D Day!!!!!!!!!!!!!! MRI TODAY

[cindyj]

Hey, Ray...sorry things continue to get worse for you - glad your MRI has been moved up, though...hopefully, you will know the results of it very quickly. 

As Suu mentioned, unfortunately, tinnitus does not usually go away after AN treatment (there have been a few here who have had it go away, though!).  However, if it doesn't, people usually learn to cope with it...there are "treatments" which can help people cope if it continues to be debilitating to you.  They are not quick and not cheap, but docs are having some success.  In the meantime, maybe try to get one of those sound machines for sleeping at night?  The ANA symposium last year had a session on tinnitus - the cd recording of the session is avail from the ANA office if you'd like to listen to it.  It explains tinnitus in great detail as well as some of the treatments docs are trying w/ patients who suffer greatly.

We will be waiting to know your results - certainly wishing you the best!

Cindy

PS - was up in Easley this Saturday - I thought of you and "waved"  to you while I was up there

[crv1200]

Thanks cindy for the info.  If I only had the ringing in my ear I can deal with that because I've had that since childhood and I sleep with a fan on, when I was 12 I was having to play the radio just to sleep.  The other noises roar/hum is whats so hard to tell with.   Which I guess come under the same heading of tinnitus.   The follow up visit for the results will be on the 18th so another 7 days after the MRI.   I will have a copy of the MRI on CD to take to my Dr and I am sure I will be tempted to look at the images.  I know what to look for LOL I've researched so much.


Ray

[pjb]

Hey, Ray...sorry things continue to get worse for you - glad your MRI has been moved up, though...hopefully, you will know the results of it very quickly. 

As Suu mentioned, unfortunately, tinnitus does not usually go away after AN treatment (there have been a few here who have had it go away, though!).  However, if it doesn't, people usually learn to cope with it...there are "treatments" which can help people cope if it continues to be debilitating to you.  They are not quick and not cheap, but docs are having some success.  In the meantime, maybe try to get one of those sound machines for sleeping at night?  The ANA symposium last year had a session on tinnitus - the cd recording of the session is avail from the ANA office if you'd like to listen to it.  It explains tinnitus in great detail as well as some of the treatments docs are trying w/ patients who suffer greatly.

We will be waiting to know your results - certainly wishing you the best!

Cindy

PS - was up in Easley this Saturday - I thought of you and "waved"  to you while I was up there

Cindy, what are those treatments you mentioned about tinnitus would like to know I am having great difficulty dealing with mine.

Thank you

[pjb]

G'day again Ray
That is awsome news about getting your MRI moved up!  I'll be here waiting for the outcome.

I find that the noise in my ear isn't as noticable if I don't concentrate on it.  I try very hard to keep busy.
At night is my worst time.  If I'm half sitting up in bed or if I'm laying a certain way, I get a buzzing like there's a bee in my ear!  My doc keeps assuring me that it's the nerve endings that cause it and seeing he's the one with the certificates I will let him have it his way LOL

When the buzzing or ringing gets so bad that I want to stick a pillow inside my head I take a valium to calm down.

I didn't think I'd get used it but knowing why it's happening helps and trying to take my mind off it is the other thing that helps.

I have a layman's point of view on tinnitus - why can't they tie the nerve off    I'm going to ask that question on my next visit so watch this space. 

Hugs as always,
Suu xxoo

Thank you for your posts love reading them .. Have you tried Ambien to get a good nights sleep not one for medication but lately I will try anything they recommend?? Can I ask why you take valium and not the pill of choice lately prescribed by many doctors Xanax?

Best Wishes

[crv1200]

pjb,
   I am already on 2 pills a day of Xanax for anxiety, I take ambien,2 unisom and 3 melatonin just to get to sleep at night as is!  I have a high tolerance for drugs after going through 11 major surgeries in 12 yrs.  They gave me 30 pills of Valium for balance issues and I don't know if they thought it would also calm me or not but it doesn't seem to help much.   I can't imagine with the issues I am having that I would be one of those that would want to wait and watch if I had a big AN.  I don't know how anyone deals with that.   I hope I don't have an AN and all of this turns out to be a chronic meniere's disease which is still not something you want to have.   Thank God the noise in my ear is nothing like it was Saturday or I would be in the nut house already.  I was about to have a nervous break down after 6 months of loud roaring/hum and it kept increasing in loudness.  I am not sure if the Steriods is helping or not but thank God for relief a little.

Ray

[pjb]

pjb,
   I am already on 2 pills a day of Xanax for anxiety, I take ambien,2 unisom and 3 melatonin just to get to sleep at night as is!  I have a high tolerance for drugs after going through 11 major surgeries in 12 yrs.  They gave me 30 pills of Valium for balance issues and I don't know if they thought it would also calm me or not but it doesn't seem to help much.   I can't imagine with the issues I am having that I would be one of those that would want to wait and watch if I had a big AN.  I don't know how anyone deals with that.   I hope I don't have an AN and all of this turns out to be a chronic meniere's disease which is still not something you want to have.   Thank God the noise in my ear is nothing like it was Saturday or I would be in the nut house already.  I was about to have a nervous break down after 6 months of loud roaring/hum and it kept increasing in loudness.  I am not sure if the Steriods is helping or not but thank God for relief a little.

Ray

Wow that is a lot of medication to sleep is the Melatonin the 5mg or now they have 10mg stinks when you have a high tolerance and all that medication cannot be good for the stomach my daughter is like that....I was on Xanax and took myself off thinking of going back I think the tinnitus is worse..I did get a Widex and it does help a little any little bit is good. Hoping it isn't an AN but like you said Meniere's disease is no fun either my friend has that. Have you tried the Metrocyzine spelling wrong for dizziness maybe that might help a little ??... That is a lot of surgeries hoping you find good news.

Best Wishes,

[crv1200]

pjb,
   The Melatonin is 3mg per tab, I was not taking that much until I had the ear issue started.   It does seem the Steriods is actually helping this time not sure why, seems it is used with people who have a AN so if it does help with the symptoms of noise in the ear that doesn't automatically mean there is no AN does it?  I know nothing about all this..., seems today the noise on top of the usual ringing is more of a buzz almost feels like my ear itself is vibrating but kinda seems the hearing might be a little better? LOL  its so weird.   As for Metrocyzine I've never heard of that.   I am having more issues with balance.. yesterday my balance so bad I had issues going up the stairs more to the point I had to stop, which my townhome is 2 stories and my bedroom is upstairs.    I know myself I will get that CD of the images next week and will be trying to look at them LOL

Ray

[Kathleen_Mc]

Ray: did a doctor tell you to use melatonin? Just curious because I developed a sleep disorder years after my AN was removed and the specialist told me people who have had brain surgery, and thus scar tissue in the noggin', shouldn't use it, not safe.
You may find your sleeping problems improved once the tumor is removed, mine did.......my sleep disorder now is due to shift work.
Kathleen

[pjb]

Ray: did a doctor tell you to use melatonin? Just curious because I developed a sleep disorder years after my AN was removed and the specialist told me people who have had brain surgery, and thus scar tissue in the noggin', shouldn't use it, not safe.
You may find your sleeping problems improved once the tumor is removed, mine did.......my sleep disorder now is due to shift work.
Kathleen

I am interested in that your doctor said not to use it I was given Ambien to sleep and sometimes I do Melatonin instead now really concerned if I am doing more harm than good I just want to sleep?

Best Wishes

[crv1200]

Kathleen,
   I've not been diagnosed with an AN as of yet that is the reason for the upcoming MRI to see if there is one.   I have been using Melatonin for many years and have not discussed my sleeping issues with the ENT yet.  There were times I only used Ambien and last November when the ear issue started I had to increase due to the noise in my ear.    But Melatonin I've been told by a PCP is safe because it not a drug but who knows what is safe anymore.  I've had sleeping issues for probably 30+ yrs., well I had to have music playing softly when I was a child because of the ringing in my ears.   As I got old came the real insomnia so it's been a life long issue with me.  It's been probably 20 yrs since I had a good night of sleep where I didn't wake up at all.  I wake up every time I turn over now.

Ray

[pjb]

pjb,
   The Melatonin is 3mg per tab, I was not taking that much until I had the ear issue started.   It does seem the Steriods is actually helping this time not sure why, seems it is used with people who have a AN so if it does help with the symptoms of noise in the ear that doesn't automatically mean there is no AN does it?  I know nothing about all this..., seems today the noise on top of the usual ringing is more of a buzz almost feels like my ear itself is vibrating but kinda seems the hearing might be a little better? LOL  its so weird.   As for Metrocyzine I've never heard of that.   I am having more issues with balance.. yesterday my balance so bad I had issues going up the stairs more to the point I had to stop, which my townhome is 2 stories and my bedroom is upstairs.    I know myself I will get that CD of the images next week and will be trying to look at them LOL

Ray

Praying that CD shows a simple fix as far as the med I mentioned I could get the correct spelling if you need it, it is used for dizziness and did work for me prior to my surgery.. I was using the 5mg and just bought the 10mg because I was taking 2 of the 5mg..but back on Ambien instead of the Melatonin. Now I just read someone said that their doctor said not to use Melatonin after brain surgery okay another thing to be concerned with... As far as the stairs I also have my bedroom on the 2nd floor and when things get too bad I go up on my butt...whatever works!

Hoping today is a little better.

Best Wishes,

[crv1200]

pjb,
   Hopefully I will not have to start going up the stairs on my butt! LOL  I've lived in 2 story homes through all the bad abdominal surgeries and somehow I managed to get up those stairs when I needed to and through most of those surgeries I can home alone with no help so I am pretty tough but now I do realize balance issues can put you down.   The noises in my ear seems to evolving from one frequency to another, right now I have a buzz,hum and the ringing LOL.. enough to drive you crazy but nothing as loud as it was this Saturday.  WE had a weather front come through with bad storms and I think as in everything the barometric pressure changes can affect your ear issues no matter what they are just like arthritis and other things.   Thank God it is not that bad everyday right now, and maybe the steroids have helped a little too.

Ray

[chloes mema]

pjb,
   WE had a weather front come through with bad storms and I think as in everything the barometric pressure changes can affect your ear issues no matter what they are just like arthritis and other things.   Ray

I was wondering Saturday if the weather could make my balance issues worse.  We went to an art festival, there was a horrible thunder storm and my balance was way worse than normal.  Would be interesting to find out.  I'm sure the barometric pressure does affect it.  Oh goody, hurricane season ought to be real fun!!!!   

Karen

[crv1200]

chloes,
    I think the pressure does affect everything.  Today has been a really bad day, the noise in my ear is back very loud and 80% of today both eyes the lids have been twitching upper and lower, wow at the same time.   Now that is something really hard to deal with.   Anybody ever gone insane over these symptoms?  wow.

Ray

[chloes mema]

   Anybody ever gone insane over these symptoms?  wow.

Ray

I hope not but some days I think it's possible.   

Karen