scary internet

Like most of you, I've done a bunch of research on the net. Sometimes way too much. It gets to a point that we begin to feel we know as much or more than some specialists and it is possible that in some cases we do. However, it's become clear to me recently that internet research can be counter-productive if it produces undue anxiety.

A lot of the sites (be they on MM, psychiatric conditions or muscle pains!) are chock full of the most intractable cases, of the worst case scenarios. Reading some of these sites you go away thinking you're a walking time bomb, just ready to explode with the most awful symptoms. Yes, some of us have very bad symptoms - but many manage them and many have symptoms that are not nearly as severe as those described on some sites.

The same thing holds true about medication: all we tend to read about is the awful side-effects of this or that drug, of its potential for dependency. Sure, these problems exist but the chance of encountering them is not high. I know from my own experience that I was prescribed a drug and it took me two weeks to gather the courage to start taking it - all because of negative stuff I'd read on some website. Then, when I started the drug, nothing untoward happened and the drug worked very well.

I'm all for research and will continue to educate myself whereever and whenever I can. But I think we should all read some of these sites with "a pinch of salt"...ooops, make that "a pinch of lemon-flavored salt substitute"

George

 

George,

Boy do I agree with you. When I first got sick some 5 years ago, i was reading every day. I must say though that I ruled out alot of things by asking the Dr's to test for certain things. I feel that this was a good thing otherwise it would have taken much longer to get my dx. The flip side was it filled me many times with anxiety when I would read some of the more deadly things thinking it could be me. I think you bring up a great point

 

How right you are, George!

I call it knowledge without wisdom.

We all need to be careful before jumping to conclusions, especially if they affect others. One of the signs of a well educated person is that they know their limits.

Joe

 

There was one drug that I took that done harm.It made me a diabetic and it made it hard for to get up and do things.I no longer take this medicine.I wasn't scared about taking it or anything wasn't told about what would happen if I took the drug.I just ask more ? about the medicines they give me.

 

George - how right you are!

Joe - very well put!

And if Nassman is reading this, it's exactly what he has been saying in his own unique Nass style all along!!!

 

Too true. The other thing I find is that when you try to 'research' something now, there's a 101 sites trying to sell something.

 

ok , so i have been on lots of sites and yes they scared the beejeebees out of me. i have only benn dx sience aug of 06 had my daughter in sep. of 06 , And of course i would be married to a marine and have to deal with military docs, no offence but these people have to get everything aproved, Like at first they wanted to do a scan to see if i had a tumor and that had to be approved , ( HELLO ) " he just said TUMOR" i just got sent to a ENT doc , had my first appt last thur. ooo and btw I HAVE MANIERS....I was thinking ok i knew that, but then we set up a new appt for me to have a hearing test, I think its like this if they would reaserch half the stuff we do then the important stuff would get done quicker, i have 2 kids and a husband that is not always reachabl and not too many people to count on in cali , all our family are back in Missouri.I am just beside myself thinking about all im going through and all that i have read unlike most on this site im only 27 yrs old this has already been life changing for me, i smoke i have otstop that but there not handing me a patch or anything for that, ooo and stop eating what i have eaten sience i could chew......There are times that i just sit and cry and it dose make me feel better, ok so now im venting , but it is true that the manires websites are scarrrryyyy, and to think that im already a manority as the docs put it , I just keep looking for more sites , in hope to find one that is sorta going down the right track with me , my synptoms, my life, something to help Me, well and in hopes that these sites will help others to , I dont know but something needs to help us and i can tfind much of anything, ooo and by the way has anyone heared of menier's going away????????


thanks for reading , i love to vent
Tera

 

Hi George and all--
My first 2 months with this I was riveted to the internet, trying to figure out what what was what. And as we all know with MM its a doubtful maybe, everyone is different, there are remissions, sometimes not, etc, etc. The tinnitus site used to bother me more than anything--people were ready to commit suicide over their noise. In my by then clinically depressed state,
I was scared to death--there was no where to go to get away from it and I just couldnt cope with it. Being on the net consumed me.

Well, I got my husband to disable it. He taught my 2 kids how to turn it back on when they needed it. Talk about a wake-up call.
The only site I go to is this one. I sit here with my head buzzing way, oh well.
My hearing is pretty good today--thats great! I'm going to a party with my husband tonight.
Thanks to the help I sought out, the passage of time, and Lexapro (which I almost didnt try because of horror stories on the net) and great counseling
I am getting--I have Meniere's and Meniere's doesnt have me. I no longer ask to have the 'Net forcibly turned off--I've read all the good and bad news.
With disease no one knows, right? As others have said--"the "what-ifs"
The net can make you too scared of those.

 

You read my thoughts!!

 

I figure it all comes down to balance, in getting the whole picture. The internet has been valuable beyond words for educating me with so much of what I would never get at a doctor's appointment. For example, I can find out ahead of time if a medication has dairy products in it, as that will set my meniere's off viciously, and most medications have lactose in them, and that is something I never learned from a doctor's visit. I also learn ahead of time of options to take to my doctor for discussion, as many drugs aggravate a sensitivity for heart beat irregularities that can flare so easily. I found my promethazine (phenergen) in liquid form, the doctor didn't even know it existed to offer it to me, instead of going through an expensive compounding pharmacy to make up promethazine capsules without dairy products.

We just need to be cautious and explore a number of sites on the same subject to see what the overall information is so as not to be alarmed or swayed by one opinion.

And of course this forum has taught me more and given me ideas to try and research for my benefit that I would never have gotten otherwise. I've learned so much. I've never been quick to get alarmed or swayed in any one direction so sifting through the info has been more beneficial than not having it available. And I certainly won't let any one opinion direct me, even if it's a trusted doctor, so that's where the internet has been great.

A good doctor will welcome your research for discussion.

George, your last words of advice are wise, "I'm all for research and will continue to educate myself whereever and whenever I can. But I think we should all read some of these sites with "a pinch of salt".
We do need to be careful in order to get the best out of the internet.

 

The net is only as scary as we let it be. There is a lot of good and bad information on it, we just have to learn how to discern the good from the bad. I do not read every article that comes along, nor do I believe most of them. I have found that forums like this one offer a lot of valuable infomation and either confirm or conflict with what I have read.

I feel grateful to be one of the lucky ones without severe symptoms from the disease. I do have the usual symptoms, with occasional vertigo, but have never had to hug the toilet or had severe vertigo lasting for more than a few hours. I have had weeks with vertigo daily but not constant vertigo.

We have to realize that the worst case scenerio is most likely not going to be ours. Keeping informed is great and I love to read the success stories and feel for those that have major trials with the disease. I have read Sullivan's posts with great interest but do not have much faith in chiropractors (although my wife had been going every two weeks for the past year and 1/2.) She finds relief from her pain, but the few times I tried, it seemed to make no difference. I have tried some of the the supplements in John's regimine, but never kept up with it. I tried diuretics but they did not help. The specialists that I saw seemed not to care, so I just treat myself with a good diet and exercise and it seems to keep most of the symptoms at bay. I still have a little tinnitus and some major brain fog at times, but can function very well.

I do not drive, and working at home is a blessing. I have looked into the glycemic index diets, but love my carbs, but I have cut back on them too. I find the information from others that suffer from this disease to be the best. I do read some of the link that they provide, but take them with a grain of salt (never had a problem with salt, and usually do not use too much either.)

We just need to be aware of what we read and how it applies to our situation. We do not need to assume the worst, I have read about others thinking about quitting school or avoiding relationships because of this disease. I find this depressing and down right silly, each of us has enough problems, and we do not need to let it control our lives more than it already does. Sitting back and saying "what if" does not help. What if we tried more and try to help others? I think feeling sorry for ourselves just makes things worse.

I am not greatful that I have Meniere's, but I do not let it control my life either. I still do almost everything that I did before and the more I do the more I find out that I can do. If I took the worst case scenerio, I would refuse to do anything except "give up and die".

Linda and many others seem to deal extremely well with this disease and are very uplifting and helpful. You can not help but to feel the concern and love that many here have. I can think of many, but will not list them all. I do not want to exclude those that have offered a kind word, hope, a listening ear, solice and love.

I think being informed is necessary, but we have to remember that all we read and the worst outcome of this disease we most likely will not experience. We need to cherish the good times and learn from the bad. We need to have compassion for those that are far worse off than we will ever be.

Too much research... I doubt that any of us have reached this stage, believing to much of what we have read, that is another story. I think that human nature causes us to dwell on the negative. The negative can make us worse, causing fear and depression, feelings of worthlessness, and doubting the future. It can cause stress which could end up being worse than the disease itself.

We need to know that we will not be to worst possible scenerio... Keep informed, but remember that all the worst is not ours. Many of us live happy and productive lives and will continue to do so.

Best wishes and thanks to all.
Kelly

 

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to be honest. I can't stand the menieresinfo site ....or I should say, the administrator who maintains it.

Here's a gem from his/her blog.

"Meniere’s Disease is progressive — it gets worse over time. For some patients, the worsening is very gradual. For others, the progression is quite dramatic. One never knows when one will suddenly worsen. One never knows when one’s progression will suddenly slow."

It might be truthful, but geez. This in response to an "ask the editor" type question. I wonder how the person feels who asked the initial question?

He/she also loves pounding out this line at every available opportunity

"Meniere’s Disease has no known cause and no known cure. Meniere’s Disease never “goes away,” and it is never cured. Once one has Meniere’s Disease, one always has Meniere’s Disease.

Considering he/she or anyone else for that matter has no Idea of the molecular or mechanical process that contributes to the disease. How can they say this with such 100% conviction?!

There might be a lot of truth in these statements. But I still avoid this this site like the plague due to the amount of anxiety it causes me. Each to their own though.

 

...The only sites that I that were trying to scare anyone was those who were tryingto sell something or are radicals and they'll do and say anything to get you to buy. Even try to make you think it's a matter of life or death. In my many searches however, I finally zeroed in on PubMed, if I wanted to read the straight scoop. For instance MSG: there are sites that claim MSG is the spawn of satan and blame every disease under the sun on it. There's also pro MSG sites. I have found MSG to be a trigger but that's all. And the only real reseach I saw at PubMed was that they use MSG to fatten lab rats.
...I still use google if a keyword isn't getting any hits at PubMed and the same search on google will usually result in some other names that can be used on pubmed toget more fruitful results.
Rick

 

I feel exactly the same: I stay away from that one, yikes!

Also, a lot of sites - even some that have solid science - dwell on the worst case scenarios. It's best to avoid the anxiety this produces but without giving up the necessary research. I'm trying to be very judicial in my approach to internet research - a tough task sometimes

George

 

i agree. how can it be subjective when there telling you that they're product will solve all your problems. the one piece i found quite accurate is the report you can look up from the Maryland hearing and balance . its a no bones report about the major symptoms and treatments. its all facts. the treatments and pills and vertigo rehab that the other sites give , well ,buyer beware, is all i can say. as for scaring people. thats what this society does and has done for as long as i can remember. advertisers do it and so do our leaders and the media. if your christain/religious the only thing you should fear is God. i wake up in the morning put TV on and i'm supposed to fear bird flu, terrorist, iraq ,iran, china , north korea, flying , eating ,crossing the street, driving, gaining weight , smoking, global warming etc. etc etc. i can go on and on and on. i even watched this moron on tv i think his name is Glen beck, you watch one episode and your convinced the world will end tommorrow. with chicken littles like this running their mouths i'm surprised there any faith at all left. the point is without love and faith the world might a well be dead any way .

 

Well said.

 

Just looking at this thread and reading the responses, it made me think of a few things that I thought worth considering.

Do we want the truth about the disease or do we want things white-washed and prettied up? There is no known cause and no cure. If you have it, you have it and it isn't going to go away. ??? ??? Too hard to swallow? Maybe!

Unless more research is done, we are living with a chronic condition that yes, progressive in nature but won't kill us. For many it makes life a temporary living hell (temporarily), for others a cake walk.

I would rather have the truth than get things is small bites before we get to the facts. If we know our enemy we are better able to manage it, learn to live with it and get on with our lives.

What I don't like is those who offer false hope by trying so many things that don't work and if you really do have Meniere's disease, it is there for keeps. We throw money around on so many leads hoping for a magic bullet, magic feather or something. It is a permanent chronic condition. If you were correctly diagnosed, you won't have it clear up and blow away and all hearing restored and the balance function working again and no tinnitus. That only happens when you actually have something else that was not Meniere's at all. Harsh or the truth??

This discussion reminds me of an old movie about those astronauts who faked landing on Mars (Capricorn One) where two astronauts were trying to cheer each other up by telling jokes while climbing a cliff. They were talking about how to break the news to someone about their deaths on the fake mission to Mars and landing. This is the joke quoted from the text:

As I remember it one brother, Mike, told another brother, Brian, that Brian's cat had died. Brian was very upset and said that Mike should not just blurt out horrible news like that but that the news should be related in a sensitive manner. Mike asked what he meant. Brian explained that Mike should have said something like:
You know your cat Claws, Brian? Well, it got out of the house the other day and was roaming around the yard. When I went out to get Claws he ran up a tree and I had to climb the tree to get the cat but the cat went way out on a limb and finally jumped onto the roof of the house. So I had to get a ladder and try to get the cat off of the roof but when I went over to Claws the cat it ran over to the edge and jumped up on the telephone pole and started climbing. I tried to climb after it but it climbed all the way to the top of the pole and I had to call the fire department. When they finally arrived they got their big electric ladder and hoisted a guy up to the top of the telephone pole. The fireman maneuvered close to the telephone pole but the cat was really scared and started to back away from the fireman. Just as the fireman was about to grab Claws the cat slipped and fell to the sidewalk below. The firemen rushed over to the cat and administered all sorts of resuscitation but despite their valiant efforts they weren't able to save the cat. Claws was buried later that afternoon in a wonderful, touching ceremony in a nice shady spot in the back yard. Now THAT's how you're supposed to convey bad news.
So Mike responded by saying, "Well, Brian, you know your mother? Well, she got out of the house the other day..."

Well - you see what I mean...or not. ??? We can get it in small doses or learn as we go. I guess it is up to each of us to decide what is acceptable and what isn't. Being a former medical technician and having a husband and many friends who work in medical areas, I prefer to know straight up what is wrong, what can be done and if there is a cure, is, it fatal and what the prognosis is.

My Dr. knew of my background and my access to information from other sources and he knew I would do my own research before I jumped into a treatment protocol so we worked together on what my treatment options were and which were acceptable to me.

Some want to be spoon fed and others want the whole meal at once. That only makes us different not right or wrong.

We just need to be level headed when it comes to our own research and use reliable references. I have a Merck manual - that is a hoot. I could imagine all the symptoms of everything imaginable there. I remember working for a while in a lab and seeing worms and other stuff that crawled around in some people which had been extracted and imagined having all those things. I got perfectly freaky about scrupulously cleaning my hands and afraid to touch things for a while thinking I was going to catch a parasite. Yikes!! I had to level out and keep my wits or go out of my mind. Looking back it is all very funny now.

Oh well - carry on - I just thought I would add my own two cents worth. (FWIW) : :

Meneires information from VEDA and WUSTL are both good. I provide you with both. http://oto.wustl.edu/men/ VEDA http://www.vestibular.org/

 

I think I was remarkably fortunate when I was searching and "googling" vertigo... I found this site-- or clicked on this site, rather-- from a large list of choices-- and found several voices of reason. Lots of perspectives. And lots of thoughtful, considerate, experienced, "stuff" being discussed. It was "kismet" almost-- I was VERY fortunate, as I was pretty freaked out to be flat on my a$$ with vertigo so much of the time with NO end of it in sight.

... the only time I got in "trouble" was when I "googled" "acoustic neuromas," as I was scheduled for my MRI to rule them OUT. Oh dear... I FREAKED. Only because, my doctor had said, "Well, if that's what's causing your vertigo, then they can be removed and the vertigo will stop." He was hopeful.

YIKES! I totally freaked when I read about the surgery to remove them...

I called my doctor's office, I was a MESS! I posted on the boards here and within MINUTES several calming reasoned responses appeared. I have never forgotten that sane COMMUNITY OUTREACH and you folks have been a HUGE part of my healthy lifestyle ever since!

 

Okay, so answer a few questions for a newbie:
1. Is Meniere's forever? I thought my doc said for some people it eventually goes away - that brain-reprogramming thing.

2. Does it always get progressively worse? I know 'always' might be too strong, but can somebody tell me, like, 1 out of every ... 20 cases will get worse - stats info like that. I know I'm trying to have someone predict my future, but it'd be nice to know realistically what I might be facing with this.

3. Is hearing loss inevitable?

I'm not the type to panic. I want to find out as much as I can, then deal with it. Heaven knows (literally) there are many other people who have worse things going on and they live happy, productive lives. Guess I'm just a cup-half-full person at heart.