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Papilledema?? SCARED

Hi everyone, I've been posting about my vertigo/dizziness and wanted to hopefully get some help/advice...I'm really sad/scared and could use some advice.....Like my previous posts I've had vertigo for 9 days now, I saw my doctor and they did blood work and it was compltely normal, I have an ENT appt this Wednesday to check for inner ear infections, etc...

Girls at work suggested I get my eyes checked so I did on Friday, the eye doc said I have perfect vision and my eyes looked good but once he dialted them he said he was a little concerned about my ocular nerves.  He said they looked a little differently then they should and there was some pressure on the nerves, so he referred me to a Neurologist to get an MRI/Cat Scan but they can not see me until next Thursday....on my referral he wrote: Rule Out Papilledema....to say the least I goggled this and am now scared to death....first of all, Papilledema is mainly caused from brain tumors and now I'm so paranoid I can barely make it thru the day.  Today is the first day my vertigo is actually in check/calm and now my nerves are so shot that I feel so nauscious.  The doctor said he didnt want to scare me but wanted to be precautionary and just make sure nothing serious was causing this.

Does anyone have any advice/opinion/help.  I am so discouraged/nervous that what I thought was just an inner ear infection is now something more serious....it could be nothing or it could be something....HELP! :(
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Avatar universal
To: Papilledema?? SCARED
Don't be scared.  I too have had issues with Dizziness.  There is no easy way to diagnonse dizziness.  It takes time and ruling out possible causes.  I know you are scared and frustrated.   I completely understand. I have been there!  The statics show that almost all of us willl experience dizziness at some point in our lives.   Your ENT might order and ENG (which is a test that puts warm, cold  and ice water into your ears to monitor the affects.   http://www.vestibular.org/vestibular-disorders/diagnostic-tests/eng.php   A platform postiography and rotary chair test might also be ordered.  None of these are painful.  He may not even feel that further testing is necessary and may prefer to give your body a few weeks to see if it passes.

Unfortunatly, my symptoms never stopped.  At first the doctors thought I was stressed.  I continually had to press the doctors and tell them I was NOT stressed.  I had to keep digging.  It took me about a year to find a doctor that could truly help me.  After seeing many specialist from Nuerologist, heart doctors, to ENT's I did finaly find Dr. Joseph Furman.  He was the right and most knowledgable Specialist for me.  http://www.mvrc.pitt.edu/team_furman.html   http://www.upmc.com/Communications/MediaRelations/UPMCExperts/BySubject/O/Otolaryngology/FurmanJosephM.htm

I have been living with a bilateral loss of my vestibular functions since about 1995.  It hit me one day and never went away (my cause is idiopathic (no medical reason).  The good news is that I am now 39 and I usually function quite well.  Yes, I do have those days that I have troubles, but overall I do pretty good.  I have the feeling of a drunken feeling that doesn't go away. Sometimes I get what I call seizures.  Momentary episodes of dizziness that seem to give you a completely out of sorts feeling.  Once all of my medicens that all the doctors put me on to reduce the dizziness such as antivert were taken away, after time my body learned to adjust and now things are much better.  I function quite normally. I listen  to my body, if I have one of those days, then  obviously I don't drive, and I am a bit more careful.  Along with the dizziness you may get confused or have vomiting.   I would guess with this just starting you may be experiencing anxiety as well, which of course makes the dizziness more profound.  

Our bodies have 3 things that keep us balanced.  Our eyes, ears and legs.  When  one of them is impaired it can affect our equilibrium quite profoundly.

I didn't see your earlier notes as I just signed up today.  I am now dealing with Cancer (unrelated to my Vestibular Disorder).

Keep in mind that many things can  trigger dizziness.  Too much salt in  your diet can do it.  You are doing the right thing.  You must rule out different possibilities.  However, I caution you.  Sometimes the internet can be the scariest thing.  It sometimes allows our minds to make us crazy with worry. I call it the Google Dr. Syndrome.  

As difficult as your days have been, just hang in there.  You will  find the answer and most likely it will go away and you won't be bothered again.  I will keep my thoughts positive for you.

If you don't seem to get the answers you want from your ENT, you might look  into a highly specialized ENT as Dr. Joseph Furman. Don't give up!  I had seen 2 ENT's locally  and they were overall worthless.  They couldn't quite pinpoint my issue. I had to travel way out of my circle to finally find the answers that I needed.  

There is light at the end of the tunnel.  Just don't stop looking until you find the answers that satisfy you.  Like I said, after a year,  I found the answers that satisfied me.  It was a diagnoses, but he actually knew what he was talking about and was able to help me find ways to cope.  

I will make a simple suggest.  If it is something as endphalmic hydrops, (in simple terms....crystalization that doesn't get flushed through the inner ear canal)  here is an excercise that might help. Sit up on the edge of your bed.  Hold your hands out straight.  Have someone hold your hands.  As quickly as you can keeping your back straight lay to the right.  Repeat several times.  Then lay to the left.  Repeat.  Go straight back.  Return each time to the sitting position.  Yes, it will make you dizzy.  However if it is just crystalization it will help flush them through the canal.  

Best of luck to you.  Keep me posted.
Helpful - 0
Avatar universal
Don't be scared.  I too have had issues with Dizziness.  There is no easy way to diagnonse dizziness.  It takes time and ruling out possible causes.  I know you are scared and frustrated.   I completely understand. I have been there!  The statics show that almost all of us willl experience dizziness at some point in our lives.   Your ENT might order and ENG (which is a test that puts warm, cold  and ice water into your ears to monitor the affects.   http://www.vestibular.org/vestibular-disorders/diagnostic-tests/eng.php   A platform postiography and rotary chair test might also be ordered.  None of these are painful.  He may not even feel that further testing is necessary and may prefer to give your body a few weeks to see if it passes.

Unfortunatly, my symptoms never stopped.  At first the doctors thought I was stressed.  I continually had to press the doctors and tell them I was NOT stressed.  I had to keep digging.  It took me about a year to find a doctor that could truly help me.  After seeing many specialist from Nuerologist, heart doctors, to ENT's I did finaly find Dr. Joseph Furman.  He was the right and most knowledgable Specialist for me.  http://www.mvrc.pitt.edu/team_furman.html   http://www.upmc.com/Communications/MediaRelations/UPMCExperts/BySubject/O/Otolaryngology/FurmanJosephM.htm

I have been living with a bilateral loss of my vestibular functions since about 1995.  It hit me one day and never went away (my cause is idiopathic (no medical reason).  The good news is that I am now 39 and I usually function quite well.  Yes, I do have those days that I have troubles, but overall I do pretty good.  I have the feeling of a drunken feeling that doesn't go away. Sometimes I get what I call seizures.  Momentary episodes of dizziness that seem to give you a completely out of sorts feeling.  Once all of my medicens that all the doctors put me on to reduce the dizziness such as antivert were taken away, after time my body learned to adjust and now things are much better.  I function quite normally. I listen  to my body, if I have one of those days, then  obviously I don't drive, and I am a bit more careful.  Along with the dizziness you may get confused or have vomiting.   I would guess with this just starting you may be experiencing anxiety as well, which of course makes the dizziness more profound.  

Our bodies have 3 things that keep us balanced.  Our eyes, ears and legs.  When  one of them is impaired it can affect our equilibrium quite profoundly.

I didn't see your earlier notes as I just signed up today.  I am now dealing with Cancer (unrelated to my Vestibular Disorder).

Keep in mind that many things can  trigger dizziness.  Too much salt in  your diet can do it.  You are doing the right thing.  You must rule out different possibilities.  However, I caution you.  Sometimes the internet can be the scariest thing.  It sometimes allows our minds to make us crazy with worry. I call it the Google Dr. Syndrome.  

As difficult as your days have been, just hang in there.  You will  find the answer and most likely it will go away and you won't be bothered again.  I will keep my thoughts positive for you.

If you don't seem to get the answers you want from your ENT, you might look  into a highly specialized ENT as Dr. Joseph Furman. Don't give up!  I had seen 2 ENT's locally  and they were overall worthless.  They couldn't quite pinpoint my issue. I had to travel way out of my circle to finally find the answers that I needed.  

There is light at the end of the tunnel.  Just don't stop looking until you find the answers that satisfy you.  Like I said, after a year,  I found the answers that satisfied me.  It was a diagnoses, but he actually knew what he was talking about and was able to help me find ways to cope.  

I will make a simple suggest.  If it is something as endphalmic hydrops, (in simple terms....crystalization that doesn't get flushed through the inner ear canal)  here is an excercise that might help. Sit up on the edge of your bed.  Hold your hands out straight.  Have someone hold your hands.  As quickly as you can keeping your back straight lay to the right.  Repeat several times.  Then lay to the left.  Repeat.  Go straight back.  Return each time to the sitting position.  Yes, it will make you dizzy.  However if it is just crystalization it will help flush them through the canal.  

Best of luck to you.  Keep me posted.
Helpful - 0
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