help me work throught the
bad days with breathing and self hypnosis. I find it very
comforting to see her. She had done reading on this disorder and
offers support and symphany when I need it. She is helping me
cope and giving me great coping techniques. They don't make the
problem go away, but they do help make going through it easier.
Gail
Just Wanted to Drop by vonda
9:48 pm saturday january 5, 2002
Silly me went to doctor hoping there was something he could do
for the pain and pressure in my ear. He just increased dyazide
and is sending me for tests for my sinsus and inner ear to see
if he needs to operate to clean out my sinus. Gave new
prescription for pain. My life is such a joke. Guess I need
to work on a comedy routine. I think I'll call it "EAR TODAY
GONE TOMORROW". To keep from being so depressed today, I made a
t-shirt with the TOP TEN REASONS TO LEARN SIGN LANGUAGE. Here
are the reasons I put on it. I hope this doesn't hurt anyone's
feelings the only way I can cope is to laugh at myself.!!!!
1. You can talk and chew gum at the same time.
2. You don't have to worry about singing on key when you sign.
3. You can talk with your mouth full.
4. You can yell at your kids in a store and no one cares.
5. You can talk to your boyfriend from your bedroom window, and
your mom won't hear.
6. You don't have to worry about what to do with your hands at
public affairs.
7. You can save paper in class by signing instead of passing
notes behind the professor's back.
8. You don't have to whisper in church.
9.Teach it to your grandkids so they can aggrivate their parents
by answering in sign when they get in trouble.
10.You can talk across a crowded room at parties.
Does anyone have MSN Messenger? That way I could chat with you
in real time.
re: Could I have Meniere's Ann
11:11 am monday january 7, 2002
Hi! I'm a first time visitor to this site, and what a joy to find
it. I have been suffering from Menier's for about 12 years. At
first, it was just that my right ear seemed "full" and I kept
trying to find something in there that was plugging it up. The
next thing I noticed happened one day when I was walking down the
street with my cousin and we were just chatting. I noticed that
as long as I kept my eyes straight ahead, I was able to manuver
just fine, but when I turned my head to say something, I would
veer off course. The tinitus started next. For me, that took on
a waterfall sound in my left ear that is persistant and constant
to this day. It has robbed me of about 60% of my hearing and
just drives me nuts. One day I was sitting in a chair and
suddenly it seemed that some one had taken the chair and given it
a huge shake. The room began to spin at an alarming rate and my
eyes (I was told later) were moving back and forth very rapidly.
Very soon I knew I was going to vomit, but I couldn't walk. I
crawled to the bath room where I vomited for about 4 hours; after
which I fell asleep (yes, I had to crawl to my bed) and slept for
6 hours. I had an attack at work one day. I was a surveillance
observer and worked alone. Pretty much the same thing happened
again, only this time the extreem dizzyness was accompanied by
immediate and projectile vomiting......all over my work
station..so embarrassing. Again, I fell assleep for a prolonged
period of time. Another episode did not involve vomiting, thank
God, but I did have a dizzy spell that was so extreem that I had
to stop in my tracks and lean against a building. I heard
someone passing by say, "I think she's drunk." This was very
stressful to me. I am 65 years old (at the time I was about 56
or 57) and I don't go out in public in a drunken state. I'm
learning that eliminating salt does help and caffine is probably
a good thing to give up, too. I have never been a big coffee
drinker, so I am not so sure about that. I have always enjoyed
salt, though, so I am struggling with that a bit. I'm wondering
if Gotu Kola and Ginko Biloba would help. I read another letter
saying that increased circulation to the brain is helpful. Has
anyone had any experience with either of those herbs? I read
once that it is suspected that Vincent Van Gogh suffered from
Menier's and that's what drove him mad and induced him to cut off
his own ear. Can anyone else relate to that? I tend to get
pretty "down" from time to time myself. Well, thaks for letting
me run my mouth. It is nice to be saying these things to people
who understand what the heck I'm talking about!
More on my ear problems Linda 9:12 pm monday january 7, 2002
I am still having problems with my ears. My newest one is not
being able to sleep in my bed. I will wake up very dizzy and not
able to do anything for at least two hours. I now sleep on the
couch with three pillows to raise my head. Sleeping this way I
at least wake with a clear head. I`ve been do this for three
weeks and the problem doing this is my husband, he thinks I
don`t want to sleep with him. He sees that sleeping on the couch
does help me but this is weighting heavy on our relationship. I
have an appointment to see the sixth doctor about my ears but
that isn`t until Feb. Is there anyone one else that has this
problem, if so what do you do? My ears will pop and tick as I
breath, drink, and talk. I know I have some fluid on them. Yes I
will be seeing the sixth doctor on my ears. They all seam to be
afraid to do anything. I will see a doctor only one or two times
and they will pass me over to another one. The one I will see
specializes in Otology, Neurotology, and Skull Base Surgery. I
only hope he can do something for me but still if anyone has any
sugestions on what else I can do other then staying on the couch
please let me know!!!
re: More on my ear problems vicki 9:49 am tuesday january 8, 2002
Linda,
I think as far as Drs go you are finally heading in the right
direction now! All of your symptoms sound really familiar to me.
And trust me I do understand how it is driving a wedge between
you and your husband! I also have problems with my friends and
family. They don't understand how frustrating it is for me also!
I did not choose to have hearing problems but could you at least
look at me when you talk...PLEASE!!!!
I am going today to visit my Dr(he is a specializes in ears.
nose and throat) He has really been agressive in trying to help
me. For 6 years I had gone to different Drs and they told me that
nothing was wrong. So chew gum when your ears become clogged and
take an antihisimine when it gets bad.(which was every day!) So
hang is there . Your not nuts!
Anyway back to the bedroom(if I may be so bold) Did you know
that they make a wedge type pillow for the bed? Check around at
your local Pharmacy's for help in finding one.Or check on the
internet. Maybe this will help you and your husbands frustation.
Good Luck
Vicki
Humming in ear, not sure if it's Meniers Nancy
11:05 pm tuesday january 8, 2002
Sometimes it starts off with a fullness in my one ear. Then it
either goes away or is followed by a humming noice. Not a
buzzing or ringing. It's very annoying. If I'm moving around or
have the tv or radio on I don't notice it. And this usually
lasts for 2-3 days.
I saw a ENT when this first began 2 yrs. ago. At that time I had
a blocked ear with dizziness that lasted a short time. He said I
had Meniers. Gave me a water pill which did nothing for me.
I don't notice a hearing loss like others here have. Rather,
many times I have to hold the phone away from my ear. Seems like
peoples voices are too loud.
When I'm at a place with loud music I often will have the
humming noise occur. However, I've had the annoying humming the
last 2 days and was not around any loud noises. Any ideas?
Should I see another ENT for a 2nd opinion?
Thanks!
dizzy spells Tami 6:37 pm thursday january 10, 2002
HI, just new to this so Ihave lots of questions.Other than the
dizzy spells it feel's like my head is always dropping,Iwas
wondering if this is normal.I have fullnes in my ears some of
the time but mainly very dizzy more so in the evening.I feel
like my head and ears and eyes are all working against one
another. My Dr. perscribed a water pill,does this help?Could
someone please help me with these questions,I afraid of what's
going on with my body, I'm driving everyone nuts with questions
they can't answer. Thank You.
re: dizzy spells carrie
3:53 pm friday january 11, 2002
Hi Tami. If you do have MM then the water pills will help. Along
with taking Diazide, I have changed my lifestyle drastically. I
stay under 1000mg of sodium daily, drink plenty of water, no
caffiene, no aspartame, minimal sugar, minimal alcohol, take a
multivitamin, exercise almost every day. BUT, I believe the thing
that has helped me the most is taking the herb, Vinpocetine. If
you look back a couple of days I posted a note about it. I
realize that everyone should do what they feel is best for them
and their needs, but I highly recommend Vinpocetine. Best of luck
to you.
New here...What's up? Chase
4:11 pm friday january 11, 2002
Well this is it huh??? An actual site on the internet where you
can talk to other people that know your not crazy??? Cool. I just
heard of this Meniers...Although I have suffered for from "Dizzy
spells" my whole life...I just figured..live with it...no one
knew what the heck it was...Sooo that's what I have been doing
living with it...Trying to do some research..I see alot of you
have the Meniers lingo down...I'm learning...Later Chase
Eustation Tube Dysfunction Rick
11:59 am saturday january 12, 2002
My Meniere's and Tinnitus seemed to have started with my
Eustasion Tube dysfuntion of which I still have 20 years later.
Did anybody else's problems start the same way?
Rick
re: dizzy spells gail 5:53 pm saturday january 12, 2002
Hi Tami,
Know how you are feeling. My dizziness happens in the evenings also. It seem as soon as I relax at the end of the day, that when I feel the dizziness. I also have fullness. I am on a water pill. I dont' real notice a difference when on this. Have a tried a low sodium diet? This with the water pill does help. My doctor has me on 1000mg daily. I have kept a chart as to when the dizziness and fullness are worst. Stress seems to be my main factor.
I know what you mean about the eyes and ears and head. I told my husband I wish someone could take my head and give me a knew one. I find my eyes have trouble focusing at times. I think I am trying so hard to keep my balance that my eyes roam.
I haven't found anything yet that works totally.
Do your ears ring also and have you noticed any hearing loss?
I hope this helps a little.
Good luck
re: dizzy spells gail 7:39 pm sunday january 13, 2002
Hi Carrie,
I see that you are staying under 1000mg of sodium a day. What
foods are you eating? I am also trying to get under 1000mg. I
do good for awhile but find it hard to stick with. I find that
before dinner I am almost up to my limit.
I do not eat prepared foods and don't use salt. I would
appreciate and suggestions you could supply. I am also going to
pick up some Vinpocetine. I'm getting tired for the dizzy spells
and the brain fog.
Thanks for any help you can supply.
gail
re: dizzy spells Carrie 2:07 pm monday january 14, 2002
Hi Gail.
You are right it's not easy staying under 1000mg of sodium. I eat
basic things, nothing at all processed. I think that when I first
started on my quest of 1000mgs or less I spent alot of time in
the grocery store looking at labels. I would pick up something
that sounded good, but if the sodium content was high, then it
just didn't sound good any more, knowing what it would do to my
ears. It's amazing how much will power my ears have given me. I
have adjusted my lifestyle around my ears determining that they
are one of the most important things in my life. For breakfast I
have brown rice with raisins and milk or eggs with some fruit.
Breakfast cereals have alot of sodium/sugar. I think that sugar
also promotes water retention. Basic meats, fresh veges and fruit
the rest of the day. If you like beans, take and rinse a can of
beans and mix them with a can of no sodium tomatoes, other veges
and spices. Spices have been a savior for me. I stay away from
butter/marj, salad dressings, and all of the condiments as they
are really high in sodium. Balsamic vinegar is good on salads.
Swiss cheese if very low in sodium compared to other cheeses, if
you are a cheese freak like I was. I do like BBQ sauce and you
will find that the different varieties vary on sodium content.
Breads seem to have alot of sodium, so I find myself not really
missing bread at every meal. For a sweet treat I really like Lite
Cool Whip added to anything or even by itself. It has NO sodium.
Try it with lite canned peaches...yum. NOW for the good news.
For quite awhile (maybe 3-4 months) I followed 500 mgs a day and
now I follow 1000 mgs a day, BUT there are times when I really
blow it and it doesn't seem to bother me. I think that if you get
your body operating in a low sodium mode you can blow it once in
awhile. I do find now that the cheese I use to crave and want
daily is so salty that it doesn't taste good anymore. It takes
awhile to adjust...as with anything in our lives.
I feel the vinpocetine has helped me out tremendously and hope
that it will do the same for you if you try it. I started out by
taking 10 mgs a day then worked up to the 30 mgs a day. I take
10mgs three times a day. I read somewhere to take it with food
because it is absorbed better with food in your small intestine.
Most of the companies are pretty good, but don't order from
Intellectol. I had so much trouble with that company! I FEEL THE
MOST IMPORTANT THING TO REMEMBER IF YOU TRY VINPOCETINE IS TO
GIVE IT A COUPLE OF MONTHS, POSSIBLY THREE, BEFORE YOU DECIDE IF
IT'S WORKING.
I hope I've helped you. Keep me posted. Hang in there.
Carrie
i need help -- soothing-sound machines?? webo
3:10 pm monday january 14, 2002
I was diagnosed with Meniere's four years ago. At that time, I
had a constant ringing in my left ear, along with dizziness and
a full feeling. Nothing I did had any impact: ginkgo, St. Johns
Wort, microcurrent therapy, magnetic field therapy, acupuncture,
Chinese herbs, chiropracty. I can live with the left ear. The
problem now is that my right ear is filled with a crunching
sound, like someone is walking on the top of crusty snow. On top
of that, I woke up Sunday and everything sounded different. Very
tinny. Like I was listening to a robot. There has been some
hearing loss, for sure.
I am having a very hard time falling asleep. I've heard of
machines that provide sounds -- whether it's water flowing over
rocks, or some other sort of noise -- to drown out the crunching
sound and provide a more soothing atmosphere. Anyone have any
recommendations? Also, does anyone know of a specialist in
Houston. I have not pursued any medical help since I moved here.
Please e-mail me at webodespo@yahoo.com
Gail Carrie Tami 5:30 pm monday january 14, 2002
Thank You for the reply.I'm having a hard time adjusting to my
newfound dizzines.I saw my family Dr today he has refered me to
yet another nerologist.My CT scan was clear but can't pin down
the dizzines. My feet always feel like the floor is moving,my
head always feels like it is buzzing and i'm always dizzy.I'm
finding it hard to get used to as I have little kids I still
have to be a great mom to. My husband is supportive but I'm sure
I'm driving him nuts!Is your spells worse at night and do you
get white flashes of light? As for the herb(vinpocetine) I'm
from Canada and am not sure if it is appovved or even
avaliable.I'll have to check it out.The water pills not sure if
I can take them my BP is low allready and my Dr.wants to see
what neroligist has to say.I't is a waiting game. Does my
symptoms sound like yours? let me know if you have a chance.
this is the only place I seem to get any answers. Look forward
to hearing from you!
Tami
re: Gail Carrie gail 7:19 pm monday january 14, 2002
Hi Tami,
Yes my syptoms are worse at night. I do work full time and it seems as soon as I come home and relax, then I start feeling dizzy. I do get dizzy spells during the day, but I think sometimes I am so busy, I ignore them.
It is very frustrating. I hate that feeling of the floor moving. It happens to me when I am washing dishes. Or if I am at a red light, I feel as if the car is shifting sideways.
I have found this sight to be very helpful. It's nice to talk to people who do understand. I am fortunate that my girls are older, they do help alot. I must be difficult with small children. I try to take one of them with me if I go to the store. I find that when I'm out like that I feel very lightheaded. I feel more comfortable knowing someone is with me.
I to have low blood pressure. I take the water pill and go every six months to have my blood pressure taken and my blood count taken.
I am still looking for some kind of pattern or something that works. Try keeping a chart. I keep track daily of things that seem to trigger the dizziness. I am finding that stress and tiredness seem to trigger it the most.
Have you experienced "Brain Fog" yet. I get that quite alot. It feels as if you can't focus and your brain is in a fog.
I guess the fortunate thing is, it can't kill you and unless the pressure in my ear is strong, I have no pain. So I try and focus on that and not let it get to me to much.
I look foward to hearing from you again.
Gail
Gail Tami 10:52 pm monday january 14, 2002
Thank-you for the reply. It is so nice to finally feel like I'm
not crazy! I also become very dizzy wile doing dishes or at the
store.I on the other hand hate to take my kids shopping my
stress level goes way up. My symptoms are extreme dizziness,my
head always feels like it is working in overload,my rt ear
hurts,and my head feels like it drops.As for ringing it comes
and goes I have alot of pressure. I just feel lousy.I sometimes
feel like I not really there, is this "Brain Fog"? I Don't work
so my only distraction is my boy's. They make me smile alot.Do
you take anything called Bonnimine? I'm not sure if it is
available in the states. Since I'm from Canada, I'm not sure If
you can get it. here you can get it over the counter at the drug
store it helps a little bit.Serc also slightly helped me but it
is by percription. I hope to hear from you again it does help to
know other peoples symptoms as I'm afraid sometimes that what is
going on with my head.Four months ago I felt normal then this
hit.Thank-you for taking the time to reasure me that my symptoms
are normal .
Tami
Previous Page
Archive Page Index
Back to my Home Page
My Meniere's info links page
Go to Greg's Meniere's Discussion Group
What is Meniere's Page
Psychic Spirits
