A Message To Those Who Accuse Me Of "Bashing"

Discussion in 'Your Living Room' started by nassman, Jan 29, 2007.

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  1. nassman

    nassman Guest

    An internet forum such as this one is comprised of people from various parts of the world who have different backgrounds, cultures, religions, morals, etc. As such, there will often be varrying opinions on many issues. Where I come from, people are entitled to their opinions and are allowed to express them as part of their democratic rights. I thought this is how this forum worked but I guess things have changed. It seems to me that a "mob mentality" prevails on menieres.org whereby if you do not agree with the viewpoint of the majority, you are seen as a basher if you express your differing opinion. It reminds me of one of George Bush's speeches shortly after the 9/11 attacks when he declared, "you are either with us or against us". In other words, he was telling (ahem...threatening) leaders of other nations that if they did not join in the US's efforts to attack Iraq and Afgahnistan, they were, essentially, against the USA.

    Well, I believe that this analogy perfectly describes the way I feel with reagards to the way I am replied to every time I express MY opinion on various matters. Although most of you know my stance on this matter, I will repeat it one more time below:

    I do not agree with the belief that CONTINUOUS and DAILY use of benzodiazepines and other psychotropic drugs is a treatment for meniere's disease. When I express this belief, I am not doing so in order to "attack", "troll", or "bash" anyone. I do so out of the goodness of my heart because I have seen, first-hand, in certain people near and dear to me, the dangerous effects constant use of these types of drugs can (and do) have. Therefore, when I see an individual on here (especially newbies) reach out for help and ask for advice on the use of these drugs and I read people's responses telling them that they use these drugs chronically, I will step in and voice my concern because I can guarantee to a very high percentage of certainty that people who are taking high doses of these types of drugs with the belief that it is helping keep their meniere's at bay have more issues than their meniere's. In other words, I believe that the drugs they are taking are keeping their anxiety and depression at bay which may have arisen as a result if their meniere's diagnosis or may have existed prior to their meniere's.

    What I am getting at is that despite the lack of knowledge in the area of vestibular disorders (especially meniere's), one thing all reputable doctors around the word know is that meniere's is an EPISODIC disorder that may cause some chronic symptoms many years down the road such as tinnitus and hearing loss. If someone is suffering from chronic vertigo, lightheadedness, dizziness, or whatever you want to call it, they do not have meniere's disease. This is also medically proven. Therefore, to the person that has legitimate meniere's disease, the use of drugs like klonopin and valium are proven to be very effective when they are used to battle the episodic and violent vertigo attacks one has with meniere's disease. So, just to make it clear, I HAVE NO PROBLEM WITH EPISODIC USE OF THESE TYPES OF DRUGS TO FIGHT THE VERTIGO ATTACKS OF MENIERE'S. What I have a problem with is people who attack me when I point out that using these drugs two or three times a day for weeks, months, years at a time can be dangerous and it is unlikely that the person is suffering ONLY from meniere's disease. This is the distinction I am trying to make, and it is a very important one: To someone who has true episodic meniere's disease and no mental health issues, using these types of drugs episodically may be a life saver. However, when someone has mental health issues in conjuction with meniere's it is this type of peson that will most likely be using these drugs on a chronic basis. The relief these drugs provide them with is not from the symptoms of meniere's but rather from the severe anxiety and depression they have, both of which are known to cause CHRONIC dizziness and tinnitus.

    So my final words are these:

    I am not a basher or a troll. I care and I try to help. Those who call me these names seem to forget that I fought chronic dizziness, severe headaches along with chronic tinnitus for 4.5 years. I have fought each and every day and am I doing much better now. All this was achieved without the use of benzodiazepines or pshychotropic drugs. This is the message I try to convey to the newbies when I see some people recommend that they keep changing doctors until they find one that will prescribe these drugs to them. Give your bodies a chance to heal and give yourselves time to find patterns or causes of your symptoms. These drugs are not the only choice.
     
  2. McCubbins

    McCubbins If he brought u 2 it He'll bring you through it!

    I don't know enough of what's what to infer anything, but in your defence, when the discussion of Goya Juice came up, you were quick to explain yourself, so I have no problems. Maybe it's the tone they are having an issue with, and your message gets lost in the mix.

    We are here to heal.. and I hope everyone can get along. Sniping sux.. and defeats the purpose of this forum.

    Anyhoo, my two cents, as a former (well, still) newbie. I'm sure I'll hear about it from someone if I crossed any lines, and I am not one to take sides.. just share is all.

    Cheerz, and have a great day.
     
  3. Gwendelyn

    Gwendelyn New Member

    Hi Nassman,

    I don't know what posts you are talking about, as I am not on here as much as I use to be. What I do know is that some times you piss people off (myself included) not so much by your opinion but by the delivery of your opinion. There have been a few times when I've read your posts and felt they come across as both arrogant and insulting to others intelligents and/or knowledge.

    Having said that, I also know that you are a very sincere person and that you truly are on here because you want to help people, especially newbies. There are many doctor who agree that vestibular suppressants inhibit compensation and VRT is the way to go. What is right for people who cannot compensate, I do not know.

    As I said at the beginning, I have not read the posts Nassman is talking about so I don't know what was said but I really believe that Nassman is on this site trying to help.

    Gwen
     
  4. Audrey

    Audrey New Member

    Hi Nassman

    I have just read your message and like others that have replied I have not read the posts that you were talking about so I cannot comment on them. I although am in agreement with Gwen and I am not trying to upset you in any way please remember that. I posted a long time ago when I was really very down with MM, about to loose my job because of my illness, had sac decompression surgery which didnt work and I was almost suicidal with it I felt terrible all the time and cryed by eyes out constantly. I needed some reassurance from people on this site. Everyone was fantastic but you put a post in telling me to get on with it, stop feeling sorry for myself, it wasnt life threatening and there are people in this world a lot worse off than me. I know that really I do but at the time that was not the kind of reply I was hoping to hear. I was really upset about it but some people on this forum did reassure me saying you are very good and do a lot of research into the illness. Just wanted to point this out and not fall out with you in any way but I do sometimes think your replies can sound quite harsh even though I know you are trying to help - much regards Audrey
     
  5. kristy

    kristy New Member

    Hi Nassman,

    I just wanted to agree with McCubbins who said that maybe it is the tone that people take issue with. I think that is definitely the issue. I have been mostly a lurker on here, for about a year and a half, and I have noticed that I have agreed with many of your posts, but at the same time I have felt that your tone usually comes across as very harsh. Maybe you do not mean to come across that way, but that is one of the problems with message boards like this. There is so much room for misinterpretation and misunderstanding. Thank you for trying to clear this up. I hope that everyone can see that you really are trying to help.

    Kristy
     
  6. charisse

    charisse Been hanging here for 8 years

    Nassman,

    I have known you for some 4 years on this forum. I feel you have offered alot in the way of what is fact on mm, anxiety and mav. You have written great posts that help the reader tell the difference between the three of them. I agree you delivery is what fails and I also have seen some outright attacks from you.

    Once when Ceeka posted on the porch asking folks for other illnesses they have, you got on and put up the word BORING and said others pm you and said the same. I think anyone who read that would have a not so good taste in their mouth for you, and hence when you post something that may be full of insight, you are not taken serious. and yes bashed. You and I have had some go arounds and if you read my other posts, you will not find me up against anyone else. Once again I feel you have been a voice of alot of good solid info and in fact have helped me find my dx when you posted the headache Book.

    I have mixed feelings when I think of you from many things in the past. But you will always find me reading anything you put up because I know there will be some solid stuff in it about many things medical.
    I do feel you are here to help but delivery is everything.
     
  7. Linda1002

    Linda1002 New Member

    For those who are a bit newer, nassman has made a tremendous improvement in his delivery. I guess you would have had to be here the whole time to see that, but it's true.

    I know it's hard to get past the delivery to the "main point" when we don't feel well. The information is accurate, and it's important that the information be posted even when we don't want to agree with it.

    Nassman's post above is done with correct information and with correct delivery. I'm going to try to keep that in mind and hope he continues to work on his delivery in the future.
     
  8. NurseMom

    NurseMom New Member

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  9. lizzyD

    lizzyD New Member

    Nassman has always told it as it is, and I find myself largely in agreement with most of what he has to say. Maybe the trouble is that he doesn't always say it very gently. If sufferers lived in the UK they would be unlikely to ever be given benzodiazepines. It is very much a no go area in this country. The MM sufferers manage fine without them. Some years ago there was a lot of expensive litigation regarding the dependency/addiction caused by these drugs. You are better off without them although I understand the reasons for taking them. If they help to quell an attack, then maybe they are ok on 'as and when' basis, but not on a longterm day in and day out one.

    Liz
     
  10. charisse

    charisse Been hanging here for 8 years

    I have to agree with Linda's post that your delivery has been better than in the past.
     
  11. gert157

    gert157 New Member

    I so agree with what many have posted previously, and Nassman it is NOT a you are either with us or against us mentality here.. I have never sensed that. When you start out a post with the word WRONG, it makes people defensive and quite frankly it is hurtful.. It comes off as you are belittleing people..Noone likes that feeling ,especially if you are sick which we all are or we would not be here... I too think you may be shooing new people off the site with the way you come off in your posts.... I think if you have an opinion on something as we all do, and it differs from what someone else has posted you should definietley give your opinion, just maybe with a little more tact...
    The old quote you can atrract more bees with honey than with vinegar comes to mind....Many people are tender hearted and get their feelings hurt easily, and they may very well turn away from this site after reading a post from you because of harshness of your tone in your post.... I too think you have many valid points to be made, benzos are a really controversial subject, many drs. instruct their patients to take them exactly as prescribed and sometimes it is a daily dosage. My dr. feels if you keep a low dose in your system you might not ever again have a HUGE episode, keeping things calm in the ear at all times. Bottom line, I think you have alot to offer this board, being 10 years and counting for me with MM, I have read and agreed with much of what you post, its just the way you post.. Like I said before I think we are all here to help each other keep our heads above water on the bad days, get information, read different methods of treatment etc.. Its a board of support, not a place to be made to feel stupid or naive...
    Leanne
     
  12. gtrvox

    gtrvox our pooch Hugo

    Nassman: The very same democratic society you describe - which allows you to freely express your opinions - also adheres to the principle of "live and let live". It doesn't work for you - it may work for other people. No one is here to offer definitive opinions, only friendly advice. If you precede your advice with "In my opinion...", everything is cool. If you hector people, as in "You should or should not do this or that", it is not so cool.

    LizzyD: I'd say the same about your statement: "You are better off without them....." You cannot know what I am better off with or without. You are better off without them - and that's great! I am better off with them. They help me cope. I don't think I am an addict but if I am, it doesn't bother me one bit. Short of engaging in illegal behaviour, please let's refrain from telling people what they *should* or *should not* do - even if we do so earnestly and mean well.

    George
     
  13. nassman

    nassman Guest

    Word for word, here is what I told Ron with regards to his use of Xanax:

    "You need to get help getting off of this drug. You have become addicted to it. For your own sake, please see a professional to help you wean off this drug. As you become more dependent on it you will need more and more to alleviate your dizziness...."

    Now, please tell me, does this sound like I am generally concerned or I just want to sound like a prick by telling him what to do? Sounds clear to me....
     
  14. ariapace

    ariapace New Member

    when we think we're right and we get in attack mode, i don't think it ever ends up well. i've had to learn and re-learn this lesson many times myself. a few months ago i reacted (in a post) very strongly to something someone had posted in the religion corner. i didn't think at the time that i was attacking this person, i was just making a strong comment. but some people perceived it as an attack and we're afraid that things might get out of hand (as they apparently have in the past) and that the whole spirituality and religion corner might get shut down (again). i thought this was silly. can't we make strong comments? that thread was eventually locked and then, a few days later, it disappeared. i thought this was silly and unnecessary. i think sometimes people need to hear things in a strong and loud way in order to actually hear them and wake up.

    however, later upon reflecting honestly about my post, i realized that there was an element of attack involved, and that i could have said it in a way that gave more respect to the person i was reacting against. maybe then the thread would still be here and people could still learn something from it...

    regarding nassman's point about drugs--i totally agree. when i hear about someone taking valium or whatever on a daily basis, or taking 2 or 3 or 5 or 6 drugs on a daily basis, something inside me cringes. i think, what is going to be the effect on that person's health down the road from all the side effects of those drugs? are they really necessary? it's not for me to say, but i wonder.
     
  15. caron1477

    caron1477 New Member

    Nassman: The very same democratic society you describe - which allows you to freely express your opinions - also adheres to the principle of "live and let live". It doesn't work for you - it may work for other people. No one is here to offer definitive opinions, only friendly advice. If you precede your advice with "In my opinion...", everything is cool. If you hector people, as in "You should or should not do this or that", it is not so cool.

    ***Thank you George (gtrvox) well said!

    After going through Nassman's wrath twice, I was afraid to post and ask questions. I felt bad enough and it seemed that all the compassion given by others on this forum was overshadowed by Nassman's "democratic rights". :'(

    What I have learned is that it's not worth it and I believe in what Linda has posted regarding this issue.
     
  16. Mark

    Mark New Member

    Greetings to All!

    I have been away for a bit, but have returned to the group. The word for EVERY party is "understanding." We may have our view points, but that does not detract from the other individual's own experience. We are a people that seek more to understand than to be understood...we know what it is like to not be understood.

    Blessings,
    Father Mark
     
  17. Isis_M

    Isis_M New Member

    I didn't see the particular thread in question, as I do not spend a lot of time in this part of the forum. I think that Nassman makes many valid points in general, but tends to come across in a rather confrontational manner, which tends to be off-putting to people. I think that some people may be driven away completely, and others hesitant to post because they don't want to get into a confrontation or be put down. I don't think that most people mind having their opinions disagreed with in a respectful manner, but no one wants to feel that their point of view or experience is being discounted or invalidated. No one wants to be told what they *should* do. HOW something is said is just as important as WHAT is said.

    Each person's experiences and circumstances are different from everyone else's, and what is wrong for one might be right for someone else. That is something which needs to be kept in mind.

    FTR, I disagree with the the chronic use of benzodiazepines. I never have used them chronically, and in all likelihood, never would. But that's just my own choice--to do with my life and my body as I see fit. To tell others what to do with their lives and their bodies is stepping over boundaries, IMO, even if I think what the other person is doing is not a good thing. It is not my life or my body, and unless and until it affects my life or well-being in some way, it is not my business.

    I have seen a few boards be shut down due to continuing put-downs, confrontations and attacks between posters, and I have left several boards for the same reason. I would hate for that to happen there...all of this JMO, of course.
     
  18. gtrvox

    gtrvox our pooch Hugo

    Of course you're concerned. So was my dad when he continually lectured me on what *he* thought was the best course for me - way past the age when it was appropriate. His love and concern was never in question, still, what he did was wrong. In the end I went my own way anyway - but had to wait till he was dead. You know what they say about good intentions....

    George
     
  19. ThornInDaesSide

    ThornInDaesSide New Member

    I don't have a clue as to the posts, but I can say this. Delivery is of utmost importance when posting online. Yet, it is hard to get it come across the way you intended. (Unless someone calls you a name. On another forum, I was referred to as a "yard nazi".)

    I too have strong beliefs, but I try to temper them, so they don't come across as harsh and arrogant. I am oh, so guilty of this problem!

    When I first joined, someone here took it upon themselves to inform me that I have MAV. Now, I had just heard of Meniere's, and been pre-diagnosed with it. I'd suffered for ten years with what I thought/was informed was BPPV. Hadn't heard of MAV till I found this site. (I'm awaiting my last test.)

    For me, I have this problem: UNLESS YOU ARE A PHYSICIAN, AND ARE WILLING TO PROVIDE YOUR CREDENTIALS ONLINE, DO NOT "ATTEMPT" TO DIAGNOSE SOMEONE, PARTICULARLY ME. I've had enough bad experiences with doctors, and do not need a well-intentioned, yet misguided person mislead me.

    Advise, yes, in a personal context, as in "I took XYZ drug, and this is what it did for/to me." Cautionary posts are great, but be sure they are presented that way. Otherwise, we will have confusion, and misinformation.
     
  20. Mark

    Mark New Member

    So, so true!

    We need to LISTEN to one another and hear the story. Yes, we can inform out practioner. As well, we can always inform them.

    Blessings,
    Mark
     

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