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11 June 2013 @ 05:32 pm
Well, this group doesn't seem to be bustling, but not much in livejournal land really seems to be much anymore really. I guess I will introduce myself and see if any of you respond anyway.

My name is Michele and I was just diagnosed this last Friday. My hearing has been an issue for many years as well as the tinnitus of varying degrees and crazy noises (would you believe I even get cello at some points?) the vertigo did not start until this last February. I have been bounced around between audiologists,neurologists had MRIs, CT scans and no one could tell me anything. Finally I got an ENT that knew what he was doing and he gave me the good/bad news.

I say good/bad because he said if I adhered to a strict diet that there was a possibility that I could recover some of my hearing, which would be so amazing (I am really trying to not get my hopes up too high) but wow, this is forever, which is so overwhelming. He started me on diuretics and potassium supplements and wants to see me in a few weeks for bloodwork and again for another hearing test in a couple of months. I almost fainted in the front yard this morning because the diuretics made my blood pressure drop incredibly low (I am a pretty tiny person) and now I have to go back in and we have to figure something else out.

I am wondering how many of you are using a strict diet and how long did it take for the symptoms to ebb and to what degree did they go away and id you took the pills, did you have to try a bunch of combinations before you found the right one or were you able to do it with diet alone. Did you go through a phase where you felt like it was all just too much? Did you have support or did you grab the disease by the balls and do it alone? 
 
 
Current Location: Portland Oregon
Current Mood: curiouscurious
Current Music: Coil=The tenderness of wolves
 
 
05 May 2013 @ 07:54 am
Hey - Anyone still read this?

With all of my able bodies friends and family, I have been feeling cut off and alone. I need people who understand when I say 'I need to sit down' that I actually need to sit down before I fall over.

This place is something of a support group. We need to support each other. Sometimes literally. =D
 
 
13 September 2011 @ 02:59 pm
I had to take a 1/2 day off work today because I am too damn dizzy to function properly.

How is everyone else doing?
 
 
I found this group today, and wanted to let anyone who might be interested know that Dr. Michael T. Burcon is going to be the keynote speaker at a Meniere's Disease, Trigeminal Neuralgia, and Migraine seminar on June 18, 2011.  The symposium will be hosted at Ventura County Medical Center, Academic Auditorium; 3291 Loma Vista Rd, Bldg 340, Ventura, California, 93003.
Dr. Burcon was recently a featured speaker at the 6th International Meniere's Symposium in Kyoto, Japan.  He will be joined in the seminar by Dr. Tom Forest, and Dr. Manuel Don, a PhD researcher from the House Ear Institute in Los Angeles.

All doctors and student interns are welcome to attend, as well as any of the public who might be suffering from these and similar debilitating conditions.  Please RSVP your attendance with Dr. Smith's Ventura office at (805) 642-6565 so we may get a head count.
Thank you!
 
 
Current Location: Ventura, California
 
 
03 October 2010 @ 04:34 pm
Anyone still dizzy out there? Awfully quiet in here....
 
 
 
14 August 2010 @ 06:31 pm
Anyone else feeling dizzy today? I made the mistake of going down a cork-screw slide at a water park. It's been 3 hours ago and I am *still* spinning.

I hope everyone else is having a much better day than I am.
 
 
04 March 2009 @ 02:22 pm
I'm just curious. 

I first started having Meniere's symptoms when I was seven months pregnant.  I'd be symptomatic for a month, then be symptom free for a few days, and then have symptoms for another month.  I stopped having symptoms after giving birth.  Then a year later, during last August, I became symptomatic again after coming down with a bad cold while traveling.  Since then, I've been dealing with the 1 month on, a few days off thing again. 

So my question is, which constitutes an episode?  The periods when I cycle in and out of being symptomatic, or just one cycle of symptoms/no-symptoms?
 
 
23 February 2009 @ 11:15 am
Alan Shepard the first american in space, has meniers. He had it when he went up into space too. My fienca found this out. cool huh?
 
 
08 February 2009 @ 03:17 am
Ever since I remember, I always had this dizziness episodes, my mom used to say I was just not eating well, then I was in a gym class and I had to quit because I could not balance my body and kept on getting injured. When I turned 30, my dizziness increased and in '05 I experienced the first Vertigo that lasted 2 weeks. My drs said there is no cure, so don't even batter going to ER, just try to manage my diet and treat my symptoms as they come. After that, I've been dizzy sometimes, and had vertigo (lasting from seconds to 10 minutes) several times in a year, but were not as bad as the first one. I am on the low sodium diet, but I also eliminated any thing that may provoke nausea/dizziness,  that are coffee and chocolate; that is for sure if I eat chocolate, I know if it is not the same night, the next day I'll have vertigo. I just wanted to share this.
Also, I have sinus allergies, last month I was congested with allergies, I went to sky with my family for 4 days, I was not able to keep my low sodium, I was congested, and had 4 small bite size of chocolate, I didn't think I would get this bad, when I got home I was already feeling dizzy and woke up with  vertigo that lasted 10 days, on and off and continuously, non stopping, the kind that you can not move your head, If I moved my head 1 degree to the right/left/front/back the vertigo would spin even faster and I was landing on the floor every time. After this long episode, I went to see my dr to give me something for the nausea, she gave me nothing and told me to keep a journal and see her in few month, she wants to see if there is a pattern with this meniers. Her nurse gave me some advice, she also have meniers and she told me hers starts with her sinus, you have to avoid at all cost any kind of congestion that may put pressure in your ears.
I take the water pill to reduce the fluid presure, and that seems to help.
I can tell when the dizziness is coming, it starts with a little light headed, so I've been taking Sudafed Decongestant NON DROWSY and that stops the dizziness.
Also, sometimes I feel the ringing, and pain, and I'm not even congested, what I do beside the pills, I blow my nose as hard as I can, but I cover my nostrils (do Not let the air come thru my nose), I feel almost instant relief, and feel when my ears unplug.
 
 
Current Location: westlake village
Current Mood: contentcontent
 
 
24 April 2008 @ 01:20 pm
I have had a friend recently suggest to me that I should try going to a physiotherapist for something called the Epley Manoevre. Apparently a friend of hers tried this, and it relieved her vertigo (not related to Meniere's) greatly.

I'm not sure, however, if this is something that would benefit Meniere's. I've done some Googling, and the description of what it's supposed to do sounds like it's a little bit of guesswork. I'm not very good at things medical, howver, so I could be terribly wrong about that.

I'm curious if anyone has had this treatment, and if they found it to be useful or not. I'm still trying to determine if it's covered by my helathplan at work. If it is, I might try it anyway. But I'm not keen on spending my own money on something that might turn out to be useless.
 
 
Current Mood: curiouscurious