CCSVI - Meniere's

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI - Meniere's

Postby PCakes » Fri Mar 26, 2010 6:04 pm

Hi,
Throwing out a quick question... is Meniere's Syndrome a part of your lives? personal or familial?
Thanks
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Postby babiezuique » Fri Mar 26, 2010 7:01 pm

A lot of people in my family have severe problems with this ...meuniere... They had surgical interventions...
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Postby Ruthless67 » Sun Mar 28, 2010 12:06 pm

Pcakes,

Thanks for this post; I think, lol. I really have to quit reading articles & posts on the internet though. Too often I go, ah ha, that’s sounds like what I have!!! I’m beginning to think I need to add hypochondriac to my MS diagnosis. 8O

Just two weeks ago while camping with friends I woke up with my ears feeling “plugged”. I felt dizzy, but I still went outside and sat at the picnic table and tried to play a board game with our friends. Next thing I knew I was holding onto the table for dear life! Two of the med took me under my arms and escorted me back to our motor home. I spent the next 2 days nauseated, dizzy and “plugged. After the first two days I guess I got more used to the “plugged feeling and the nausea went away.

It was suggested I try a decongestant which I did and it improved it significantly, though I still feel the need to yawn to completely pop my ears, though that really doesn’t help and they are still “stuffy”.

I definitely had the sensitivity to sound while it was at it’s worst. I could hear EVERYTHING in our motor home and my head & veins all at once and was extremely agitated by that.

“A "plugged ear" or "stopped ear" sensation, usually (but not always) in one ear, varying in intensity. The sense of fullness (a feeling like, but not actually, air pressure in the middle ear) for many is like descending from a mountain and being unable to "clear" or "equalize" the pressure. (However, Meniere's Disease does not affect the middle ear.) While "classic" Meniere's Disease affects only one ear, some patients "go bi," meaning bilateral; they experience symptoms in both ears. There may be mild continuous dizziness for hours, days, or longer.

Fact: Meniere's Disease is incurable and progressive (it gets worse over time), but it is not fatal, and there are many possible treatments; however, there is no certain prognosis for any given patient.”

So great, just another crappy symptom or disease, where they say, “we don’t know what causes it and we have no cure.” “But here, try these expensive drugs that may or may not help the symptoms, and oh, by the way, look out for the side effects, they could be worse than what you have already!”

Lora
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Postby cheerleader » Sun Mar 28, 2010 12:43 pm

I've written about this on here. Search meniere's
Yes, there is a link in jugular blockage-

The author describes the case of a 68-year-old woman who experienced severe symptoms of Meniere's syndrome. Ultrasonography of the neck detected a clot in the left internal jugular vein. The patient was hospitalized and anticoagulated, and her symptoms soon resolved. The author speculates that the clot-induced hemodynamic changes led to venous insufficiency in the vein of the paravestibular canaliculus and ultimately caused the patient's symptoms. The blood work-up revealed that the patient had an elevated fasting homocysteine level, which is a known risk factor for thrombus formation.


http://www.highbeam.com/doc/1G1-111111836.html

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Sun Mar 28, 2010 1:05 pm

Ruth,

I totally understand where you are coming from. I took meds that made me sicker, had tubes but in my ears, took more meds and then when I had the CCSVI procedure it all got better but only for a week. I have horrible ringing or buzzing in my left ear, like a dog whistle. Never goes away it only gets louder and then softer and then louder. I imagine I will have to learn to live with it.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby PCakes » Sun Mar 28, 2010 11:17 pm

thank you so much for all the replies... dx benign rr 2 years back..doing well.. scheduled for MRV (re-scan) and US this week.. sister with meniere's .. profound effect on her life.. hoping to find a connection to help..pcakes
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Postby WeWillBeatMS » Mon Mar 29, 2010 5:23 am

A sudden loss of hearing along with the accompanying room spinning for 24 hours was my first sign of MS 7 years ago. I am still deaf in my right ear to this day and have the tinitus (ringing) in it and even in my left ear occasionally rings. I have seen more ENTs than I can remember, a few of them mentioned Meniere's. Another lady that I know that has MS also has hearing problems and tinitus too. We both agree that the dizziness is the worst symptom of MS for us. I am going in for my first transcranial doppler this morning. Hope they see something. Wish me well.

WeWillBeatMS
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