Site hosted by Angelfire.com: Build your free website today!

Greg's Discussion Group Archives
Page 7

May 18,2001 to Oct 17, 2001

If you have trouble loading this page click here


re: New to the board...about me. Debbie 7:49 pm sunday may 20, 2001
Now don't get mad but I KNOW HOW YOU FEEL. Its was June 8th,2000 at 6:20am, I was at work, and dropped a pencil, bent over to pick it up and WHAM!. I have not been in a dizzy free world since. I was sent for a drug test, it was negative...go figure. I was off work for 2 days before I could get in my car and go to the doctor...he said Debbie, you do not have an ear infection....well lets move this along more quickly, he told me after weeks that "it was all in my head", I got really P&^#ed off and walked out, he calls me at home that evening and sends me to an ENT....MRI, C-scan, balance testing, hearing test, ...no brain tumor (good for me), no sinus tumors (yaahhhhh), other test are boarder line normal (what the hell does that mean, border line?), loss of hearing in the right ear (DUH). Antivert, Meclizine, Dynex, Valium. I spent 5 months dizzy, can't drive, can't stand to ride in a car, so going to the doctor was miserable, the brain FOG...confusion is awful, feel so stupid. December 22, 2000, I get a letter from my employer, I am terminated, I have exceded my 180 medical leave...this mean no insurance. Which is ok, because I tapped out the 1500.00 per illness long ago, I now owe 5400.00 to the hospital, and ENT.

I have days that sharp nasty remarks come out of my mouth to my family, and I have no idea why I said it, but that is the way I feel, I want you people to take care of me.....no I don't really, I want to do the things I did before, I want to drive to the grocery store and buy what I want, I do not want to dread a trip when I am out of milk, I do no want to sit on the floor in the laundry room and cry when I find I am out of bleach, because I have to ask "another favor" of someone.
I do not want to have to explain to one more person that I can't promise you I will make 36 cup cakes and deliver them to the church for the party planned 6 weeks from now, because I and "sick"....and I do not know how I will feel then (oh but you don't look sick), and want this feeling of wanting to puke on someones shoes to go away. I watch the weather channel now, so I can avoid going out when the low pressure is going to arrive on Wednesday and I have to rush to get chores done so that I may have my "down day"., In short I want my like back. How about you? You see I do know how you feel. I really do.
Debbie Haynes
Indianapolis, Indiana


Just stumbled in here... Kathy 11:51 pm sunday may 20, 2001
Hello! I am writing to introduce myself and to ask a question! I am 44 years old and was diagnosed with Meniere's disease about 5 years ago. I think that that I suffered from it previous to that but not with the symptoms I've had in the last 5 or 6 years. One thing that has been happening, and I keep thinking I'm nuts, but I thought I would ask anyways!!! Sometimes when looking at things, whether it be the floor, wall, the grass or the sand on a beach, it kind of seems swirly to me, like its some kind of magical substance and moves around. Anyone else have this???? It is not the total substance of my sanity, but you never know! To continue on with my introduction...I'm married and have 3 step children, they're all on their own. My husband is very understanding and is beside me all the way. Wish other members of my family were that way. My mother thinks its all depression and doesn't understand. I've talked till I'm blue in the face, oh well, I guess it will sink in one day!

I am not able to work and I'm home all the time. Its not that anything has happened while driving, I just don't want anything too! I seem to have the most trouble from May to Septemeber. Although, anytime it wants to hit, it will! Last year I got fired from another job for missing so much work. No one seeems to understand what is going on and I pray that none of them have to experience it! I've lost several jobs due to Meniere's. I try to stay busy, but when the attack comes, its in control. I usually sleep alot and then have the dizziness to contend with. I'm taking 75 mgs. of Meclizine and right not its working, but then there are other times when it won't even touch it.
I've not got a lot to say, other than I'm glad I found this place and I'll be back when I can! I already have over 400 emails waiting for me cuz I've not been online for over 1 week! Till I return again! God speed and blessings to you all!
Love, Kathy


re: Meniere's ?? Bobbi 3:46 am thursday may 24, 2001
My opinion and I bet several others will agree, the snorkenling would bring on an attack. It's the change in ear pressure. We who have MM can testify that there can be long or short reprieves between spells and we don't always know what precipitates them.

Be blessed,
Bobbi


re: eye's hurt afterwards ?? Bobbi 3:53 am thursday may 24, 2001
Yep, my eyes hurt afterward and ususally a big ole headache! A sick to my stomach headache, as I call them. I haven't driven in years but since I am "some" better, I do take short drives just in our area.......(country, and there's very few cars). Don't take the chance of driving and hurting you and/or someone else if you have spontaneous attacks. It's not worth it. My spells have always come out of the blue, as I think most MM patients do. One minute I could be just fine and next, everything is spinning. Please be careful.

Be blessed and be balanced,
Bobbi


re: New to the board...about me. Bobbi 4:04 am thursday may 24, 2001

Oh Debbie, you said it all in a nutshell!! I couldn't have worded it any better............

Be blessed and be balanced,

Bobbi ......your Kentucky neighbor :) just outside of Louisville


AOL Instant Messenger Rick 4:24 pm friday may 25, 2001
How many are on AOL? My screen name is Rick1254 and you can add that to your buddy list if you like. If you don't have AOL go to their web site and download AOL instant messanger it's free and it's the easiest way to chat that I've found. Here's the link http://www.aol.com/ . I just thought it would be nice to chat if we see each other on line from time to time and you can turn off you instant messanger if you don't feel like chatting when you get online. In fact I usually keep mine off unless I have time to chat and then I turn it back on. Post your screen name here if you like or e-mail me with your screen name and I will add you to my buddy list.
Rick


Dizzy Me Jerry 6:23 pm sunday may 27, 2001
Hi,
This is my first message so you people don't know me! Yet! I have been having dizzy spells for a year now. My first spell was last summer, I was clinbing up a tree to trim some branches. I got about half way up and things started to spin. I got down OK, but couldn't walk very good. After I got in the house got to the phone and called the doctor. I was dizzy for three hours that time, and after the spell I went to my family Doctor and he gave it a name "Meniere's Disease". As I have had Tinnitus, and loss of hearing for about four or five years. Now as of last winter I have a dizzy spell about once a week, and when I'm not spinning I'm almost. My head only feel good if I'm laying down, but I have had a dizzy spell in the night too. "Can't win for lossing" My head is alway mess up now, I feel like it's just one big heavy ball of cotton that don't work right. And the headaches, earaches, and light headedness is getting on my bad side. My family doctor has send me two differnet ENT doctors. The first one gave me medication for the dizzy spells and some test, and said there was nothing more he could do for me. All my test come out OK. I go back to the 2nd doctor next month. I'm getting sick of walking around like a drunk, and I'm tried all the time. How is this for a dizzy message?
Jerry


re: Dizzy Me Rick 10:04 pm sunday may 27, 2001
Jerry,
you may want to do a little research since your new to all this. There's a lot of good info out there for Meniere's. One thing I want to share with you Is that 40% of Meniere's is caused by allergies, mostly food allergies and mainly to wheat. If you look through the archives on this board you'll see some posts that go into more detail that this.
Good Luck,
Rick


What is wrong? Elsa Torres 10:32 pm tuesday may 29, 2001
Hi,
I started having this terrible dizziness and nausea at the same time. What really scares me is that the dizziness lasts for about 30 minutes and than I feel my head so heavy and than the nausea. Do you think I might have Meniere's desease? I am going to make a doctors appointment.

Thanks for your info.

Elsa


Multiple Chemical Sensitivities (MCS) Rick 9:30 pm sunday june 10, 2001
I almost had another vertigo attack. I avoided it by getting out of my wife's new car and taking my different drugs. I had a vertigo attack earlier in the week which I thought was brought about by food poisoning. Again my symptoms started while riding in the new car. I've known for some time that certain chemicals at work would cause me to have vertigo attacks as would some perfumes too. It appears that the new car smell is also a trigger for my attacks. I will say these tend to be more of the foggish-nausea type than the spinning type. The brief research I have done brought forth the term MCS which is new to me but it looked as though I were visiting some of our message boards as I read how these people described their symptoms and how doctors were at a loss to help. A noticed a lot of common problems with MCS sufferers such as fibrowhatever-it-is and chronic fatigue syndrom. Another thing that I thought was interesting is that it affected far more women than men.
Since the antihistamines helped, especially the meclazine which was a surprize, I tend to think it works along the same lines as the food allergies. I must admit though the attacks feel different which is why I thought the one earlier in the week was food poisoning. I know I'm rambling but I just wanted to share this because there may be others out there besides me that know something external is triggering the attacks but it's hard to pinpoint what it is. It does seem that I am getting more and more sensitive to these chemicals which are hard to avoid sometimes. But knowing that this could be a cause for some of our troubles will maybe help us find relief. How many have thought that new carpet might be a trigger, or the new car or maybe even the new computer?
Let's don't leave out some of those cleaning chemicals also. Of course the best approach to this is good ventilation which is easy enough if you know that's what's causing your symptoms. Well I hope this helps some of you as it was an eye opener to me. Guess I'll ride with the windows down for awhile.


Possible Menieres Disorder? Devon Kramer 5:06 pm wednesday june 13, 2001
Since I was a small child,I have been having problems with severe dizzy spells, followed by severe vomiting (uncontroled vomitng). It strange beacause it happens suddenly,infact I have not had a spell since 1995. However I was always curious as to whether or not these symptoms were connected with an inner ear disoder. My docter at the time of these spells, said there was nothing physically wrong with me? Id like to know if this sounds like Menieres Disoder? Could someone write to me as soon as possible ?
Devon Kramer


AOL dizzy lounge chat room Rick 4:19 pm friday june 15, 2001
here's the address to the dizzy lounge chat room on aol. Whenever your online, check and see if anybody's home. We had a rather nice chat today aol://2719:2-2-Dizzy%20Lounge
rick

note to readers;
The above Dizzy Lounge link will only work if your ISP (Internet Service Provider) is AOL


re: Possible Menieres Disorder? gina 12:59 pm tuesday june 19, 2001
hi devon i found your page as i was researching meniere's syndrome since i believe it is what i am suffering from. i had my 1st dizziness episode when i was pregnant with my 1st child in 86. through the years i would get dizzy once in a while more lightheadedness though. i have had ringing in my ears for a long time. sounds like a constant tuning fork ring. for the past month i have been feeling really dizzy so i went to my doctor. finally i found one doctor who is willing to send me to an ent which is where i will be going on the 26th to hopefully get a diagnosis. all along i have suspected meniere's because as you probably know, meniere's can come and go away for long periods of time even years.
what i want u to know is that you should be checked for meniere's since you seem to have the symptoms too. yesterday morning was the worst i ever had because i woke up with the room spinning and could barely make it to the bathroom feeling like i was going to throw up. i felt like i was walking through those spinning tunnels they have in some amusement parks. i just ran to my patio doors, sat on the floor and opened them for air and waited for it to subside.
I called my doctor but she just told me to take my meclizine and xanax which totally knocked me out the whole entire day. i feel a little better today since i am not spinning but i also feel knocked out and very weak. i hope i can hang in there til the 26th and evenb then i wonder if there's anything that can be done since i don't see anything in my research so far. good luck to u and hope u will find out what's going on with u too.
take care, gina :)


re: AOL dizzy lounge chat room gina 1:04 pm tuesday june 19, 2001
greg hi can u send me that address on my email so all i have to do is click on it? i'd be most grateful i am going to an ent on the 26th because i am experiencing vertigo and they are going to see if it could be meniere's hope u r ok and hope u get well soon :) gina


re: What is wrong? gina 1:11 pm tuesday june 19, 2001
hi elsa sorry to hear about the dizziness you have been experiencing i believe it sounds like meniere's but hopefully you can go to your doctor and they can refer u to an ent to diagnose you. i will b going on the 26th myseld i have had this problem for years now however it was so sporatic that i figured i could deal with it. lately it seems here to stay and it is very debilitating i am hoping to find out what it is and what i can do about it. yesterday was the worst because the whole room just kept spinning without letup and i was so scared and nauseous. i calle dmy doctor thinking she'd tell me to get to the er but she didn't. she just acted as though this was something i just had to learn to deal with gosh i hope the ent on the 26th can help meantime i hope u seek the advice of your doctors as i do not believe this is something we should have to just live with talke care and good luck gina :)


re: Dizzy Me gina 1:15 pm tuesday june 19, 2001
hey rick thank you for the info about possible food allergies and meniere's seems as though this is going to be something i can research because the doctors seem to think all i need to do is take medication that exhausts me and that's not possible with 2 kids to take care of thanks for the tip take care
gina


re: Dizzy Me gina 1:30 pm tuesday june 19, 2001
hi jerry gosh i feel so bad for you i know exactly how you feel and it's not a joke. when i tell my friends and family they all laugh and make jokes about me being dizzy all my life. they don't realize how scary this is. i mean i can barely function and i have no idea what to do about it. i have 2 kids to take care of thankfully they are old enough 15 and 12 but still.. i want to be able to take them places and be involved in their lives like i have been.
I started getting dizzy when i was pregnant with my 1st 15 yrs ago. since then i had a few episodes but they were so few and far between I wasn't too concerned. 3 wks ago i woke up with the bed trying to toss me on the floor. it was so scary, and i felt nauseous so i had to get to the bathroom. as i was getting there, I felt like i was balancing in those revolving tunnels they have at amusement parks lol i just ran to my patio opened the doors and sat on the floor till i started feeling a lil better i callled my doctor but she acted like it was ok and told me to take xanax and meclizine of course I don't have to tell you i was very drugged up so i slept almost all day. i feel a bit better today no spinning but i feel drunk and unbalanced. well, on the 26th when I see the ent i am hoping something can be done to help me.
I am sure it's meniere's but would love to put a name on this from a professional then i will try homeopathic treatments since the med prof seems to think i just need to stay \sedated which I refuse to do.
You take care jerry and keep in touch gina :)


re: AOL Instant Messenger gina 1:33 pm tuesday june 19, 2001
50079002 that's me don't mind my screen name it was just me being silly lol im me if u see me on take care :) gina


re: Just stumbled in here... gina 1:48 pm tuesday june 19, 2001
hi kathy thanks for telling us your story i am also 44 interesting i have 2 kids and my husband is sweet also. we r lucky in that since most people find this unbelievable. i mean i can't even believe it sometimes i started getting it when i was pregnant 15 yrs ago. the whole rm started spinning and it freaked me out i was yelling for my husband to throw himself on top of me to keep me from falling off the bed yikes since then i have had more of an unbalancing or lightheaded feeling once in a while it was so infrequent though so i was ok with it i knew it would finally pass. anyway all the doctors wanted to do was put me on antivert and even prednisone.
I won't go near prednisone and antivert or meclizine makes me tired. well last week i woke up with the whole bed and room spinning wildly and i freaked. i felt nauseous and started like a cold sweat. i ran to the bathroom while the room was dancing around lol i was crashing into the walls to get there lol i ran to my patio and opened the doors and sat on the floor indianstyle til i started to regain my equilibreum. i called the doc and she said it sounds like meniere's and hooked me up with an ent on the 26th. meantime she told me to take meclizine and xanax which had me pressed to my bed all day. i feel a bit better today but still feel weak and groggy and kind of stoned lol but, i am making it. i hope u get better soon and find a good ent to help i will let u know what mine says take care kiddo :)
gina


re: Meniere's ?? gina 1:51 pm tuesday june 19, 2001
sounds like meniere's as it can come and go for years i read that it is hereditary do some research sounds like meniere's to me gina


re: Acceptance gina 2:17 pm tuesday june 19, 2001
hi karen
thanks for that message. it really comforts me. i am just now doing what u have been doing for the past 20 yrs and i realize before i drive myself crazy that you are right. the research has shown me there really is no cure and since that's the way it is i am going to try to accept it and make the best of it. however, what about work? how do i work with this or can i get disability i mean i can't imagine how i can continue being a nurse when people's lives r in my hands what about you? r u on disability? do they recognize this disease as debilitating? i mean it has me in a mess here. i feel stoned and stumbley if that's a word lol yesterday was the worst for me and i was laid up the entire day. the xanax and meclizine have me so sedated but i am afraid to start spinning again so i am continuing to take them. i want to ask you about the chinese food and the pizza. Are they taboo for meniere's? if so is it because of the salt? my md told me to stay away from salt but she didn't say anything specific. another thing i noticed about what u said is that the rainy days causes problems. i was suspicious of that because we had had rain and high humidity for about a week straight when this started happening. i have a favor to ask u if u could possibly find the time. i would love for u to give me a basic summary of what works for you and what doesn't help. i know that's a tall order but i only want very basic info if u think it could help me or save me from any needless things to try . thanks so much and i wish u peace and happiness always
gina


re: Acceptance Karen 3:50 pm tuesday june 19, 2001
Hi, Gina !

I am so happy that you actually read and accepted what I had to say. As you can see, the percentage of people with Meniere's that "really" want to be helped is very small. Most people just want to complain and get as much "negative" attention as they can get. I know that sounds harsh, and I am NOT a harsh person, but over the years I have found very few people that want to listen and want to hear from someone that has learned to live with this debilitating disease.

I am in the process of fixing dinner right now, but I will write to this Board tonight and tell you my "magic cures" :-).

Thoughts and Balance

Karen :-)
I'm listening -


(no subject) gina 10:47 pm thursday june 21, 2001
wow greg your website about meniere's was really helpful and so professional. it's obvious you have done your research. i related to the brain fog symptom never thinking that had anything to do with meniere's. but it was always freaky to me that i could be driving a familiar stretch of road and suddenly have to ask where the heck i was. my kids would think i was kidding and i'd kinda play it down so as not to bring attention to it. now i see that this could be part of the syndrome. thanks greg for all yout patience and time and concern for all of us. i can't even believe i got here through my hotmail. Wow i am getting there and i didn't get lost lol peace, gina :)


re: Uncontrable Disease Greg 4:23 pm friday june 22, 2001
Hi everyone

Yes, Misty, it can seem uncontrollable and even "invisible" at times. Invisible to others but all to real for us. I had several doctors tell me there was nothing they could do for me until I saw a neurotlogist. He at least was able to give me 6 more years of being able to work and function normally. Since it is in both ears, there is no cure but I take a diuretic and a CNS sedative, and try to avoid salt and stress(that is a tough one) and am at least able to do every day things.

There are treatment options for people. For example, in some cases Meniere's is an autoimmune response. The immune system attacks the inner ear for some reason(like Lupus or Rheumatoid Arthritis) and periodic treatment of corticosteroids help considerably. There is a treatment called DMZ, where dexamethasone is injected into the middle ear and reaches the inner ear. It can be a relief, if the problem is immune system related. And a lot of people claim that certain foods trigger dizziness attacks.

And of course there are various other treatments available. They work with some and not with others. But to tell someone there is nothing that can be done, I think, is inappropriate. I made a web page called What Is Meniere's and it mentions symtpoms and treatment options and such. You can click here to get there.

Best wishes,
Greg
Inner Voice of Meniere's


re: Acceptance Karen 10:48 pm monday june 25, 2001
Hi -

So very sorry I haven't answered you sooner - you probably won't believe this but I did write a huge response to you the evening I said I would, and at the end, my computer froze up and I lost the whole thing. I was a little annoyed-needless to say. Since then I have just been working and plain old busy.

You asked me about foods and why I think they bother me - I just think that allergies in general play a huge part in Meniere's Disease. With me, anything that has tomatoes, cheese, and especially eggs, as well as Chinese food can cause me to experience a really bad day. One of those days where I am walking into walls, etc. What I do is just tell myself that if I eat pizza or Chinese or Chili, etc., I am going to feel lousy the next day and then I decide how badly I want to eat those particular foods. Normally I go for the food :-)---and live with the bad day. I don't watch my salt intake - I do drink maybe two cups of coffee a day but have eliminated caffeine pop. It does bother me. I drink decaffeinated tea - hot or cold. Again, I want to live and enjoy as much as I can for as long as I can and driving myself crazy about what I should eat or do and what I shouldn't eat or do is just a big pain. It doesn't help anyway. All these people that "regulate" every aspect of their lives are still complaining about being dizzy - right?

As far as Disability is concerned, I tried, several years ago, to apply for it; however, I was denied. I have no idea why I was denied because at that time I was suffering not only from dizziness, but panic, anxiety, and depression as well. Now I know that they require some extreme tests that I do not want to go through. I am dizzy enough - don't want tests that are going to make me dizzier. You should talk to Greg about Disability though. He knows a lot about what you have to do and how to go about applying for it.

I work, yes. I own an Antique Mall and I work every Thursday evening, Friday evening, and all day Saturday and Sunday. The rest of the week I do bookwork at home or write poetry or read Tarot cards, sew, knit, can - anything to keep busy. The busier I am, the better I feel. That is a definite "magic cure" that most people don't want to accept. Of course there are days when I just can't function, and then I rest. But on the days I can function in any way, I keep busy. I really enjoy life and have decided that my life lesson is to learn "balance". I also think that a lot of us are "control freaks" and we have been forced to let something control us once in awhile. Does that make sense? (I really am not crazy !) I spent a lot of years "not living" and I am so sad that I cannot get those years back.

Medications are many actually. These are the ones that help my dizziness the most -
Antivert - not generic - but the real stuff. Alot of Meniere's people don't take it for one reason or another, but I find that it does help me. It keeps the nausea under control and makes the spinning spells from occuring every day. I faithfully take 25 milligrams before bed and 12.5 milligrams in the morning. Sometimes I take another 12.5 during the afternoon, but very seldom. A Neurologist told me it can't hurt to take it every day and that I could take as much as 100 milligrams a day. It no longer makes me sleepy-it did in the beginning.

Phenergan Tablets are a miracle drug for me. I haven't heard anyone else say that they have been given them. My ENT gave them to me right away and I think they have helped relieve the pressure in the ears and have slowed down the tinnitus and the hearing loss. I have hardly any hearing loss- knock on wood. I really notice it when I don't take them - they are super. I take one before bed and one in the morning. They no longer make me sleepy either-they did in the beginning.

Dyazide - I take that once a day or once every other day. It helps but it no miracle drug.
Allegra D - if I have an extremely dizzy day, it helps alot. I would consider it a definite plus. I don't take it all the time, but when I need it I take it.
I take Tranxene twice a day - very small dose - 3.75 milligrams and that helps. It works like Xanax- calms the nervous system. I can't tolerate Valium but I know it helps a lot of Meniere's patients. And last but not least - Zoloft - mild dose also-50 milligrams a day. That is for the depression that Meniere's "walks" with. I can't imagine that there are very many people that suffer from Meniere's that don't experience depression, panic and anxiety. It is a horrible affliction-granted. I hope some of this has helped you. If there is anything else I can answer or talk with you about, let me know. Live your life - each and every minute of it and things will begin to "balance" out - I promise.
Thoughts
Karen


re: Acceptance Rick 4:55 pm tuesday june 26, 2001
I just wanted support what Karen has said and add just a little more about the allergies. Food allergies seem to play the most havoc with me. At first I would get the dizzies and the brain fog, but at some point the offending food will cause me to have an attack within 10 minutes after consuming that food. Once that starts happening it's easy to identify the troublesome food, but it can be really hard before it gets to that stage. I take benadryl and chlortrimeton to help with the allergies also. Just wanted to add my two cents worth.
Rick


Found a new trigger Rick 10:41 am wednesday june 27, 2001
Had a major attack day before yesterday right after I had eaten lunch. I had been fighting the dizzies for about a week and I've been trying to figure out why. Since this happened in less than ten minutes after lunch, I'm sure it's a new food allergy. The only two that were common with all the dizzies and then the vertigo attack was eggs and caffiene. So I guess we'll see. I had also forgotten to take my benadryl before lunch yesterday , so I'm sure that didn't help anything. I did take two antivert when it happened and at least I didn't get sick. While I was laying on the bed at medical dept at work during the attack, I was keeping my eyes closed which is what I have to do to keep from getting sick. I was then touching my eyelids and I could feel the eyes jerking rapidly like a muscle spasm. And there wasn't anything I could do to stop it. I have always theorized that vertigo was eyemovement without the brain knowing and by golly I think that just about proves it. I'm feeling good today, was a little dizzy yesterday, but nothing compared to the day before yesterday. I'm sure it will take a few days to fully recover, it always has in the past. Well thought I would share this vertigo moment with everybody.
Rick


re: Found a new trigger Carrie 12:55 pm thursday june 28, 2001
Hi Rick. Sorry to hear about your new trigger. I also have problems with eggs. I've given up caffeine long ago, but when I did I felt so much better. Refined sugar is a trigger for me as well.


re: Acceptance Karen 11:18 pm sunday july 1, 2001
Thanks, Rick ! I agree that food allergies are bad. I have found very few things that instantly cause an attack other than eggs and certain coffees. It would be very easy to identify troublesome foods - and, that's a controllable thing. Now all we have to do is figure out how to equalize our "little heads" when the weather is changing. I will get a real bad dizzy spell about 2 or 3 hours before a rainstorm - and then be very off-balance the rest of the day. I hate it because there is no way to control the weather. I simply can't understand if "we" realize that the barometric pressure affects most of us, why somebody out there can't find something for us to take to "fix" that. All the time and money that is spent on research and there is very little done for us. Stinks, huh ?? :-)

Hang in there, Rick - a positive attitude helps immensely.
Karen - :-)
I'm listening -
AFTERTHOUGHT - For any of you out there that reads this, I would love to know how many of you are Type A personalities and are a bit of a "control freak". My own little survey, if you may :-).


re: Acceptance Rick 10:24 am monday july 2, 2001
Hi Karen,
Changes in barometric pressure don't make me dizzy but One of my eustation tubes isn't open as much as the other one. When I fly I have to really work at it to get the pressure to equalize. At one time I suspected barometric pressure and I found a lot of info. I think the term used is Barotrauma. If you search on that you may find some usefull info to help you with that aspect of this disease and there are a lot of people with our symptoms that suffer from barotrauma. I found your question about type A personallities intersesting. I did the same thing on another board about a year ago. I am a type "B" and I thought that this might have something to do with my condition. Probably 20 responded and I was the only "B" in the whole bunch so I think you'll find that type "A" personallities make up the most of MMer's.
Rick


re: Acceptance Karen 4:52 pm thursday july 5, 2001
Hi, Rick !
Thanks for answering my question. I don't think anyone else saw our posts so perhaps I will enter a post about personality types just to see.

I will definitely go search out barotrauma. I'll try just about anything - I have never been on an airplane because of the Meniere's. I can't do escalators and have a hard time with elevators so I figured it wouldn't be a good option for me. Does it bother you a lot?

(Hi, Greg !!!!)

Thoughts
Karen :-)


I'm listening - re: Acceptance Rick5:24 pm thursday july 5, 2001
I had to fly three times in the last 2 months. It doesn't seem to bother me but I've had several attacks in the last week so that is stuck in the back of my mind. But I have never had an attack while flying. I have to take benadryl, antivert, and afrin nose spray so I can equalize the pressure which is really hard to do in my left ear. But I can usually hold my nose and either suck in or blow to force air into or out of my left ear. I don't know if that's good or bad but It's all I know to do. later
Rick


re: Uncontrable Disease Bobbi 1:16 am sunday july 8, 2001 Hi Misty,
I had to give up on getting my hair washed at the salon because I cannot lay back anymore, so I wash it, then go. I'm thinking you experienced the same thing at the dentist. The dentist knows my problem, so he doesn't lay me back as far as he does others. And he tries to be quick. Some doctors will try to work with us and other couldn't care less.

I don't know if you've heard of Vertigoheel and/or SERC, but several have had good results with both. I've been on VH for about 3 years now and had great results. That's not to say everyone does, but it's worth a try. I just had some unusual spells pop back up and decided to try SERC as well. Even though they're not FDA approved, there's been studies done in Europe and they've had great results. I order them from France.

These are just alternatives to surgery and if they work, it's worth it. Write me if you need any more info........and I also think Greg has this info.

Be blessed,

Bobbi from Kentucky


Low Stomach Acid Rick 10:04 am tuesday july 10, 2001
My MM took a strange turn in the last couple of months. As you probably know, I went 5 months without a vertigo attack but I have had several in the last month. The attacks caused by food allergies are the easy ones. I always have a major attack within 10 to 15 minutes after eating an offending food. I only had two of these and it looks like I'll have to add eggs to the list. I had a couple caused by Chemical sensitivities but those are easy to identify because they happen very rapidly like the food allergies. Of course in each case histamine is the real culprit that is messin' with my ears. But I've also had several minor attacks and they always come when I haven't eaten for a while. I had identified this before but I was usually good for 4 to 5 hours and now it's 2 to 3. I also noticed that if I drank a lot of water on an empty stomach I was guaranteed a vertigo attack. I did a little research and it appears that Histamine has a role in the digestive process also. It tells the stomach to produce acid which is why Tagamet and the other acid reducers work so well. They are actually antihistamines. This may explain the "water" phenomenon. From what I've read the stomach tries to keep a ph of ~2ph. A lot if not all tap water is at a ph of 9 to maintain corrosion in the piping system. So when I drank the water, the ph elevated and histamine was released to stimulate acid production and lower the ph.
I've often wondered why I also developed these food allergies in the last couple of years and I read where if you have low stomach acid your food does not digest completely and this causes food allergies mainly to wheat. Guess what? that was my first food allergy.
I've often wondered why my soft drinks seem to help so much and now I would have to think that it is the ph lowering capabilities.
Several of the articles stated that the body starts producing low stomach acid when adults reach their mid 40's. Guess what? I'm 46.
It also said that a lot of indigestion that people had was caused by low acid production instead of excess acid. And that the Tagamets then complicate the problem by inhibiting acid production. In conclusion I guess I was somewhat amazed at how well low stomach acid could explain so many of my problems that I'm having. Granted I don't believe that this caused MM or that it can cure MM. It's just that Histamine triggers a lot if not all my vertigo attacks and this looks as though it would be a definate source of Histamines. It also amazes me at how closly MM parrallels Asthma. So for the time being I'm drinking my water with meals, trying to eat something every two hours, keeping away from foods that have a high ph, and am taking my meds at half doses every 2 hours instead of full doses every 4 hours. Mechlazine is really working good for me now and it used to do absolutely nothing.
Hopefully some of you know more about Low Stomach Acid and can post some links or e-mail me the info. I want to learn more about this condition but I haven't found a lot of info on the web yet.
Thanks,
Rick


re: Low Stomach Acid Greg12:38 pm tuesday july 10, 2001
Hey Rick,
Your posting got me to thinking. I know that people use papaya and pineapple extract for a digestive aid. Bromelain(pineapple) works pretty well. But, I got to reasearching low stomach acid and came across some very interesting information.

The drug SERC (betahistine hydrochloride) is a common Meniere's treatment in Europe and Canada. However it is a histamine. One would think it would make allergies worse, but maybe it helps people that are not allergic. However, allergies seem to be a common thread with most of us.

Also while researching low stomach acid, I came across terms like histamine, betaine hydrochrolide, flavinoids. So there seems to be a connection. I also discovered that artichoke extract is supposed to be a good treatment. Here are a couple of links about artichoke.

http://www.puritan.com/healthnotes/Herb/Artichoke.htm and http://www.naturalhealthconsult.com/Monographs/artichoke.html

Greg


re: Uncontrable Disease Dr. John L. Lund2:38 pm tuesday july 17, 2001
Dear Misty,

My name is Dr. John L. Lund and I practice in California where I do a procedure called NCR or NeuroCranial Restructuring. I have had many patients with Vertigo who no longer have the symptoms. Please go to my web site @ www.ncr4health.com and read about this procedure. If interested send me an email at johnl@cybertime.net

Dr. John


re: Low Stomach Acid Carrie12:04 pm tuesday july 31, 2001
Hey Rick,

Just a thought, you may want to check the type/quality of water you are drinking. Some sources of water have varying levels of ph.

Also, I'm curious if you or others out there have ever tried or heard of Vinpocetine for Meniere's. I'm searching for any information on this European drug/treatment.

Thank you.
Carrie


re: Low Stomach Acid Rick 8:50 pm tuesday july 31, 2001
i I haven't heard of that drug. Please keep us posted on what you find.
Rick


Vinpocetine Greg11:28 pm tuesday july 31, 2001

Greetings all, From what I have found on Vinpocetine, it is a vascular dilator that acts similar to Niacin and Gingko. I understand it is available over the counter now as a Natural Supplment. Perhaps it will benefit some people out there. I hope so. Here is some info; http://www.raysahelian.com/vinpocetine.html

Greg


re: Vinpocetine Carrie 12:12 pm wednesday august 1, 2001
Thank you for the info Greg. Other information I've gathered has sounded positive. A friend of mine traveling to Europe encountered a Meniere's victim. In their conversation the Meniere's victim indicated how he was virtually symptom free due to taking Vinpocetine. He had been taking it a little over a year. Apparently, as US doctors automatically prescribe a diuretic in each new diagnosis of Meniere's, European doctors prescribe Vinpocetine. He said that in conversations with other European Meniere's sufferers the length of time to see relief of symptoms varies from 6 weeks to 3-4 months. The dosage in the information you posted was the same.

I've started taking 5mg three times daily last week. I'll keep you posted.


re: Vinpocetine Greg 2:11 pm wednesday august 1, 2001
Hi Carrie,
Thanks for informing us about Vinpocetine. A lot of people may give up treatment after a week or so, but now we know that it may take a few months. That is very important to know.

Please keep us posted as to how you are doing. :)

Greg


re: Uncontrable Disease misty 1:48 pm thursday august 2, 2001
I visited your website and found it very interesting. In a recent visit to my doctor for a sinus infection (which I get on a regular basis) he mentioned that I needed to speak to my dentist about TMJ. After doing some research on TMJ I noticed that it produces a lot of the same symptoms as Meniers. I am on all types of allergay medicine. A nose spray, pill, and eye drops but I have not been able to get rid of these naggin headaches or the fullness in my ears.
Do you know of any doctors in Texas that do the same type of procedures?

Thanks for your response,
Misty


re: Uncontrable Disease Greg 2:45 pm thursday august 2, 2001 Hi Misty, Are you talking about Meniere's specialists? If so, here is a link to the American Neurotologist Society. You will find quite a few in the state of Texas. Click here to get there.

A neuorotolist specializes in ear/brain disorders and procedures, and things like Meniere's.

Greg Is this what is going on with me? Mary Lou 5:24 am friday august 3, 2001
I just happened along the word Meniere's while researching info on Labyrhinthitis and I was shocked at what I was reading. For about 13 years now I have had multiple problems with balance, lightheadedness,nausea and a multitude of other symptoms described. After many tests and many Doctor visits the only conclusion given to me was that I had BPV Benign Proxymal Vertigo. I have lived with chronic fatigue, muscle aches, and "The Brain Fog". I was told it was stress related, probably caused by anxiety. The only thing that made my anxious is the fact that I always felt horrible. I would greatly appreciate any input as to how a diagnosis was obtained.


re: Is this what is going on with me? Rick9:58 am friday august 3, 2001
When you said chronic fatigue and brain fog it sounded all too familiar. I found out about 67 months ago that wheat, gluten, and oats were cauing my vertigo attacks. When I eliminated them from my diet not only did the vertigo attacks stop but the fog and fatigue went away also. It probably had started 2 years before but it was so gradual I didn't notice until it started triggering the vertigo attacks all the time. One thing to remember is that it was Histamine that was causing the problems, the wheat was just triggering the histamine release. Anxiety and stress also will cause the body to release histamine. I recently started having vertigo attacks before I ate and found that the body releases histamine to trigger stomach acid release and also found that people develope food allergies from incomplete digestion. I have another post about this topic that you may want to read, but I'm about a month now vertigo free with some dietary changes. There are multiple things that can cause a histamine release, so you may want to look at different things other than food allergies that may be causing your problems. I also take benadryl and mechlazine to try to control the histamine. It may not be your problem but its easy to check out and doen't cost anything and who know's you might get lucky.
Rick


what's been working for me Rick10:05 am friday august 3, 2001
I thought I had posted this here but I can't find it anywhere so here it is. Disclaimer: The following is what I do to control my vertigo attacks and I am in no way suggesting that anyone should try any of these things. I'm just telling what works for me and as you know, we are all different.
Rick
I have found that Histamine triggers my vertigo attacks. The main source of Histamine has been from allergic reactions to some foods mainly wheat and oats. I also quit consuming other foods at that time that may or may not cause a histamine release: Coffee (caff and decaff), anything with nutrasweet, anything with caffeine, and rye, barley, malt, etc(they are all in the wheat family of grains). I went 5 months without a vertigo attack after I started the elimination diet after having up to 4 to 5 a week and sometimes 2 in one day. I recently started having vertigo attacks again 2 to three hours after eating. After a little research I found that Histamine plays a role in digestion and that it's histamine that causes stomach pangs and one of the things that tell the stomach to release acid. I had noticed that these vertigo attacks had come about with the heat of summer and my increased consumption of water. I think that maybe the higher pH levels in the stomach caused by the water was triggering the histamine release in order to trigger the stomach to manufacture acid to bring down the pH. I also read about Low Stomach Acid problems and found that food allergies, especially to wheat, was caused by poor digestion which is caused by low stomach acid. I thin started avoiding hi pH drinks and foods and started drinking lemonade and grapefruit juice in order to keep the stomach pH low and try to prevent the histamine release. I still have to eat about every 2 to 3 hours but now it's an apple or some fruit that won't elevate the pH. I still drink water but It's usually with a meal or when I eat an apple or something like that. For years I thought it was a blood sugar thing was triggering the vertigo attacks when I haven't eaten but now it seems it would be a digestive disorder involving histamine and stomach acid. At least it ties everything together better than the low sugar did. I've now gone 2 to 3 weeks without a vertigo attack, so hopefully I am right on this newest theory. I also take half doses of my medicines every 2 hours instead of full doses every 4 hours and that seems to help also.
The Medications I am presently taking is 25mg Benadryl every 2 hours (200mg daily) , 12.5mg of mechlazine every 2 hours(100mg daily). When I get home from work I usually don't take these medications until bedtime in case you were wondering why the math wasn't adding up. This is just to keep me employed, when I get home I take my chances unless I'm having a really bad day. I take 1000mg of C, 400mcg of folic acid, and 500mg of pantathetic acid twice a day. I take a multivitamin once a day. I keep Primateen tabs on hand in case of an imminent vertigo attack. These are ephedrine tablets and ephedrine prevents histamine release. Since it's also a synthetic Adrenalin, you need to be careful with how much you take. I also have a prescription for Flonase which takes care of my airborne allergies. It's really too early to claim success with the Low Stomach Acid theory but at least it tied everything together, so I'll keep you posted on my progress.
Rick


reflection on causes/managing v7:29 am saturday august 4, 2001
The thing that has prompted me to write to this news group, is that I've had a signigficant break from the sypmtoms that seem to be lumped together under the label menieres disease.
As a kid I had more than my quota of inner ear infections and the associated extreme vertigo, etc.
For many years I've had to manage symptoms carefully. If I can focus well enough to run(yes, it's the last thing you feel like doing)...it really helps. Managing allergy is significant. I did years of food tests. No identifiable problems. Yeast has proven my most significant issue. I constrain my exposure to it now . Makes a notable difference. I also had 6 months of treatment for candida(huge response in my allergy tests) Keeping appropriate intestinal flora helps- for me that mostly means avoiding sugars.
Anything that causes me head/sinus inflammation used to be provoke inner ear problems. A cold used to be a disaster...but aside from short (a few weeks)expisodes(as per colds) I have been gradually managing better and reducing the impact.

OK - here's the big break...
Earlier this year I had a holiday, 2 weeks in the tropics. On the second day, I got so bitten by insects I was quite allergic to that I spent the rest of the time on antihistimines. (I do try to avoid extended medication) By the time I came home - I had NO sign of meniere's symptons. (can you rememeber how good that is!) I've really put it to the test since. Colds/allergin exposure/no exercise/etc

What do I think it was? - all that drinking, antihistimines, rest, maybe. I suspect the plane rides contributed. I suffered extreme sinus pain and loss of hearing in one ear for quite a while after one flight. While I'm sure I'll get The Symptons again, I'll certainly experiment with the same "regime" again, including the pressure changes, maybe not the biting insects.

My final rant.
I have a real problem hearing the term Mèniére's Disease- well at least the way I hear it applied sometimes. While I have not done much research, this label seems to address symptoms that we know are caused by a diverse range of things. I have the impression that when some people(including some medicos) use the term Mèniére's Disease, they imagine that there is a common (mysterious)cause and this in turn doesn't help understanding, management and morale. It seems about as useful a prognosis as the word headache.

Please excuse my self-indulgence. I hope there's a snippet of usefulness for someone. Good luck and management.
v


re: reflection on causes/managing Rick4:30 pm saturday august 4, 2001
I'm sure it was the antihistamines plus the fact that you had already elimnated the allergens. Thanks for echoing what I have been saying. You may want to read my posts just in case you get another spell and not sure why.
rick


Bloated.... Why? Rhiannon 10:48 pm sunday august 19, 2001
I was diagnosed last April and have been taking Triamterene and Flonase. I began bloating more and more on the Triamterene, and stopped taking it 2 weeks ago. Now I am losing a lot of the bloating, but I can feel my ears filling up and don't know what to do! The Triamterene helped my ears so much, but why did I bloat so badly? Am I drinking too much or too little fluids? I had a blood sodium test right before I stopped taking it, and my sodium level was 135, which was borderline. Is this related? What am I doing wrong? Help me, please... I am soo frustrated.


My mom has meniere's A href="mailto:sd_harker@yahoo.com">Susan Harker 0:07 am sunday september 2, 2001
My Mother has always suffered with motion sickness but now she gets these horrible dizzy spells where she can't even move. She says the room seems to be spinning in two different directions at once. She has been to the doctor several times only to be told that she does not have meniere's and that they don't know what is wrong with her. She falls down frequently and since she has osteoporosis she has broken several bones. She has tried several of the cures listed on your website and some have helped but have not stopped the problem. Any more suggestions? How can we convince her doctors that she has meniere's? They said the room would only seem to spin in one direction if it was true menieres and since hers seems to spin in two directions at once she does not have the disease. Is this true? Is this disease genetic? Are my sister and I at risk of getting it also? When my mother-in-law was in her early 20's (about 40 years ago) she was having meniere's attacks and her doctor gave her massive shots of vitamin B-12. She has never had another attack. Have you heard of this cure? Sincerely, Susan


re: My mom has meniere's Rick 7:57 pm tuesday september 4, 2001
I've never heard of the spinning in two different directions so i really don't know about that. Since there is no cure for Menieres, getting of positive diagnosis for MM only means they've ruled out everything else. Does she have Tinnitus and hearing loss. Those symptoms with the vertigo is what will usually get you a dx of Menieres. I have found my vertigo attacks caused by food allergies mainly but I'm sure you read that in some of my other posts. There's some other message boards on the net so you may want to pose your question to them also.
Rick


Feedback on Trans-Labyrinthian vestibula Corinne 5:47 pm monday september 17, 2001
Hi! First time writing here; I am a 45-yr old happily married mom of a 12 & 15 yr old. Diagnosed over 4 yrs ago wit auto- immune related Menieres AKA AIED (Autoimmune Inner Ear Disease) Original onset, sudden hearing loss in my one GOOD ear (now only operates at 50-60%) deaf since young child in left ear of unknown causes) sonn followed by vertigo, tinnititus etc. I was referred to the BEST neurotologist in Seattle (he's even in the Best Drs In America publication), gave me options sratring with steroid tx by a rheumatologist he works closely with, 2 who actually know something about these mysterious esr disorders) I saw a cuople others at randon for 2nd opinions who admitted they hardly had any patients with this type of AI disease, AIED is rare and characterized by meniere symptoms and history of earlier hearing loss, likely due to multiple childhood infections. Something then triggers the autoimmune response to attack the antigen in your ear(s) thus slowly dsetroying the cilia. SO...I finally tried steroids 80mg day and immuran and methotrxate and had zero tolerance for these meds; they caused liver problems, diabetes, and necrosis of the hips requiring surgery, so BEWARE the risk factors. They DID however give me about 3 years of control over timmitus, vertigo, nausea, and my hearing returned to bear normallevels in the good ear. THe BAD side was I could npt wean off them without recurrence of the syptoms, so I said forget it last winter and ceased all meds. Turned down chemotherapy and plasmapheresis as too invasive, risky,and no guarantees. I was HAPPY for 6 months - the hearing stayed stable, the vertigo tolerable & rare, best of all I dropped all that steroid-induced weight and am back to size 12 (Embarrassing having my orthodontic patients ask me my due date....) But in jUly, all came crashing back and last week I dropped in 5 seconds with the room upside down and NO WARNING! They tried to call 911, but I stopped 'em. I now am afraid to drive tho because I might hurt someone if that happened on the freeway. My Dr. performing the above surgery in October in the hopes that it will help the dizzi attacks (again no guarantee because it might be right-ear related also, but the surgery can or will destroy any chance of hearing in that ear. I have been TRYING to adjust to a haring aid for 2 months but I hate it, since the programming is for my worst audiogram and as you all know the level of hearing can fluctuate minute to minute making a keystroke a sonic boom. Anybody else had nerve section? PLEASE tellme about it, I understand it is intracranial and requires inpatient care. Thanx for letting me bore your ears off! Sincerely, Corinne in Issaquah, WA


caloric test mike 6:53 pm monday september 24, 2001
I was diagnosed with menieres about 1 year ago. Had positive pressure test, and fluctuating hearing. I just had a shunt in left ear. ENT was to put me on disability but said I needed one more test (caloric test). It came up normal, I had alot of vertigo and eye movement. Does this mean I do not have menieres? I have fullness, hearing loss and alot of vertigo. Please help.


meniers desease lilian 10:45 am monday october 1, 2001
can anyone help with any info on this and a cure i loose concientness when have ing a attack


re: meniers desease Greg 11:10 pm monday october 1, 2001
Hi Lillian,
Meniere's can affect people so differently. Can you tell me a little more about your problem? Does it seem to be one ear or both? What exactly happens during an attack? What type of treatments and testing have you had? It is unusual for one to lose consciouness with an inner ear disorder, but certainly it can and does happen sometimes. There are treatment options, but it depends on one's condition.

Sincerely,

Greg
gf899@hotmail.com
Inner Voice of Meniere's
What is Meniere's?
https://www.angelfire.com/fl/maxcomf/whatis.html


?????? Susan 2:08 pm monday october 1, 2001
Thinking back a few years I remember certain episodes which passed quick. At the end of January 2001 I was off sick from work with the flu. On my way back to work on the 3rd day we ended up making a detour to emergency. They gave me something to settle me down but could not find anything wrong. Went to work the next day and just made it through. Next day ended up in emergency again.

My symptons have been anxiety (not knowing what is going on), dizziness, nausea, earfullness and just feeling totally brain dead. I could not leave the house except to go to doc's and ent for 3 months. Returned to work p/t. Body could not handle f/t. I have been for all sorts of tests and most came up with is inner ear viral infection. 2 weeks ago finally went for CT scan. They had difficulty finding position for me. Finally flat on back I made it 3/4 way through scan and had anxiety attack or something. Going to ENT to see if it was enough and if anything showing.

A month ago I also started to get nasal conjestion. I sometimes feel that am choking. My ear also gets stuffed. Do not know what brought this on.

Well I thank anyone who has read this. Please write back if any conforting news. I just feel like I am going crazy. By the way I never mention I was fired from my job because I could not work full time. This really helps!


re: ?????? Greg11:25 pm monday october 1, 2001
Hi Susan, Anxiety is understandable. I remember many times, thinking, "What is wrong with me?" and not knowing for years. That in itself could drive one crazy. I am glad that you had a CT Scan. Hopefully your doctor can give you some relief soon. Please feel free to email me any time, even if it is just to vent. GF899@hotmail.com IF WE DON"T HELP EACH OTHER.......WHO WILL????

Greg

Inner Voice of Meniere's


Meniere's disease Shirley
9:27 pm thursday october 11, 2001 I just was wondering how I could get rid of this disease, or if there is a cure, if not how do I cope? Thanks,


Meniere's and surgery Dahlia 0:36 am saturday october 13, 2001
I've had Meniere's since I was as young as 9 or 10. I had my tonsils taken out when I was 13 because I was losing my hearing! I would have regular bouts with vertigo and severe vomiting then I'd feel better. I was finally diagnosed when I was 28, I am now 50. I just had nerve section surgery this past August 14, 2001 because my attacks came daily and lasted a minimum of 11 hours. Dr. said this is the 4th(last) stage of Meniere's and surgery was it. I was desperate! I'm glad I did it. I 'd like to talk to anyone and everyone who has had a nerve section. I didn't have any complications and am in the "compenstion" stage where my brain adjusts to only 1 balance nerve. I'm feeling better every day but it would help to know if what I feel is normal.


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

Email: gf899@hotmail.com