Tinnitus and CCSVI: It's all in your head!

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

Tinnitus and CCSVI: It's all in your head!

Postby happy_canuck » Fri Nov 12, 2010 1:04 am

No surprise here. Tinnitus comes from the brain, not the ears. Last weekend, the CCSVI conference in Scotland Dr. Al-Omari from Jordan presented that tinnitus is one of the symptoms that is immediately improved with angioplasty.

Now other research finds tinnitus is in the brain, not the ears:
http://www.cbc.ca/cp/health/TG1146.html

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 4:00 pm
Location: Victoria, BC Canada

Advertisement

Postby ikulo » Fri Nov 12, 2010 2:12 am

This is funny to me. I first saw my primary doc with two complaints, my hip was tingling and my left ear had extreme ringing. He gave me some pills that did nothing for my ear. He ultimately sent me to an ear/nose specialist to figure out my tinnitus. All the tests came back normal and my ear doc gave me a look that was a combination of 'you need to stop doing drugs' and 'why are you wasting my time.' A few months later I was diagnosed with MS. The tinnitus is still there, though not as prominent.

My IR ultimately found a 50% stenosis in my left jug. Unfortunately, the angio didn't much for me. But, it's interesting to hear more issues related to tinnitus.
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 3:00 pm
Location: colorado

Postby HappyPoet » Fri Nov 12, 2010 7:36 am

Ohmygosh! OHMYGOSH!! OHMYGOSH!!!

I *just now* realized that I don't have tinnitus anymore!!!

I used to hear all sorts of never-ending, high-pitched tones as well as my dog barking and the phone ringing, although the last two may be a separate category, BUT, BUT, BUT I'm not hearing those sounds anymore!

Never have I enjoyed such a long break from the sounds that never, ever remitted... most often the tinnitus would be on low volume in the background and would not be such a bother, but other times, especially when I was in a flare, the volume would become incredibly LOUD which would interfere with other sounds, including people talking right next to me.

I wish I knew exactly when I stopped hearing those sounds and which procedure helped:
Valvuloplasty in August or Atlas Orthogonal in October.

Thank you so much for the post and the link!

:)
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby happy_canuck » Fri Nov 12, 2010 9:36 am

HappyPoet wrote:Ohmygosh! OHMYGOSH!! OHMYGOSH!!!

I *just now* realized that I don't have tinnitus anymore!!!



Your excitement is contagious! I am grinning ear to ear and I didn't even have tinnitus (but I did have swallowing difficulties, another item on the Jordanian "fixed soon after angioplasty" list.

Enjoy yor new-found peace and quiet!

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 4:00 pm
Location: Victoria, BC Canada

Postby MS_HOPE » Fri Nov 12, 2010 10:32 am

I'm smiling too. :) It's so true that we can enjoy a normal physical function and completely forget that it used not to be that way (I've been there).

I'm also realizing how important it is for all of us keep a list of symptoms and their severity and frequency, and update it regularly, and particularly after anything changes (diet, supps, exercise, stress, illness or injury, angioplasty, whatever). This helps us track possible cause and effect with symptoms, though admittedly this is very tricky with MS.

In anticipation of my upcoming (I hope) but still unscheduled venoplasty, I started a list of ALL my symptoms, beginning with the worst and constant ones, down to the occasional and mild, even if I figured the symptom was unrelated to MS/CCSVI. The first day I came up with ten or so symptoms, but over the next week and a half, as I experienced symptoms I'd forgotten about, the list has crept up to 21 items!

By the way, I have only very occasional and mild tinnitus, but just experienced some last evening.
CCSVI:  Making Sense of MS
User avatar
MS_HOPE
Family Elder
 
Posts: 132
Joined: Fri Jun 11, 2010 3:00 pm
Location: North Carolina, USA

Postby HappyPoet » Fri Nov 12, 2010 2:52 pm

Hi Sandra and MS_HOPE,

Thanks for your replies! :)

I was just thinking that maybe the reason -- or one of the reasons -- why I can sleep now is because the tinnitus stopped. I couldn't tell when the silence returned, but I sure will be able to tell when/if the sounds return.

Sandra, ear-to-ear grins are the best kind. I'm thrilled for you that your swallowing difficulties were helped by your CCSVI procedure -- and so soon after the procedure is fantastic!

MS_HOPE, your idea for a log of symptoms is terrific! How I wish I had typed one up during the year I was waiting for my CCSVI procedure because now I'm wondering what other symptoms have remitted.

Good luck to everyone!

:)
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby MS_HOPE » Fri Nov 12, 2010 3:17 pm

You're welcome, HP, though my list remains on a yellow lined sheet of paper. :) Definitely would be good to get it on the computer though!

On my to-do list...haha.

Best of luck to all.
CCSVI:  Making Sense of MS
User avatar
MS_HOPE
Family Elder
 
Posts: 132
Joined: Fri Jun 11, 2010 3:00 pm
Location: North Carolina, USA

Postby astro » Fri Nov 12, 2010 11:41 pm

Not sure what to make of this, but maybe someone can speculate.

I did not have tinnitus before my angio, but in the recovery afterwards, I asked the nurse about a dull ear pain in my right ear (I wrote this down at the time in my notes). She dismissed it. The pain came and went over the next week. Now, some six months later, the pain is gone, but I have a low frequency ring in my ear in the mornings after I am laying in bed all night. I can best describe the sound as that you hear when flying on an airplane at cruise. A low-level, white-noise hum. It is with me when I wake up, but then turns into a faint, higher pitched ring for the rest of the day. Repeats the next day after my jugulars are in use all night.

My other symptoms are back, too, and the reflux had returned as confirmed by an ultrasound. So for whatever reason, the angio only worked for a short time, and my symptoms came back with the addition of tinnitus. At the very least, it demonstrates through a counter-proof that changes in blood flow are connected to the tinnitus...
User avatar
astro
Family Member
 
Posts: 27
Joined: Tue Dec 01, 2009 4:00 pm

Postby Lyon » Sat Nov 13, 2010 8:59 am

.
Last edited by Lyon on Sun Nov 20, 2011 5:21 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

ccsvi

Postby blossom » Sat Nov 13, 2010 9:53 am

happypoet, so glad you are getting relief for whatever reasons. there will be more. who knows, maybe the chiro. adj. is helping the ccsvi problem correct or not to restenose. ??
User avatar
blossom
Family Elder
 
Posts: 1370
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby esta » Sat Nov 13, 2010 1:39 pm

to all.
i have more pain, and a higher pitch ringing now with a stent, than i had with the angioplasy, which resolved eveything. i've put the ringing to the aspirin and pain to the plavix. they're the only additions...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl


Contact us | Terms of Service