Meniere’s disease as I have written about many times has changed my life (mostly for the worse). It is hard to rank which is the worse change in my life, going on disability, which is a big one or being at home and not working. This hasn’t been good for our finances and it can be bad for your psyche if you let it. I try to stay as busy as I can and I also try to stay as positive as I can. There are other sacrifices that have been forced on me too.
My relationship with my young son is good but it is difficult for him to understand why I can’t be as active doing things as other fathers are. He knows that I get dizzy very easy but he often wonders why I have this problem. I wonder too.
I have been lucky that my wife has been very understanding through out this whole nightmare. She has certainly had to do a lot more work because of the things that I can’t do. Its rough on her but she always keeps a good spirit about her. I am a lucky man.
But through all the sacrifices and bad times there has been something good that has occurred. I have a better understanding and appreciation of people who go through life with serious health problems and how it affects them. It is admirable to see folks take such a heroic stance against some of the worse illnesses possible.
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Wednesday, September 15, 2010
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47 comments:
David:
menieres stinks, I can't stand it with my whoever heart , body and soul.
It has ruined my life in so many ways, but if this is the cross I must bear to be accepted into the kingdom of god I will carry this cross. He knows our pain, sorrow and suffering.
David: I used to want to get the laby, but after reading the blog about vestibular prosthesis and doing some research the last few weeks I am not so sure now. The one thing about vns or laby, if some of these things come to the market in the next few years I will not be able to take advantage of them. What do you think?
Talk to you soon
Stephanie
David:
first time on the blog, long time reader.
when will it all end and will they ever figure this stupid disease out. All these smart people working to figure out a cure and nothing.
My god they can give me a new heart, lung ect... Why can't they give me a new ear.
I agree with an earlier post that technology is our only chance, an implant of some sort. I don't want a laby or vns because if there is a breakthrough I am left out. I want to call the Hopkins lab, but am too shy and don't know what to ask. I read about the prosthesis in the September issue of Popular Science last month. Very interesting. I hate this disease. I find myself praying for the doctor at Hopkins. For him to do dedicate his life's work to this device, I find amazing. I often wonder if someone in his family has it and it is his inspiration? I will keep reading the blogs, if anyone has more information please share it.
Beverly
David:
I used to ask, why me, but I am now trying to accept it. You are right, it is as if our life is one big sacrifice for this disease. I often wonder what it would be like to be normal again.
David:
please help, what is this vestibular prosthesis all about. I too keep hearing about it in all the menieres chat rooms and
have heard people talking about it a lot in various magazines. I am from Austrailia and don't get these magazines over here. Help please, is it a possible breakthrough and relief from vertigo? David, I am tired of sacrificing and loosing my life to this beast.
Paul
I just returned from a two week vacation in the mountains and I did not have one attack. Last year I had 3. I'm just now catching up on all your posts and other blogs. I try so hard everyday to not feel sorry for myself, because I know there are so many other people suffering from much worse diseases than I have. But it is not easy, And I know that each one of us, that share this disease, have many of the same problems but some have it harder than others. Meniere's seems to be a disease that causes our lives to spiral out of control as much has the vertigo attacks. We spend all of our time trying to maintain control of our lives, which most days can seem impossible. Reading your blog and the comments from all your readers has really helped me, because I wasn't getting much help from the doctors, other than the medicine they prescribe. I am also blessed with a supportive family which is probably the best thing we can have to get through this.
@ Beverly
I too subscribe to popular science magazine and saw the same article in the September issue. Very interesting indeed. It cannot get here fast enough.
David: I have given my life to MM for 20 years. I am now 40 and want it back.
Before I become an old man I will take my sailboat across the Atlantic to Europe and I will ride my Harley again. Those are my dreams and hope for the future. I feel the science community is waking up to the beast. The person who figures it out will be a wealthy man. I personally like others feel it will be some sort of implant that stops the vertigo. Very good reading in the September edition of popular science.
Stay positive
Phil
David:
family support is everything. Without it we are doomed to fail and with it, we will susceed. I often wonder what the next 10-20 years brings with the MM beast. Seems doctors and research is waking up to the big and growing market of vestibular disorders. Whoever is the first and gets it right will be a very wealthy man. David from your perspective and research do you feel the future cure is in medicine or technology (implants). Starting to see more and more articles and attention paid to implants. When this many smart people are after something or onto something there must be a reason. Smart people don't waste their time and energy doing things they don't think will work. I sacrifice every day with the hope good times are coming.
Love to all.... Rodney!!!!!!
David:
love the blog. My question is where is actress and broadway singer Kristen Chenoweth and the singer Ryan Adams (married to actress Mandy Moore) in this fight. As two high profile MM patients I wish they would take the lead in pushing for a cure. We need a big voice. I do not want to sacrifice anymore, I want to live life on my terms, for myself, not for the MM beast.
David: please tell me more about the popular science article?
Tammy
David:
I hate this disease. O can't give anymore. It has taken my balance, my hearing, sense of dignity at times, but I will never let it take my soul and faith.
David: I also read the popular science article at the doctors office yesterday and almost fell out of the chair. I wanted to cry, but too many people were watching. Called the lab and the implant is now smaller than a quarter and they are trying to make it wireless. Getting ready for regulatory clearance to start trials.
Stan
David:
I agree, everybody suffers with menieres.
It is one of the worst aflictions on the human body possible. My wife wants to do so much, but is helpless. Love her for her support.
David: just when I wanted to throw in the towel and surrender to the beast, my wife gave me the article in popular science, hope is a big thing with this disease and I am now hopeful again. I will fight on. I agree with the earlier post that when smart people go after things agressively as they are with these implants
they must know something the rest of us don't.
Great blog David: my first time on.
John
David:
I think I speak for all when I say "go to hell MM" In the end before it is all said and done I (we) will get the last laugh. When people collectively come together things start to happen. I see it now. I don't want to sacrifice another year, month, day, minute or second to his stupid disease.
To all the previous posts reading the article in Popular Science, I investigated it further and came to find out the lead researcher, engineer and technical person watched his mother suffer from MM for years. He is an Asian man and his pursuit of this device is relentless. He lives and breathes this project for his mother. Apparently MM is very widespread in some Asian countries such as Japan.
Tony- bilateral since 2003.
@ Stephanie,
Like you I have thought about having the laby in the past but I have crossed it off my list of possible treatments, not only for the encouraging research going on but also the possibility that my balance would be effected for ever.
I am glad that you have found strength in your faith to battle this disorder.
stay in touch
David
@Beverly,
I will have to get a copy of the popular science issue it sounds very encouraging. I wouldn’t hesitate to send an email to John Hopkins lab I bet they would appreciate the fact that there great work will be helpful to many, many people.
thanks for the comment and keep in touch
David
@ Paul,
there are some good links about the vestibular prosthesis on this blog post http://www.mylifeandmenieresdisease.com/2010/08/vestibular-prosthesis-and-menieres.html
stay in touch
David
@Sherry,
I couldn’t agree more with your view about meniere’s and how it affects those who suffer from it.
A supportive family is very important because this disorder is hard to come to grips with. I’m glad that meniere’s sufferers have found my blog helpful. I also find it helpful to write this blog.
Stay in touch
David
@Phil,
I certainly hope that you get to ride your harley again and take your sailboat across the atlantic. that really sounds great!
we all should be encouraged by this new research. this disorder will be beaten someday.
thanks
David
@Rodney,
I don’t know really know what is going to tame this beast I just hope it is soon so folks like us can get back to having a normal life. I an really encouraged by a lot of what i have read.
stay in touch
David
@Tammy,
Other folks have asked the same questions about why high profile patients, it would certainly be in their interests too. Hopefully someone will come forward.
I will definitely look into the popular science article
Stay in touch
David
@Stan
You are right, don’t let it get you completely down, things will get better.
Thanks for the info about the implant, I hope the trials are successful and not to long.
stay in touch
David
@John,
You are like me we both are lucky to have such supportive wives. When I get a chance I’m going to have to take a look at the popular science article.
thanks for the comment
and stay in touch
David
@Tony,
I can understand your frustration fully, hopefully all this new research will do some good. Good luck and stay in touch
David
Count your blessings all of you with supportive families. My family doesn't understand at all - even telling me to bring my own food to special occasions (low salt). My husband refuses to talk about any of it - the low salt diet, the meds., the hearing loss, the limitations and it has affected our relationship. The increased stress has, of course, not made dealing with the symptoms ANY easier. I'm so grateful for those of you on the internet to whom I can turn for understanding, advice and encouragement. Thank you so much for your blog, David.
Yes, we have menieres and it is terrible. We sacrifice with pain and suffering in silence, but at some time or another whether it is very soon or some time in the future, every person will have to carry a cross. All those that make fun of us, think were faking it, telling us it is not that bad, well one day they will have an illness that limits the things they can do and they will suffer in silene as well. Don't worry about what others say or do to you , because one day they will not be well either and we will see how they handle it.
@first anonymous,
I truly hate that you don't have the support that you need. I think that this disorder is difficult for some people to understand because of the way that it affects you, usually at the worst possible moment. You are right about having friends on the internet that understand what you are going through. Feel free to ask for advice, understanding and encouragement.
stay in touch and please let us know how you are doing.
David
@ 2 anonymous
I understand your pain and frustration but I really don't want anyone to go through this. Stay in touch and let us know all things are going.
David
Hi, My name is Lee. After going the past three months with the worst vertigo i have ever had in my life and no diagnosis, i started loosing hope and faith in medicine. Then my doctor diagnosed me with meniere's. To tell the truth at first i just thought it was something that would go away; but as it got worse i know something was really wrong. When the nausea and vomitting set in, i new it was bad. When i started falling, loosing hearing and having ringing in my right ear i thought i was going nuts. But now i am happy to at least know what is going on. The goal now is to manage the symptoms and get back to work. So i am reading and talking to others inflicked with the condition. So any suggestions would be greatly appreciated. I'm on a diuretic at this time; just started does anyone know about how long it will take to show sign that the meds is begining to work. Thanks Lee
Hi Lee,
You are doing the right thing, it is very important to learn as much as possible about this disorder.
There are quite a few medications that folks use with meniere's disease some help more than others.
Keep talking to your doctor about what options you have and talk to him about anything that you have read about concerning meniere's disease. And don't be afraid to get a second opinion from another doctor.
Stay in touch and let us know how you are doing.
David
David:
My friends and family call me the Miss Dizzy Princess! I wish that were a compliment. My first episode with MD was Dec 28, 2009.
I am a nurse and I have been unable to work since Jan 2010. I have been working since I was 14, so work is not something I am afraid of or have ever tried to dodge! Since being forced on this MD journey I have had to be placed on LTD from my job. The hospital I work for is afraid I may become dizzy, lose my balance, forget something...and cause injury to a patient or myself. Sent to a Neuro Pysch doc to test my memory-found it to be fine "just a little slow?" with my motor skills much the same;also told (after 7 hours of testing)I was very depressed, angry and anxious. Really!? You needed 7 hours of testing & $600 to tell me something I already know?!I am human!She & my surgeon told me to get a life,forget that I have MD,stop thinking about it;that chances are if I become dizzy at work or lose my balance someone would be there near by to help me & suggested I go into consueling. I felt as if someone had punched me in the stomach! I knew I was in a losing battle! Made me feel as if I were there to stand in line for disabilty payments and a free pass in life! No matter what I said to her I felt as if I were defending my illness! Would you do this to someone with a diagnosis of hypertension or breast cancer... I am so sick of people saying to me:"you don't look sick" or "if you can't work at the hospital can't you do this or that..." What employer will put up with, let alone hire someone who will most likely have to call in sick to work more times than they would be at work? or someone who will without fail, lose their balance everyday and risk falling? I am so tired of feeling as if I am being judged because you cannot "see" my illness.
Ive been homebound x 5 days due to a horrible attack that has just been unrelenting.It is so bad now I can turn my eyes severly to one side & spin out of control! it is everything in my power to stay at this keyboard. I guess I sound bitter for having been dealt this, but I am not, I am learning to deal with the MD. There are much worse things and I know that God is good. My husband has MS and is doing well and can work-PTL! My biggest hurdle is me and feeling as if I have to "convince" those folks of how bad my MD is & limitations it causes.
Thanks for allowing me to vent!
Miss Dizzy Princess
Hi DP,
I certainly know how you feel and probably everyone else who has md gets the "you don't look sick" comments. I have glad that you seems to have the right spirit to fight this because this disorder can really drive you down and make you feel that nothing in life is worth the trouble that meniere's gives you. but you have to fight on and don't let it beat you.
hang in there and i am so glad you commented stay in touch
David
I was diagnosed with MD 5 years ago though the tinnitus started years before that.. I have been through it all, the dizzyness, vomiting, noise so loud you can't sleep. But I have kept a positive attitude in the sense that though MD is life altering it is not life threatening and there is always hope..I think of those who receive the news of terminal cancers and the like and consider myself lucky. For one thing I am a much "healthier" person these days, eating and exercising. In the past year I have seen more focus on MD than I had in the prior 4 years which also keeps my hope going. I have controlled my MD pretty much through diruetics, exercise and vitamin protocol. Last year I took a cruise, flew in a small plane around Mt McKinley and hiked a 1/2 mile into a glacier. I refuse to let this stop me.. if I have an attack.. well I just get through it. I am lucky to have supportive friends and family who know what is going on and are there when I go down. Yes it sucks but I only have one life and I am not going to let MD stop me. When folks see me have an attach, I explain to them what is happening and about the disease. Most have not heard of it, so I look at it as spreading the word. Many have told me they know someone with the same symtoms but have never been diagnosed. I believe there is many more of us out there than the medical profession realizes. Hang in there.. I believe the work at Johns Hopkins may be a major breakthrough for all of us!!
Hi TM
It is good to hear that you aren't letting this disorder take over your life. keeping a positvie outlook on things really helps with meniere's and other things in life as well.
Stay in touch
David
It can be very discouraging when people don't understand and don't want to take it seriously. My husband and family have been very good for the most part, although sometimes my husband thinks I should be able to do more than I really can, and that does hurt.
And work can be worse... I've been doing a freelance writing/editing job for a couple of months, including immediately surrounding the time when I was having the surgery, and they just don't get it at all. It's been extremely frustrating.
I hope the rest of you who are having trouble with your loved ones can find ways to make them understand. Perhaps if they read some of the posts on this blog they would "get it"?
All the best to everyone...
Peggy
Hi Peggy,
i know exactly what you mean it can so frustrating when people around us don't understand what we are going through. Because it is a rather unknown disorder, most folks just don't understand what we are going through, unless they see us in an attack, even then not everyone is convinced.
thanks for commenting and stay in touch
David
Hi, David. I'm in a strange place now, since I had the labyrinthectomy a little more than a month ago, and am still recovering. Now, my doctor is testing my other ear, to make sure I don't have it on both sides, because my balance issus and mild vertigo continue.
But I had a stroke of good luck recently, and I hope it keeps up. I actually got a new job, one I can do from home for the most part. And it's a very good job, too. My only concern is that if my right ear starts misbehaving now, I won't be able to keep up, and I won't be able to do even the limited travel the job requires for client meetings and conference presentations.
So, as we move into Thanksgiving week, I have reason to be thankful, but also reason for apprehension. I hope everyone who contributes here and everyone who is wrestling with Meniere's Disease is doing well as the holiday season kicks into high gear.
Hi Peggy,
Congratulations on your new job! it is so good to hear about anybody finding a job in this economy, especially those with meniere's disease.
I hope that the meniere's doesn't go into the other ear. you have been through enough with the laby!
have a good thanksgiving
David
Thanks, David. You, too. :)
Hi David,
I have been diagnosed with MD for the last 6 years, but today (mid Oct 2010 - till present) is the worst i attack i'm having, i have to take sick leave for about a month now and my employer are thinking that i am just exaggerating because they don't know what MDn is, in my situation is very difficult as you see i'm part of the expat in Abu Dhabi, UAE, single and no family, im just so lucky i have my friends, but sometimes i feel so guilty that i am jeopardizing their social life because they have to take care of me. Now, i am forced to resign and go back to Philippines which is very sad cause i am a candidate for promotion which i am working hard to get it but i have to let it go.
The worst part is people commenting about it is just something "psychological".. lol.. i always reply to them, i don't wish for u to have a MD cause i know how hard it is and smile.
Since the last few days i have been praying constantly, praying for me and all the people who are suffering like me. I know we can overcome this. God is good. I'm entrusting everything to him. at the end of the day i feel i am still so blessed.
Every time i get dizzy i pray the Lord's Prayer, Hail Mary & Glory Be over and over again till it stopped. =)
It's nice sharing my story to the people who can truly understand. I will continue to pray for us.
Keep in touch and hope someday we can have a "DIZZY PARTY" lol.. (laughter is always the best medicine)
M
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Hi David,
I have been diagnosed with MD for 6 years now and my tinnitus is there 24/7 that it became a part of me, at first it irritates me because of the buzzing sound but then I get used to it, I usually have attack for 1 week or 2 then I get over it since last October of this year till today I’m having my worst attack, my friends always rush me to the emergency if I get dizzy and vomit. You can’t believe how many medicines I have (Beteserc, Nexium, Stugeron, Prednisolon & Brufen) for a Female single Expat here in Abu Dhabi, UAE it is double difficult on my side cause I have to bother my friends so much to take care of me, I’m just so lucky I have a very supportive friends and never leave me at this time. I have to give up my life here and my career to have a take a rest in Philippines, I have been out in the office for a month and resigning will be the best for me and the company. It is a very difficult decision because I am so in love with my job but at this point I have to think of myself first, my health.
Worse comment I had ever encounter is people telling me that MD is sort of something "psychological" I always reply with a smile and tell them I would never wish for you to experience this cause I know how hard it is.
I have to sacrifice a lot but I know this is not the end everything I just have to mend and take things slowly and have a complete change of lifestyle.
I have been constantly praying for me to get fit as well as all people who are suffering like us. But you know suffering is such a deep word for us to use compared to those cancer patient who are worse that us, for that I still feel blessed.
Every time I get the attack I’m praying the Lords Prayer, Hail Marry and Glory Be over and over again until the vertigo stops.
I feel good sharing my experience with people who truly understand my condition. God Bless us all and let’s never give up. Life is Beautiful and God is good.
M
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Hi Mimi,
Unfortunately it seems that the only people that truly understand what a meniere's attack is are those with meniere's disease. I know some folks just can't understand why out of the blue you become so sick. it definitely isn't just something in your head, its real.
I am glad that you have supportive friends to help you with this disorder you really really need support!
Keeping a positive attitude no matter how tough things gets is also important. It sounds like you have the right mindset and you aren't going to give up which is the best way to be.
Stay strong and keep in touch
David
I apologize if there are multiple posts...
OK. This blog is fabulous, and in an odd way, comforting. I’ll jump in…57 years old.
I was diagnosed with MD ~2003 (right ear, fullness, tinnitus, loss of low-freq hearing, and vertigo. MRI…no tumors). My son was also diagnosed with MD early, but he’s in his early 30’s and is doing quite well now. Hope!
Early on, my son would have the “drops.” He had 50+ days of missed school one year. I remember him flailing at the dinner table when an MD event occurred. Fortunately, I’ve not had that.
I’m fortunate at this point. I can generally sense it coming on (almost predict it – volatile weather, extreme stress) and can take an OTC like Dramamine or Tylenol PMs (though a little more than prescribed). These make me a little “loopy” and tired. At least, though, the “spins” aren’t as bad, or I sleep it off. I also take a diuretic. Antivert also works for me sometimes, but it’s a scrip.
I’ve missed too many family events since I didn’t want to go out and be left “stranded.” (I’ve got 30K miles on my 1995 vehicle; I sold my pride-and-joy 2001 Harley. Needless to say, I stick close to home, just in case.)
The noise, in between events, drives me nuts (constant…rushing, clicking, squealing, etc.). Additionally, it seems like with every event, I hear less in my right ear.
The surgical “remedies” seem way too invasive, risky, and uncertain.
Sorry if I seem like I’m dumping!
God Bless!
I’m glad I found this blog.
Tim
Hi Tim,
I know it must be rough having 2 people in the family with MD. I'm glad your son is doing better after a difficult start with meniere's. You seem like you have a good idea about what helps with your md and that is certainly important.
I'm so glad that you found the blog also and I hope you will continue to stay in touch and let us know how you are doing.
David
Merry Christmas, David.
Actually, my son lives in Va, so it's just me dealing with this.
The only issue is that it's difficult for me to work best when under the influence of the OTCs I take. I don't want to drive either when taking these meds.
I'm going back to the ENT to see if there's anything new to mitigate the spins without impairing my ability to perform at work and drive.
I'm looking for something that doesn't make me loopy, makes me safe to drive, and kills the dizziness. Not sure it's out there. Very frustrating.
On the bright side, most of this year was MD free; but November and December have been horrible (weather and stress).
I'll keep reporting in!
Staying positive. Peace.
Tim
hi tim,\
it sounds like you had a pretty good year. you have the right attitude about meniere's which is to continue to search for new products that might help. Be careful when you take something new!
For some reason winter is also a bad time for me, I guess its the cold air.
keep in touch and let us know how you are doing
happy holidays
David
I want to open a new subject here, related to understanding from other people and what we go through.
I've been trying to adjust to working full-time again, and trying to learn a new approach to what I do (research, writing)and I'm finding it so difficult I almost get paralyzed when I face something I'm not used to doing.
Does anyone else find that the fear of failure has increased for them? I feel now as if I don't know who I am, I don't know my limitations any more, and I'm frightened that my brain doesn't seem to function as well as it used to.
And I'm worried about how much patience my new employers will have. I'm terrified of losing this job and what it would mean to our lifestyle, but at the same time I'm afraid of what I'm trying to accomplish. I find myself sitting in front of the computer, frozen, afraid to even try. And when I do try, it's harder than it should be to process information.
So much anxiety I can hardly stand it.
Is this just part of the Meniere's picture?
Peggy,
it certainly is understandable that you are feeling the way you are. I also have problems with anxiety and I can believe that most folks with meniere's also have the same problems.
Hopefully you are just having some new job jitters that will eventually go away.
I know that it is difficult but try not to worry about failing. You will do fine.
Hang in there and let us know how the job is going.
David
Thank you for this site David
I have just found out I have Menieres disease which came on about 3 months ago. It started as just a pain in my ear with pressure followed by 1 month later waking up with tinitus and partial deafness all in my right ear. To say I was and am in some parts scared would be an understatement. As i am from the uk and on the NHS i have to endlessly wait for appointments which do not help matters. I saw an ENT specialist on the 29th december and I was told that I have menieres but strangely with no dizziness. I was fitted for a hearing aid and now have to wait till march to recieve this.
Last week I woke up and I felt sick as a dog and was very unsteady on my feet, I thought I had caught a cold or something like that, it eased off for two days then came back. I do not as yet have the drop attacks that I have been reading about but i am constantly dizzy especially when I lie down straight.
I have tried to fight what is going on and be pro-active but this is difficult as I believe my other ear is going the same way even though as of yet its just a mild pain. I hope it is all in my head.
Later today I am having my brain scan, and I will be having tinitus training in the future.
On top of this my pills for the dizziness are not working so I will be asking the doctor for betaserc as this seems to help many people. I hope this helps.
I am picking up a hearing aid tomorrow which I have paid for privately just so I can start to feel a little normal again and at the same time feel that Im doing all I can to deal with these issues.
I work for myself unfortunately and I have managed about a weeks work in the last 2 months. I am tired of feeling sorry for myself and I feel even more sorry for my wife, but she has been great.
On a positive note I have taken great heart from some of the messages that have been posted and they have given me some hope and options and I will try many. I have stopped the caffeine and reduced my salt intake.
My worries are the fact that all the doctors and so forth do not show any urgency for my ailments and I am staggered at this. I want to work and live my life but the support I recieve from these experts is minimal at best. I understand that they dont have all the answers but are they not there to offer more than this? I feel that unless i do research myself I will never get close to the road to recoverey. I will post again when I recieve more answers.
Does everyone feel totally helpless when they first discover this diseaes?
I will post again soon and hopefully I will be in a happier place.
Steve
Hi Steve,
unfortunately it seems that the only people who understand how devastating meniere's is are the folks that have it. I have also had doctors who seem indifferent to the problems that I have experienced. I just don't think that they truly understand how bad it is.
You are right that it does seem hopeless when you are first diagnosed with meniere's. It just doesn't seem like there is anyway to prevent an attack. however there is research and development of devices that look promising to help control and stop the attacks.
thanks for commenting and stay in touch and let us know how you are doing
David
Steve, is there any way you can look for a different ENT since you are on the NHS? I'm not sure how much latitude you have there to select your physicians.
My ENT is great... she really understands the suffering her Meniere's patients go through and is very concerned about the quality of life issues. If you can find someone else to work with, it could make a world of difference.
Meanwhile, this board is great for support, and there might be other support groups you could find online or even in your community. Try looking and asking around. You never know what you might find.
In addition, if you do a lot of research yourself, you can find information that will help you have conversations with your doctor that might be more productive. My surgery was performed differently because of information I found online. I told my doctor about some options she hadn't heard of before, and she altered her plans a little as a result. Be a pro-active patient. It's your life, and this is so important. I can really empathize with how you are feeling.
Be your own advocate if you can, and come back to this board for moral support. There are people who understand... you just have to find them and keep talking.
Hang in there...
Thanks for the reply Peggy!
I'm curious: Has anyone who suffers from Meniere's on this board gone to see a therapist? I'm considering it to try to get a grip on the depression and anxiety, but I'm wondering if I would have to spend the first month's worth of sessions explaining what the hell Meniere's Disease is and just why it's wreaking such havoc in my life.
If anyone else is seeking therapy, what are you looking for in the therapist? Have you had any luck with finding someone who "gets it"?
Bad news... I lost my job last Friday. After struggling with the 3-month probationary period, it became apparent that I wasn't going to be able to learn to do what they wanted me to do. However, I'm fairly certain that if they had done more to teach me the new skills and knowledge I needed for the job, things would have turned out very differently.
I do blame Meniere's for this, in large part. If I had not been through a year of severe illness, my confidence might have been in better shape. If I hadn't had the surgery in October, I might have been stronger when I took the job in November. If my employers had understood Meniere's, maybe they would have been more willing to work with me, because I think I could have grasped what I needed to do with just a little more help on their part. But because I "look" normal and for the most part behave normally, they didn't understand the real problems Meniere's patients face.
But it is what it is. I am unemployed again, trying to figure out whether it's time to apply for disability. Right now I'm not even sure what I can actually do, in terms of a job. And I don't know how to get my "mojo" back. Staying positive has never been so difficult.
Hi Peggy,
I hate to hear about you losing your job. unforunately most folks don't understand the trouble that meniere's can bring.
try hard to stay positive although I know it is tough.
Hang in there and stay in touch
David
Thanks, David. This experience has been a real eye-opener and very disheartening. I have an appointment with my doctor in a little over a week (follow-up for recent problems and treatment) and will talk to her about my options with regard to disability vs. work. I'm not sure now what, if anything, I can realistically do. But I appreciate the moral support.
this illness is really disabling.
reading some of these posts is really interesting as it brings home the reality behind menieres disease.
if you lose a leg they put you in a wheel chair and you can get from a to b.(not saying that losing a leg is fine)
with menieres getting from a to b is vertually impossible, on a daily basis.
hence your love/work and social life is turned upside down.
everyone one of us is on different kinds of medicines which is funny. it shows the docs dont lnow whats going on. as some people stated medical science has been able to achieve so much, but in this one area they are still on the stone ages.
i live in london. does any1 know of any support groups, local.
also david you should do a blog of medicines that people are on and we list what exactly we take. would be interesting to see the list, could be very helpful.
thanks for this page
ali
Where do all you people live? When I go to the mountains to ski, I feel GREAT! Is it the altitude or the lack of stress? I'm just curious about where in this world is the best place to live with this. Missouri has so much weather fluctuation. And I can always predict a storm 2 days before it's here because all this gets worse. Can anyone else do that to?
I feel bad for my family. My kids and husband have to watch me struggle with this. It SUCKS!
For the thyroid post, I just started thyroid treatment last week. Will keep you posted.
I don't go out much at all. It's too hard to deal with. I've had loads of therapy. It helps.
Please do the blog about medicines.
I live in New Jersey, not far from the coast. Like you, I find that fluctuations in the weather have a terrible effect on me. I'm almost nonfunctional when it rains or when it's windy or snowing. It's horrible. Really, I'm only OK when it's a still, sunny day.
The theory, I think, is that barometric pressure has an effect on the inner ears, which makes sense to me. The big question is how to counteract those disabling effects?
It's interesting to think that high altitude might make a difference. I lived in Denver and Boulder, Colorado, when I was in my 20s and loved it. Perhaps I'll go back someday and feel some relief from my symptoms. ;-)
I live in Pgh, PA. and the weather plans a big part in my MD. I have had MD for going on 4 years. I have found so far for me the meds. do not help. My chiropractor has helped me the most through diet and supplements, this does not mean I am system free, I am still motion sick a least a few times a week, but I have not had a drop attack in a year, and have not spent 6 hrs. on the floor sick as a dog in almost a year. For me I can be just sitting doing enough and get motion sick. I no longer drive something about going 50 miles an hour and all of a sudden getting sick was enough for me. I stay at home, where I feel safe. Waiting for someone to find a cure.
Its a small world I grew in Uniontown Pa about an hour south of Pittsburgh! That is interesting about finding relief with a chiropractor. many folks believe that supplements do help although personally I am not so sure.
stay in touch and let us know how things are going.
David
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