Helpful Info for Newbies

Hi, Dizzy, and welcome. Hopefully, you will soon be able to change your name to "Used To Be dizzyallthetime."

Here is a link to a compilation (thank you, PapaJoe!) of studies supporting a viral etiology for Meniere's symptoms: http://www.menieres.org/forum/index.php/topic,22821.msg403200.html#msg403200

I refuse to call it "Meniere's Disease." It is officially a syndrome, NOT a disease.

A syndrome is a list of symptoms of unknown etiology (fancy stupid med-speak word for "cause." Get used to it--often, doctors use this word to make us feel stupid.) Here on this board, several members have uncovered MANY different causes of those exact symptoms, and many have ELIMINATED their symptoms. Whether that constitutes a cure, a remission, or simply "management" doesn't really matter, as long as those symptoms don't come back.

Hopefully, you will find what is causing yours, and be rid of them for good. Keep in mind, for many of us, it is not ONE cause, but a combination of several causes, adding up to Meniere's symptoms.

On another post, I was comparing it to looking for a smoking gun. I suspect that, in most, maybe even all cases, we weren't hit by one bullet, but from bullets from a whole firing squad. For "normal" people, being exposed to chicken pox might do absolutely nothing, or, at worst, might give them...chicken pox. But for people who might have a specific vitamin deficiency, or whose inner ear might be abnormally shaped, or whose upper cervical spine might be misaligned, leaning on nerves leading to the endolymphatic sac, or who might have an unknown food sensitivity triggering neuro problems--for all these people, being exposed to the chicken pox might be the last straw, breaking the camel's back and giving the poor camel a dizzy spell to boot.

Dealing with the chicken pox or herpes virus might be very effective at eliminating the Meniere's symptoms--but all those other things should be checked out, too, as, if you have any of them, you would want to deal with them, even if they don't cause problems now, or by themselves.

 

Hello all,
I am a 26 year old mother from Austin, Texas who has Meniere's since 1998. I have hearing loss, increased sensitivity & a constant whooshing sound (w/off & on fullness) in my left ear. I only had one dizzy spell a year from 1998-2010. Unfortunately since May 2010, I have had about 15-20, big & small. My Otolaryngologist has me on small dose Valium to help keep my nerves calm. I read a post on here about B-12 deficiency playing a role, I believe so. I am an unhealthy vegetarian, and had my blood levels checked & I am B-12 anemic. My stress levels are higher now, with school & work, and a busy 4 year old. I never thought it would get this bad. I had several daily thoughts on suicide, how would I enjoy life being dizzy nonstop & in bed daily? I fear not being able to hold a job down or graduate from college, and most importantly missing time with my son. I believe Meniere's is an autoimmune disorder, AID's run in my family, my mother & two sisters have them also, in different forms. I think Meniere's cannot be cured by surgery or pills. I think AID's are generated when one's body is so weak & overhauled from stress that it gains a sickness. I think getting your blood levels checked twice a year to monitor what vitamins you are lacking is a good key, use nasal spray to keep passage clear, try to not stress as much (yea right....use valium if needed), exercise, pray, take vitamins, drink water, and sleep with head propped up. I know its an autoimmune disorder also because if I get sick from strept, stomach bug, anything...my dizzy spells are in full whirl. I enjoy reading these posts, they are helpful. I always felt alone & like people viewed me as a liar or an attention grasper. Thanks again, Angela

 

Welcome, Angela!

No, you are not alone!

Vitamin deficiencies can certainly play a huge role in all of your symptoms, including depression. If you read the first post on this thread, you'll see that food intolerances can CAUSE vitamin deficiencies, so it might be a very good idea for you to look into that, particularly wheat/gluten. Check out www.csaceliacs.org and www.celiac.com--I bet if you post your experience there, you'll get a dozen responses from people who had similar experiences, and hopefully they can let you know what helped them.

For many, diet change alone is enough. But for others, diet might just be one factor of many.

I am very concerned about what you write about suicidal thoughts. Have you spoken about this to your husband, doctor, or friends/family?

Personally, I am very against anti-depressants, but some people have used them with very good results. (I have to say, though, that somoe antidepressants have been shown to CAUSE suicidal tendencies--great, right?)

Can you and your 4-year-old get outside in the sun? That plus exercise seems to have stronger and more immediate positive effects than most medications. Seriously.

I had post-partume depression after my second child, and felt like hibernating in a dark cave--until a friend came and DRAGGED me outside for a walk. And I was absolutely amazed how much better I felt after that--and how much worse I felt the next day when I didn't get out and walk.

I learned very quickly that I needed to be out there walking or jogging for at least 30 minutes every day to avoid dissolving into tears every 10 minutes.

Anyway, please do me a favor, okay? Take your son for a walk around the block, and then come back and let me know if you feel any better. (I hope it's not raining there!)

Oh--one last thing--AVOID DIET SOFT DRINKS. Aspartame is evil stuff, it has a major track record of causing neuro problems, and is also hidden in low-fat yogurt. (sigh)

 

I've added to the exercise section, and added a sort of subsection on hydration. No new biggies, but I thought that info might help someone.

 

TM - I think those are very worthwhile additions.

Also, in the Serc section I think it might be prudent to add for the newbies that Serc is routinely prescribed and available in Canada and Europe and probably most of the rest of the world.

There are quite a few of us here who do get some benefit from it.

Thanks

 

Thank you CarolineJ--done! But feel free to post again if I need to re-edit.

 

Thank you for that. As someone who has had such a wide range of symptoms and dates of onset that seem to affect how my Meniere's responds, I have grown weary of trying to figure out just what has caused it to appear.

Right now I'm in the space of just coping daily with it, no anger or bitterness, just acceptance. Well, now, anyway. Still waiting on a disability determination, hope that goes through soon.

 

I added this to the original post:

Hyperbaric Oxygen Therapy

I don't know if any members here have tried this, but it looks extremely promising!
http://www.oxybiotech.net/files/Article-HBOT-Menieres.pdf

http://www.ncbi.nlm.nih.gov/pubmed?term=hyperbaric%20meniere's&itool=QuerySuggestion

 

I'll go read it, thanks.

 

My first reaction on seeing the studies from 2004 and 2002 was, "OMG, they've known about this for 6-8 years, why haven't we heard anything about this?"

Then I saw a study from 1996.

And then one from 1978. 1976. 1973.

1968.

WHY HAVEN'T WE HEARD ANYTHING ABOUT THIS????

 

i was diagnosed about 8 mnth's ago and am on serc 8 mg 3 to 4 times a day depending on what sort of day i'm having
like yesterday my head was so wonky walking was a stumble and i felt on the edge of an attack so that's the day i have 4

have not had a dizzy episode for month's
i live in autralia and it is widely used here

the thing i'd like to talk about is,i had herpes on my back(just below the midline) 14 yrs ago,was not given any medication except cream for the spot it was on,the doc told me everyone has it in their system and stress(i was going through a lot of stress0 can bring it out
is it possible to be still active? or would it by now be dormant as it is in healthy people?

then there is the fact that my young sister has meniere's has had it for about 10 yrs but it was never as severe as mine,my middle sister has vertigo and tinnitus but has never had it looked at so obviously it does not interfere too much
they say it's not hereditary but i wonder
my doc will not put me on anti virals she say's they have side affects ellie

 

Welcome, Wonky!

If you repost as a new topic in the "Your living room" section instead of at the end of this thread, many many more people will see it and respond.

Herpes can indeed be still active for you, or it could have gone dormant and reactivated, or it may not be an issue for you at all. I don't know, and the only way to know for sure is to take some kind of antiviral and see if it works.

Look in the database section here for John of Ohio's supplement regimen (there's a link to it also, in the first post of this thread). He explains that l-lysine--an over-the-counter supplement, no prescription needed--can inactivate herpes viruses, but that it may take a few months to do so.

The fact that three sisters have the same or similar symptoms does not necessarily mean that the condition itself is hereditary.

You three may all have a hereditary strange formation of the inner ear, or a hereditary predisposition to neuro-specific celiac disease, or a hereditary weakness of the immune system where herpes viruses are concerned or a hereditary predisposition to thyroid disorders.

Or you may have similar diets poor in B12 and you might all be B12 deficient. Or you might all have similar acid reflux that sends you scurrying for acid blockers--which when used long-term cause B12 deficiency--which can cause Meniere's symptoms.

Hopefully, like many of us here, you will find information that helps you get rid of your symptoms for good.

 

i have auto immune disorders vit b12 deficiency i also have cervical spondylitis ......thank you for this info...........why did i not see this before.

 

Jordan, I just saw your compilation of Papajoe's virus info, and I put it onto the original post on this thread:


Papajoe's three-part list of scientific studies on the relationship between Meniere's and viruses:

Part I:
http://www.menieres.org/forum/index.php/topic,22570.0.html

Part II:
http://www.menieres.org/forum/index.php/topic,22571.0.html

Part III:
http://www.menieres.org/forum/index.php/topic,22572.0.html

This information is also available in PDF format:

http://www.papadisc.com/Menieres_Etiology_Viral.pdf

Thanks so much!!

http://www.papadisc.com/Menieres_Efficacy_AntiViral.pdf

 

bump

 

It was good to re-read some of the things that will help or have helped people through this disease.

 

all i'm missing now is the vit d deficiency, i know that coeliac (uk spelling ) causes a lot of what i have but i was diagnosed forst with menieres ooo 10 yrs ago now then it was deviated septum and when i went back to docs they just said must be meniere's again took 8 yrs to get a re referral for ent, 4 yrs ago i got dx with hashimotos thyroiditis ,2 years ago pernicious anemia and last week coeliac disease, after a horrible gastroscopy which over here in the uk they say is the only conclusive test, i did ask if i could skip the test and go gluten free to see if it helped but noooo he wanted to do the gastroscope, and am having bonedensity checked and also calcium levels and what ever else . i was warned that one auto immune disorder makes you more susceptible to others but wasnt expecting to get anymore lol. hoping that being gluten free will rid me of a lot of symptoms but will get back to you on that in about a month or so see if there is any improvement,

 

Hello all, I am a newbie to this forum as of yesterday. I have Meniere's. As I am reading many posts, I was hoping to find a page that has all the abbreviations commonly used on this site. I have done a search on a few and learned what MAV refers to but I don't know what MM is or some of the others used. It would be nice to have a list in the Newbie section or a Sticky to explain it all. It is hard enough to read through some of suffer's symptoms and what they have to live with each day. I am struggling with just feeling the mild symptoms of the tinnitis that has woken me up the last 2 days and fullness and associated hearing loss. I have not had a vertigo attack for 3 years and the symptoms that I am experiencing now have not happened for about 6 month but before that it was 3 years as well. I had a hearing test when I had the symptoms last year and it was obiviuos I had moderate hearing loss. When the symptoms cleared and i went for another hearing test it was positive...my base line hearing in the affected ear was within the normal range. I am very fearful of my life coming to a standstill based on what I have read so far. I am extremely active and hope to start a family soon (am turning 37).
I better get to work now. I am getting teary-eyed thinking of what is in store for me.

 

Hi gang, i just found a thread on ancroymns. Sorry, typical newbie, I guess.

 

No worries, it takes a while to get familiar with the site. There's so much good information, it'll take some time to absorb it all. Just keep trucking, you'll get there!