MDJunction - People Helping People
 
Ask a Question
02/10/2011 08:11 AM

Coming to terms - an intro

autmarie
autmariePosts: 27
New Member

Hi everyone! I'm new to the group and wanted to introduce myself. I'm Autumn, I'm 31 and I was diagnosed with Meneire's a few years ago but I didn't believe the diagnosis because it causes the same symptoms as another condition that I have (Intracranial Hypertension). It wasn't until about a week ago that I started to figure out that the ENT was probably right. I'm still trying to wrap my head around having two separate conditions that cause the same symptoms and trying to differentiate between them. Intracranial Hypertension causes much more than just ear problems but when I'm having ear problems it's hard to say WHICH condition is responsible and I need to know that to figure out which doctor to see and what treatments I may need. Super frustrating.

The ENT never offered any treatment options to me - possibly because he could tell that I didn't believe him? I've been reading up on here and on the internet and I'm finding that meclizine and valium seem to be the most common treatments.

Do any of you find that either of these help with the tinnitus or pressure in the ears? Or do ya'll not feel pressure in your ears? I don't even know. I'm used to the vertigo as I've experienced it for about 13 years but any help with that would be wonderful as well. My biggest gripe is the tinnitus (which makes it difficult for me to fall asleep and stay asleep lately) which is sometimes accompanied by sharp pains and the pressure. I have tried several diuretics to treat my IH but my body does not tolerate them well and I was taken off of them and given surgeries instead, so that's out. The medication I'm on to help treat my IH (which is the last resort med) has a side effect of tinnitus... joy.

Reply

02/11/2011 06:54 PM
micheller34
Posts: 28
New Member

Hi, Autumn. I find that meclizine doesn't make my vertigo go away, but it does make me so tired that I can sleep through a really bad spell (the kind when you can even fall asleep bc you feel like you're in motion laying perfectly still). I take valium mostly because it calms the nervous system and I have damage to my right vestibular nerve. My tinnitus comes and goes. sometimes it's deafening. I'm used to the white noise - sometimes that's louder too but easier to block. I don't think I'll ever get used to the sound of chewing echoing inside. I do have a 40% hearing loss in my right ear and it's strange because I can hear better on the inside than the outside. Weird, huh?

Michelle


02/12/2011 10:51 AM
autmarie
autmariePosts: 27
New Member

Thanks, Michelle. I had the vertigo that was keeping me from falling asleep last night... it wasn't so bad when my eyes were open but as soon as I closed them I felt like I was on the teacup ride! The tinnitus has been terrible and the pressure and pain have really been bothersome as well. Certain noises just go right through me... like the speakers on the laptop, GPS, smart phone, etc. Last night I took my daughter to karate and one of her classmates' siblings was playing in the "play area" and dropped some lego duplo blocks on the wood floor about 20 feet from me... I about jumped out of my skin it hurt my ears so bad. It was like a shock wave went through me - causing pain in my ears and head, making me sick to my stomach and making my ears ring terribly. No one else even startled and they all looked at me like I was crazy and then asked if I was okay.

I don't have a local ENT (I've moved since I last saw an ENT) but I think I'm going to make an appointment with my primary next week to at least talk to him about it. Maybe he would feel comfortable prescribing the meclizine and valium since it will surely be at least a month before I'll be able to get in to see an ENT as a new patient. I'd be willing to try pretty much anything to help me through this terrible spell I'm going through.


02/12/2011 05:46 PM
micheller34
Posts: 28
New Member

not sure where you live, but I went to Dr. John Kveton at Yale New Haven in Connecticut and have been very pleased. He is an ENT surgeon. also I take sudafed daily bc I have allergies and am prone to constant ear fluid and it seems to help. you have to be careful if you have high blood pressure though bc it can raise it. Good Luck! Michelle

02/13/2011 10:57 AM
autmarie
autmariePosts: 27
New Member

Thanks, Michelle! My neurosurgeon is at Yale too. It is always my first choice even though I've moved from CT to NY (Hudson Valley). Unfortunately I can't take sudafed or anything like that because I have intracranial hypertension. While not the same as high blood pressure, it is similar and things that raise blood pressure will also raise my intracranial pressure. =( Have you had surgery on your ears or do you just see him as a regular ENT?

02/14/2011 06:46 PM
micheller34
Posts: 28
New Member

I have a regular ENT in Torrington and he referred me to Yale & I had the endolymphatic shunt surgery in September. I have permanent hearing loss in my right ear and permanent nerve damage in the right vestibular nerve as well. I have noticed a big relief from the vertigo since surgery but I have to keep on the diuretics and sudafed and valium bc it doesn't take much to trigger an attack. but it's definitely much more controllable now. I think I'm learning when I feel my body starting to get run down or i'm feeling stressed to take it easy too. it's taken me awhile to figure out my triggers and how to avoid them!

02/16/2011 07:39 AM
autmarie
autmariePosts: 27
New Member

Thanks!

02/16/2011 12:34 PM
dizzymuffin
dizzymuffinPosts: 17
New Member

Hi autumn! - saw your post first. We are the same age...but I feel so alone. Thought i'd join a support forum. came from neurologist this morning after seeing him and an ENT 2x - menier's disease was given, but "early stages". It started with daily dizziness in August..the dizzy spells have continued almost daily and i'm taking the valium daily which helps but It kills me to think it's for the "rest of my life". Just found out this disease is chronic and there's no cure...trying the low-salt diet and dieuretic next week (leaving for a ski weekend - i don't want to have to supply my own diapers ha ha ha). In the last month i started having the tinitis and clogging in my left ear only. soooo annoying, but the dizzy spells are most annoying. I hate that it is chronic and forever. I need support cause this is sooo new and there's finally a name to what i'm feeling. Nice to meet you Smile

Post edited by: dizzymuffin, at: 02/17/2011 07:39 AM


02/16/2011 06:49 PM
southerngl
Posts: 37
New Member

Hi, dizzymuffin. I'm just a few years older than you and I was diagnosed last month. I, too, am struggling with accepting that this is chronic and will last the rest of my life. I worry that if I get worse what happens. You are definitely not alone.

southerngl


02/17/2011 07:38 AM
dizzymuffin
dizzymuffinPosts: 17
New Member

thanks Southern Girl!! I know. we can be scared together!!! I just got a response from someone that scared me but made that person feel great! the dieuretic caused him/her 25 lb weight loss. I'm short and tiny...I don't want to lose weight!! what are you taking for it if anything? i've been on 2-4mg valium/day. helpful but i don't want to live like this you know?? probably starting the dieuretic today...nervous now about it.

Post edited by: dizzymuffin, at: 02/17/2011 08:09 AM

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved