My Doctor Warned Me!

Great post Andrew.

Though my symptoms are preventing me from living a normal life at the moment. I can feel an underlying "F** this" attitude starting to boil under the surface. I feel that im about to punch my way out of this whole ....I hope to anyway.

My mind is powerful, and it consumes me at times. An analytical determined mind can be a gift, but I know alot of the time mine does me more harm than good.

I guess there's alot of truth to the saying "ignorance is bliss". I had meniere's for 4 years prior to a diagnosis, and even though I wasn't functioning at 100% during that time, I definitely wasn't quite as fearful of all the what if's' prior to the definitve diagnosis. Granted MM hadn't progressed quite as rapidly during that time, particularly balance issues, but now knowing that vertigo could strike hard and fast at any moment can be like living in a prison cell.

I might look at getting that book you mention. I resent how people believe that there is a psycho-somatic link to meniere's. It infuriates me to be honest. But I can definitely see a link between the mind, and how thought process can inhibit us.

 

great post Andrew!

 

Now here's the flip side...
What if the hypothesis that Menieres is irreversible is the delusion? To support this theory, I followed my Doctor's advice to 'learn to live with' my suffering, but I kept getting worse. So I went back thinking surely now he would do something (now that's delusional!)...but naturally he said the same thing.. as did the other Specialists I visited. But I STILL kept deteriorating. Till eventually I was bedbound and so severely ill that living with it was just too hard. So what then for people like me?

As I saw it, I had no choice but set the opposing hypothesis that I could alter my condition. And that's precisely what happened. Even my hearing returned. I now have the evidence that backs my hypothesis... just cause I stopped to look for it! So it bears keeping in mind that the power of delusions work both ways.

I wish people would do far more for their health, because I have seen the power in this approach over and over again.

Lee

 

Lee i was always read your posts with interest about how you got well.

Maybe you could start a thread explaining your whole journey to 'wellness'. I know that I would definitely love to hear it, and im sure many newbs would too.

You may have told it 1000 times before the crash, but many of us haven't heard it, apart from bits and pieces. I know the fact you stopped fearing it had alot to do with it, but I'd love to know what else.

Either way, it's cool. But yup, would love to know how you went about it.

 

Cheese, I'm so determined to explain my theories to anyone who is interested, that my husband worked away from home to pay the bills while I wrote it all up. So far it's taken me 20 months of writing/editing/illustrations etc. (and that's after the research phase). The process made me realise why I was having trouble explaining it all in short post form.

The trouble is, most don't think it's possible. So there's no point me explaining the strategies before at least attempting to convince that it most definately is. This was by far the hardest part... and took me 50 pages of 'evidence'/logic.

So Cheese, I am doing my best. I was almost burnt out years back trying to explain just a few ideas on the older forum, as I hit some violent reactions. It's hard to have a different opinion. I'm trying my best to make sure I get it right.

Lee

 

I understand, Lee. Everyone can be a cynic at times, and it would become disheartening. I'm a massive cynic, I can't deny that.

Still ....even if you just started a thread explaining your 'mindset' to becoming well, much like this thread, i think it would benefit a lot of people.

I love this forum, but sometimes I feel there aren't enough hopeful posts. That has A LOT to do with the nature of the beast though. The disease can be relentless, and it can damage your core sole to the point where you become a whithering mess. The relentless nausea, and tinnitus strips us/me of all hope.

Anyway....It is really up to you. I respect your decision either way. But yes, I would love to just hear about your 'mindset' to becoming well, not necessarily the process, though I'd like to hear that too.

 

I have been told so many times in my life that some health condition was "in you mind--just deal with it" that honestly I cringe even going to the doctor now. I do understand how things can affect you if you think they will--but so much hits me out of the blue when I'm NOT looking for it and when I'm out living my life.

I have decided that MM isn't going to get me down permanently. It can take me down for days--but I will NOT stop shopping--even if it means having a drop attack in the store. I will NOT stop working unitl I am forced by my boss to do so. I will NOT stop eating out--I can't find that trigger with sodium--I'm sure it is there because sometimes when I eat out I get a really bad attack but others I can eat at the same place and the same food and there is nothing. {I do try to limit (not cut out totally) my salt intake at home.} People with allergies should stay away from those things they are allergic to.

I guess what I'm trying to say is PLEASE don't try to put a blanket statement out there for people that it is all in their head--with MM it IS in our heads!--but it isn't necessarily because we are thinking it will be. Most of my attacks come "out of the blue".

Maybe I'm missing the whole point of the post and if I am please forgive me. But honestly the "just think right and it'll be ok" attitude really gets under my skin because of my background with the doctors.

By the way, in EVERY case so far when a doctor has told me to just learn to live with it--when I kept trying to find an answer because I knew something was wrong--there has always been an explanation that another doctor has been able to find and generally fix. MM was the first that can't be fixed--but it took so long to finally get a doctor to do the right tests because others just said, "I can't find anything wrong--just live with it." Now that I know what it is I DO have to live with it--but at least now I know that it is real. I can deal with "real" but not "live with it."

Sorry again--I don't mean to offend--just had to vent some.
Willie Marie

 

Sooo. . .getting sick is our own fault?

I know. . .I'm being a butthead. But like the previous post I get twitchy with the "you think it, therefore it is" philosophy of illness. Chronic or otherwise. This twitchiness has roots in events in my life which are inappropriate to discuss here.

OfficeCat

 

Hi Cheese, I just wanted to say that the book I mentioned is not a self-help book. There really isn't anything to "apply" while reading it. It's more just informative on how our brains work, how we protect the ego at all costs, form opinions on very little evidence, then ignore evidence to the contrary to protect our initial impressions to the point that we will even alter our memories or make things up to protect our self-image. I find this stuff fascinating.

Hi Willie Marie! All venting and opinions welcome of course! This is a forum after all. Just to be clear about the nature of my initial post: it was not to suggest that MM is "all in our heads." It's very real and none of our symptoms are imagined. However, the mind is a powerful thing. I can sit here right now and think about vertigo and start to FEEL vertigo. As far as doctors telling you to just live with it, for shame on them. I agree that's not an appropriate response and thank goodness no doctor has ever told me this. They have shown interest, concern.

The ENT who told me to be careful not to attribute vertigo to anything specific (he was talking mostly about physicial activities I believe but this was five years ago and I've changed insurance companies so many times I no longer even have an ENT) also give me an EAR VIBRATOR! No kidding. I tried it out. I placed this vibrating thing behind my ear held down by an elastic band twice a day for 20 minutes. It didn't end up working but this Dr. would have me try anything if he thought it would help. The second thing he did for me was prescribe Valium. That's really what gave me my life back, broke the cycle of panic and vertigo that gripped my life.

So while he gave me advice I could live with, he also prescribed drugs and gave me a vibrator. Pretty good doctor, huh? All kidding aside, if he had just said, "Go about your daily life as if nothing was wrong," and showed me the door, I wouldn't have posted this topic and I probably would be confined to a bed.

For those who have found their triggers I think that's more than fantastic. And I certainly don't want to persuade others from searching for theirs. Not my business or intention.

My intention was more about pointing out a general attitude that has helped me. It's not something that will help everyone. Five years after my second ENT told me to try not to attribute any one attack to any specific trigger (he did not use the word trigger, BTW) I was reading this book I mentioned and found lots of evidence pulled from various experiments that we can't always trust our brains to always form sound opinions or come to sound conclusions because our emotions and ego get in the way.

That's all. Food for that (the low-salt kind, of course)!

Everyone has to find what works for them. Recently I've been substitute teaching to 3rd and 4th graders! That's certainly not something I would have thought possible when I was first diagnoses five years ago. Sure I take a Valium just before I leave for school and one at lunch time. So far I haven't had a vertigo attack. Haven't had one in ten months I think. And I go weeks between needing to take Valium. But I'm glad to know it's there. And don't think I'd be able to deal with fifteen screaming, playing, laughing, crying, 4th graders without it.

Lee, it's good to see you on the boards again. And after you finish writing, editing your book, I would love to read it. I'm sure I could learn a thing or two from your experiences.

Andrew

 

here's a wrench for the works......

I didn't even know what Meniere's WAS......

how could I think it when I didn't know it existed?

Didn't stop me from getting/having it........

 

Just making sure no one thinks my post was about "it's all in your head." I know too well how real all of our symptoms are. Read my longer reply just above Sunrise's comments for more explanations of what I meant.

Take care!
Andrew

 

You are so right!

I went misdiagnosed from July of 1997 to November of 1999 and in that time I became a couch potato while the anxiety of the vertigo left me feeling helpless. Thankfully, I kept plugging away and refused to be put into a mental institution which I am guessing happens more often than not with Meiere's. I went through 21 doctors before I got to a doctor who actually sat down with me and had a conversation. She explained to me that doctors give patients 5 minutes to explain themselves and listen for key words. I kept using the wrong terminology. I was never sick or injured before this so I did not know what I did not know. A person really has to keep focused and not let this disease play tricks on them or drive them nuts!

Chris

 

Good post, Chris. Thanks!

 

Your doctor is right in that we should live our lives and not allow this to make us invalids. It very easy to do that. And the people who will do that with this disease as an excuse will probably do it with some other disease as an excuse.

However, your doctor is wrong in stating that this episodic and there is nothing we can do to control symptoms and that we should quit looking for answers that will delude us. If the world had followed this advice with stomach ulcers, many would still look askance at people with ulcers as misguided individuals who have trouble controlling their anxiety levels, instead of understanding that it is a simple bacterium causing the ulcers. The same coin, same side. Is it pure coincidence that so many on here had their Meniere's episodes stop when they got skeletal/muscular therapy and so many others' Meniere's episodes stopped when they started on anti-viral therapy? If I had followed similar advice from my otoneurologist and 'learned to live my life to the fullest possible with this' I probably would still be lying in bed three times per week puking my guts out for five hours.

I think there are two distinct concepts at work here that are not mutually inclusive:
1 - learn to live your life to the fullest despite your particular hardships
2 - stop looking for answers to something that (TO DATE) has been unanswerable

I agree with the first, but not the second.

I also think it is a matter of degree: It is one thing for a doctor who has never had vertigo or other Meniere's symptoms to make that kind of statement. And for people who have attacks periodically to look at this disease as a minor and occasional irritation and another for those who are bedridden 60% or more of their lives to accept the 'live your life to the fullest... forget it.. it's episodic and idiopathic' philosophies without trying to find causes and make corrections that help manage the symptoms better and make life at least 'livable'. When you have three or more attacks per week, there is about a 50% chance you will have an uncontrollable attack at the theatre or symphony, in front of the rest of the parents and children at your child's school, in aisle six of Giant Eagle...

Gee, can you tell where I fall on the 'accept whatever the reductionist thinking Western medicine gods tell us' continuum? I go back to the simple allegory of a car. If you put junk into it, it will sputter and stop running, miss, and backfire. Yet, western medicine doesn't even address what we put into our systems and how what we eat and breathe and drink affects the workings of our bodies. They don't try to look for the things that affect the system that can lead to problems like Meniere's... like the H pyloric bacterium.

Thanks for 'letting' me vent a little on this one
SpinininOhio

 

Bravo Spinin!!

 

Thanks for your great comments, SpinninginOhio!

Tamara

 

Very thought provoking thread Andrew :-\ and I am still thinking :

I have to try and put it into my perspective, that is, one whose life is now (but remember I had long remissions) almost completely disabled by the beast (balance and hearing wise) and who if I don't "adjust" thingies ??? to adapt then my life is soooo much harder..uuuuuuuummmmmmmmmm

Bit too hard for the fogged out brain to cope with a the moment

Maggie

 

I believe advising a Meniere's sufferer to 'learn to live with it' is a little like advising a person who has had a heart attack to just keep doing what they always did in the past. There is then nothing to stop the deterioration.

Trouble is, most have to get very ill before knowing they have no choice but take some action... despite what 'expert' others may say. Those experts don't have to live with the suffering.

Lee

 

Lots of great points Spinning. As far as Western medicine missing the boat most of the time, AMEN to that! If the drug companies can't see a profit in manufacturing a drug, forget it. Cinnamon is supposed to be great at regulating blood sugar but no doctor will tell you if you have type 2 diabetes to start eating 1/4 teaspoon of the spice because it's not something they can sell.

Lee, as i said, I look forward to reading your book about how you beat this thing. I just was to re-iterate that my ENT never said "learn to live with it." He's the one who gave me the ear vibrator and prescribed me Valium! He would have me try anything if he thought it would help. He was just suggesting to be careful to not to attribute particular attacks with things you are doing at that particular time because it might not be the cause and you could end up limiting yourself unnecessarily. I might be back pedaling here and using less strong language. I don't remember exactly what he said because this was some time ago. And like I said, this has worked for me, but obviously not for everyone, not for those who get vertigo attacks daily or many a week.

I've tried many of the diets talked about here and many of the supplements. I do take lemon bioflavoniods and watch my glycemic index. I think many of us (I'm not one of them) have dealt with Dr.s and family and friends who are not sympathetic and don't believe our symptoms when we describe them. This then puts on us guard against a Dr. suggesting that we might be wrong when we think we've nailed down a trigger. I am not suggesting anyone is wrong if they think they've found a trigger, BTW. More power to them.

Anyway, I won't beat a dead horse here. If I was bed ridden, I'd be looking and looking for an answer. I happen to be lucky enough to be functioning at a pretty high level so I'm upbeat and don't worry about finding triggers as much as I did when I first was diagnosed five years ago.

I'm not here to change anyone's mind. After reading this book I realize that's basically impossible! I'm just posting another point of view that people are welcome to dispose of if that's their wish.

Peace and less ringing for all!
Andrew

 

Maggie, I'm so sorry you're going through a hard time right now. I wish I could help in some way, as we all do I'm sure. Maybe the fact that you once had remission means you'll get it again? Here's fingers crossed you feel better soon.
Andrew