Do we suffer needlessly

I have this question for all to consider.

It is memorial day weekend and my redneck friend from Alabama is down for the next 3 days in Fla. With me. He has no inner ear function and most know his story. I will not re tell it. He basically came from wanting and almost committing suicide to living life like a 20 year old on speed, albeit from a wheelchair at rare times.

I have come to this forum to look for answers and found some, but the one thing I have found out is that most of the people I know without inner ear function rarely come anymore. Except Bob/survived, who comes to offer help and support and tell his story of perseverance and accomplishment, thanks Bob. I consider you a hero of mine Bob in every sense of the word. We may never meet, but if we do all dinners and beers are on me.

Bob continues to live his life and goes hiking, rafting, to baseball games with his son, plays golf and while it
is not easy I am sure. He I able to do them.

I was also taking with a new found friend who has no ear function from this forum who told me he does not come around because he finds it so sad, frustrating, and gets angry at reading about all the suffering taking place. He told me he feels that doctors are not honest with patients as he says te only way out is surgery one ear or two I believe he has had mm since he was 11 and at 17 or 19 he had burnout, natural laby and recently at the age of 48 after almost 37 years with mm he had a laby and CI. He is truly an inspiration of mine and a gentleman of immense patience and kindheartedness. Who after soo many years of suffering decided to take his life back and he has, as he has regained his drivers license and is going back to work. He too told me at the age of 48 he feels his life has just begun.

My friends, I ask this?

do we suffer needlessly, from this stupid disease, everyone i have ever met told me life is best without
vertigo, brain fog, anxiety of when or where the next attack is coming from. Where have all these people gone and why don't they post much anymore? Is it because they are home in bed or out living life, albeit not the perfect one, but living it nonetheless.

I once told my redneck friend from Alabama to come on and tell his story, he told me I
he would not be welcome because He has no secret cures or vitamins to push nor does he wish to engage in debate or argue with sick/disabled people. He would rather leave the suffering behind and live his life as best he could. He also told me this: doctors are not truthful because they know what the only way out of this is and they simply try to hold back the inevitable with band aids. meaning the more you see them in your lifetime the more they make. He wishes dr's would be honest with people and tell them straight up te truth and nothing but the truth rather than give them false hope.

I just wonder where all the people who decided to do something about their vertigo are? Whether it is one ear or two, are they so disabled they can't turn on a computer or are they living their life and making it work for them, the only one I know who comes around consistently is Bob and i thank him soooooo much for it.

Just a reflection and observation I have made.
When do we stop suffering and start living?

 

I think there are plenty here BD who try to live the best life they can. It's not always easy but I guess that is part of our individual journeys.

It is so hard to know the answers until we can figure out our individual causes as it is glaringly clear that there is not just one path to Meniere's symptoms so therefore there will be more than one solution.

Some are lucky to find their answer fairly quickly and others keep looking for the thing that can help them and some of us may never find what we are looking for.

As for why people have left I would imagine it is for many reasons.

 

Caro:

very well said,
I just posed the question, if things haven't worked for a year or two when do we end The needless suffering knowing gent or laby will do it for 95-99% of suffers. What are we so afraid of and is the fear just pulling the trigger.

 

well joe,
as i mentioned to you before, living with vertigo and the constant fear of it is not living at all. if i ever got vertigo again, i would keep pushing on with whatever treatments are available and if that means killing the balance function in both ears then so be it. even if i had to endure a few months in a wheelchair i would still do it, anything is better than dealing with vertigo. light at the end of the tunnel is better than no light and just worsening vertigo.
vertigo and the threat of it made me depressed/anxious/sucicidal last year. never again, i killed one ear with gent and decided to go and get my life back which i did.
i must add though, i found joh helped when i was bad but not enough. i continue to take joh just for added insurance though.

 

.

 

Intrepid:
I never intended to leave anyone out, I know carol, sherry and some others who have as well. If anyone was overlooked, I apologize.

But even I beleive they will say life is best without the vertigo. Maybe they will reach out and co tribute. Sherry has immense experiences.

I only mentioned those gentleman as I know and drew from their experiences.

In terms if suffering, we all suffer in daily living even those without mm, it is part of life, totally agree, but I am just wondering if vertigo for mm is debilitating and that suffering can be relieved Is it best to take it away.

I think in terms of finance and look at vertigo as an opportunity cost, the cost of vertigo is preventing so many from doing so much they could be doing or rathimg be doing. Is the opportunity cost of vertigo worth everything else people are missing in dealing with it. Everybody has a different opportunity cost. So the question becomes is dealing with vertigo better than what you are missing, could be doing and would rather be doing?

I wish some of those without function would come forward tell their stories and hopefully provide an inspiration and roadmap for others to follow and see the light at the end of te tunnel so to speak.

 

I guess vertigo!

Please don't pull te Stephen, I am just getting over it, I have been drinking for 3 days and can't stop because if that. I went from laughing to suicidal in less than 45 minutes. You will push me over the edge.

 

Bulldogs,
I do not have Meniere's but am here on behalf of my husband who does. When he was first struck with the illness, there is no way he could have sat at the computer in order to read or research the illness. I suspect there are many like him who do not ever make it to the computer because they are pretty much incapacitated. I am thus always impressed that people who suffer so much are able to join the forum and share their experiences.

I have read many of your posts and find that you often mention destroying inner ear function as the only real solution to the misery that comes with Meniere's. As my husband and many others have discovered, however, that is not always the case. Many, many people on this forum have eliminated their symptoms and regained control over their lives with the use of non-invasive treatments such as antivirals, JOH's regimen, trigger management, dietary/lifestyle changes, and others. In fact, you will find many of us posting in order to share that information with others.

Like many others have experienced, my husband's doctor once told him there was nothing else he could do for him (except prescribe the usual anti-depressants and anti-nausea medications). That could have been the end of the story and the beginning of some very difficult times. Instead, I believe fate brought me to this forum to learn about things my husband's doctor never heard about. This forum is a gold-mine of information but it takes time to read, learn, and process the information. Not everyone will stick around long enough to benefit. Others will remain skeptical and never try the things that are working for others. Still others have tried it all and yet do not get any better. When you reach that point, it is only logical to consider the life-altering procedures and surgeries. I believe, however, that the people who need such procedures are in the minority. The message I have taken from this forum is that there are many, many things to try before losing hope.

So, no, I don't believe in suffering needlessly and I would always be supportive of people who felt they had to take drastic action to end the vertigo. At the same time, I want people to know that there are alternative therapies out there that have worked for many people. The lifestyle changes in particular can be difficult and require a lot of discipline. I am nowhere near as disciplined as my husband is when it comes to diet and other routines and have been amazed by the willpower he has shown throughout the last couple of years. It has been worth it, though. Although he was ultimately "cured" through antiviral therapy, lifestyle changes played a huge role in helping to reduce his symptoms.

I, too, prefer an honest doctor who tells you where you stand and do not fault my husband's doctor for being straightforward. It was, however, another doctor who gave us genuine hope with his studies on antivirals. This other doctor (Dr. Gacek in Massachusetts) is largely responsible for my husband getting his life back. My hope is that more doctors become aware of (and willing to experiment with) antiviral therapy. Who knows how many people could be helped just by trying out Dr. Gacek's basic regimen?

 

Jordan:
thank you,
Your husband has found his cure, many do not.

Here it goes Jordan: follow a financial/statistical analysis for a minute.

Dr. Gacek- 85 % suscess cure rate claimed
Joh- 87% cure rate claimed
diet/diuretic - 85 % cure rate
shunt surgery- 70% cure rate

Jordan- this would tell me here is a cure for mm if one does not work the other has an over 80% chance if working and so on and that is simply not the case reading these boards. I see much pain, agony, and suffering. People thinking suicide, giving up. So that tells me something is not adding up here.

 

I might add that most people who come here are the worst of the worst in terms of what they call intractable MM. So sometimes alot of us (like me) have tried some heavy duty stuff, and it still doesn't work to a degree.

I think many that you don't see anymore either go into remission or the "fix" works. My fix kind of worked, so I hang around.

 

I don't think anyone has an obligation to continue on here after they are well, but I'm certainly glad they do!!!! That is what keeps hope alive in dealing with MM........ Without hope, then you have nothing!!!!! I can't live without hope nor do I want to whether it be MM or anything else in life.Hope is a very powerful thing, it keeps me going that's for sure....... So obligation?? No, but the fact that those people remember how they once were and still care enough to post and keep hope alive is a gift, I shout out a big thank you to all of you that do still take the time to post and tell us how you are doing..... Also to those who maybe aren't completely well but alot better than you once were........ To me, it shows that those people who are doing well or "cured" have empathy and compassion and I personally don't think we can ever have too much of that.........

 

I don't get the premise bulldogs. I'm not suffering when I am here or not here. Do you think being here makes people suffer? Being here is where I found out how to get rid if the condition that was causing my suffering.

 

June:
I read so many threads, about some terrible things, such as is life worth it, I can't go on, I'm hepless, I want to give up, ect.... I just wanted to say are we/ some of is needlessly when options are available some of those options are pretty invasive things and destructive but they are better than than the alternative when everything fails.

I see so many struggle in these pages, they try everything and still the vertigo gets them, they have a good day, week, month and than wham it strikes again and the cycle starts again,
I just want to let people know there are people on this board who have nothing in terms of vestibular function and live a good life, better than the people I read about every day getting hammered by vertigo.

It hurts to see such suffering, safeness, and hopelessness expressed on these pages.

 

My ghost writer did that one for me.

 

I get it now. I am not a fan of suffering either. I think its important not to jump to drastic permanent measures before other things have been investigated. But I wouldn't just wait forever either. Life is short, we got to plan and work to have the best life we can.

But sometimes people suffer not only from MM but also from depression or other issues that make it very hard to self correct their thinking on their own. MM doesn't help things but sometimes there are other problems too and then it's important to get help from people who can help with those problems .

 

I guess I must be in a complete fog today, because I truly do not understand the original post. What do doctors know that they won't tell you that Bob knows? Why are people leaving this cite? Maybe because of posts like this one... maybe because they are living...maybe because they are dizzy...maybe because they want to... Someone please explain this to me like "a 3 year old child" (quote from Philadelphia).

 

That's it June.

And I was trying to let these people know there are people who have nothing in terms of vestibular function available to help them, te worst of the worst and yet they make it and make it pretty well.

Some of these threads are very disturbing, with thoughts of suicide, hopelessness, worthlessness ect..... I cry for these people, because even with nothing on either side people can do well and have a life. No need to suffer needlessly, there is always an option. To end the suffering.

 

Oh, ok. I think Bulldog needs to stop drinking. Perhaps, AA is a better site for him...

 

Kay :

It is ok, I don't know your story if it is one of suscess please share it. This post has nothing to do with any dr or individual.

I woke up this morning and was reading threads about is life worth living, I can't go on, I am helplesss, I don't want to live like this, and was saddened by it all. Just because it does not have to be this way there are options.

And all I was trying to do was ask are we suffering more than we have to with vertigo. And I mentioned a few People who have absolutely no vestibular function that are living proof that life can be lived, enjoyed, and be productive even without zero vestibular function.

Do all we can and even if we are left with nothing, life can still be rewarding and good. There are people here that are proof of that. Norhing is ever helpless and worthless especially life.

 

Kay: be nice, no reason to go there with people, if you want to I will play along!
I am not looking for confrontation, but have never backed down from it my entire life,

be good