By: Annie

Wed, 23 Jan 2008 19:18:15 +0000

I have decided to close comments on this post because I am uncomfortable with some peoples’ view of my website as a Meniere’s “group.” I appreciate that so many people have responded to what I wrote but this is simply an account of one patient’s battle with MD and not an appropriate place to ask medical questions, give medical advice, or seek support from a group. Please visit http://www.anniecoleman.com/2007/06/26/menieres-disease-information-and-health-update/ for a lengthy post I wrote about some of the many online resources available where you can find more information or support groups. If you want a quick link to people to talk to please visit http://www.menieres.org -- they have several forums and you can register and participate for free.

By: Karen

Wed, 23 Jan 2008 02:31:11 +0000

Oh Lord, I thought I was the only one in the world living with this hell! I will be 53 soon and was diagnosed with MD 2 years ago, I have the vertigo, tinitus, and drop attacks. Went through all the testing to find out I have MD in both ears. On the morning of Sept 23 I woke up with total hearing loss in my right ear, again more test and all they tell me is that is not typical of MD. I've lost my job, can't drive, can't think and just did stop using a walker to get around in my home (I use the walls) this just isn't worth the strugle. What in God's name is there to look forward to?

By: Wendy

Thu, 27 Dec 2007 04:04:55 +0000

Oh, yeah. I also forgot to ask if anyone's heard Dr. Wallach's theories on this. My brother-in-law is a firm believer in him, while I remain skeptical. The guy has actually taken it upon himself to rename MD "Wallach's Vertigo", which I find a bit arrogant, but when desperate for a cure it makes one wonder. Also, I read about Clear Eye & Sharp Ear herbal supplement, which claims to prevent attacks. Any input on these would also be helpful.

By: Wendy

Thu, 27 Dec 2007 04:00:28 +0000

Hi. I was diagnosed with MD several years ago, but with the attacks being few and far between have kept it under control. Two attacks less than three weeks apart got me back into the searching for answers- It's been awhile since I've read up on this, but it doesn't look like much has changed. Here's a few things I'm wondering about: Is this possibly linked to the fluid retention that I deal with during my monthly cycle? I recently has Endometrial Ablation done because of heavy menstrual bleeding and my cycle has been all messed up since then and I've had two attacks. I've never heard anyone suggest this, but it always seems to be the case with me. I am feeling such a loss of control in my life with these attacks occuring again, so frequently. I hate not knowing when, and at a time when I've otherwise never felt better. The only things I'm doing are Meclazine and an otc deuretic. Any other hopeful preventatives out there you can suggest? Thanks for your help- I sympathize with anyone who deals with this terrible problem, and I know I'm to a lesser degree than many.

By: Carolyn

Mon, 24 Dec 2007 07:00:07 +0000

I left a message on here in August.I felt bad up until around mid October but have been feeling mostly good since then.No nausea and only mild dizziness.My doctor put me on a new medicine and I take it when i feel a little "off" and it helps.It seems like I will have a good 2 or 3 months and then it will hit me for a month or two.So far I have still only had the one major vertigo attack and that was last year December so I have went over a year now with no severe vertigo. My balance is a little off on most days but not so much that people notice.I just keep chuggin along!! Hang in there everyone!!

By: Carrie

Tue, 04 Dec 2007 20:50:00 +0000

I am in shock as I read as much as I can of the above. I've never heard of any of this until today. No one will take me serious. I can't even realy sort my thoughts right now because I currently have so many of the above symptoms. Annie - I live in St. Louis. Please tell me the doctors that you have seen. I am seeing my ENT on Monday and I have a great Primary but I can't find a Neurologist. My mind races, I feel like I am floating, my left side of my body does worse than the right sometimes. I shake and I jerk. my head hurts. I feel embaressd to be around people. I don't know what to do. Can you tell me a neurologist to see in st. louis?

By: Wendy

Tue, 04 Dec 2007 00:37:37 +0000

Giselle, After the surgery I could walk short distances, around the house, by myself. I think everyone is different, depending on how used to being dizzy you already are, how physically fit you are, how you respond neurologically to the surgery, etc. My doctor wouldn't let me take meclazine anymore and encouraged me to do PT exercises that helped--it's important to challenge your balance as much as possible, as uncomfortable as it feels, which speeds your recovery. Some days you will feel despair, but I'm told that the surgery always works, given time. The best thing is knowing you are free from vertigo. I have been offering help to people who had the surgery for 9 years through the House Ear Clinic. Someone helped me at the time and it made all the difference. Feel free to email me questions at wendyb02@socal.rr.com.

By: Giselle

Mon, 03 Dec 2007 06:18:25 +0000

Wendy, Thank you so much for your comments. It really means alot to me. I appreciate the time you took to reply. I'll take your advise and be very patient. Thanks Wendy, May I ask you? After the surgery,How soon were you able to walk on your own without any help? Thanks again :)

By: Wendy

Sat, 01 Dec 2007 21:41:25 +0000

Giselle, I had the VNS ten years ago, it gave me my life back, and I wish I'd had it years earlier. I had general imbalance for about 6 - 8 months, as did other people I spoke with who had the same surgery. There's no more vertigo, though! You can still function, but be prepared for very imcremental progress. Sometimes you'll think that you're not going to get any better, feel despair, then there will be a breakthrough. Improvements continued for me for the next 2 years. Good luck, and be patient with the recovery.

By: Giselle

Sat, 01 Dec 2007 05:08:11 +0000

Ive been living with MD for 10 years, can't tolerate the severe vertigo and drop attacks that I've been experiencing for the past two months. I am having Vestibular Nerve Section in 3 weeks. Please I'd love to know how long would it take me to get back on my feet and perfom normal daily activities after the VNS surgery.Thanks