Dizzy/Numb Spells

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Dizzy/Numb Spells

Postby jjames » Mon Nov 08, 2010 1:33 pm

Hello all -
I haven't posted in awhile...I tend to go through times of feeling a bit better, and then worse again. I was diagnosed with ACM and SM in 1998, and had my PFD done then. It turns out that it wasn't successful, so I had a PFR done in 2007. The fluid is moving, however the syrinx is not collapsing. I have the "normal symptoms", headaches, backaches, numbness and such.....but about a year ago I had an episode (what I call it) where I went very, very dizzy - room spinning - couldn't move my legs, could hardly talk, thought I was going to pass out but was thinking very clearly. It was not a seizure, but it lasted about 3 minutes. I have had multiple tests since then - MRI's, X-rays, blood work, ear tests, etc. They are trying to rule out/diagnose tethered cord. Twice before then I have gone numb on my entire left side of my body, and it lasted about a minute. Then again a few days ago I went extremely dizzy, my left hand went numb, as did my tongue. I get so dizzy I think I am going to fall over (if standing). I even get dizzy in bed with trying to go to sleep. Any ideas? Anyone else have these symptoms?
Any help would be greatly appreciated!
~Everything is always ok in the end. If it's not, then it isn't the end.~

JJames
ACM/SM
1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
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Re: Dizzy/Numb Spells

Postby razzle » Mon Nov 08, 2010 5:05 pm

sounds like you are having a bout with Vertigo http://www.emedicinehealth.com/vertigo/article_em.htm

I have had that twice .

but with all these new things I definatly go to the dr . cause it may not be cm/sm related .R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Dizzy/Numb Spells

Postby chrisw » Mon Nov 08, 2010 7:51 pm

Any chance it could be a panic attack? They can cause these symptoms...
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: Dizzy/Numb Spells

Postby weevab » Mon Nov 08, 2010 11:03 pm

I've had something similar, due to low blood pressure. I get very dizzy and light headed, ringing in my ears, tingling in my arms, darkened vision and can't move my legs. Sometimes it's a combination of these symptoms, and often the intensity varies.
If I lay down it usually helps, and the symptoms go after a few minutes. I try to manage it with salt and caffeine, but sometimes nothing helps and I just have to bear with it.
I'd see your GP so they can do the right tests - I ended up having to see a cardiologist to make sure it wasn't a problem with my heart!
Ben - http://ooh-thathurts.blogspot.com
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Re: Dizzy/Numb Spells

Postby Lisa85 » Tue Nov 09, 2010 8:43 am

I agree with Roz. I've been dealing with vertigo for over 20 years.....Had heat stroke when I was 19 and passed out, damaged my left eardrum. Just have to roll with it when it happens. You learn to recognize the signs that an attack is coming and make sure you lie down and ride it out. Be careful about falling. It can happen really fast. Feels like really bad "bed spins", but without the fun of getting that way! :roll: Don't know if this helps, except to let you know you're not alone.
Hugs,
Lisa
SM C4-C7, 1.4mm anterior-posterior and 2mm lateral. Mild bulging of disks at C5-C6 effacing anterior CSF space. T1-T4 54mm, hydromyelia thoracolumbar junction extending over 47mm. L3-L4, L4-L5 and L5-S1. Tethered cord, Hypothyroidism.
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Re: Dizzy/Numb Spells

Postby jjames » Tue Nov 09, 2010 9:59 am

Thanks all! They have actually ruled out vertigo and blood pressure, as well as panic attacks. That is why I posted this. I am wondering if it is CM/SM related and if anyone else has experience this. Or if it could possibly be tethered cord related. They have done every test under the sun, and have ruled out pretty much everything except CM. I am frustrated and concerned......
~Everything is always ok in the end. If it's not, then it isn't the end.~

JJames
ACM/SM
1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
jjames
 
Posts: 120
Joined: Wed May 30, 2007 11:06 am
Location: Nebraska

Re: Dizzy/Numb Spells

Postby chrisw » Tue Nov 09, 2010 12:32 pm

There is SOO much they don't know about CM/SM including what other brain functions might be impacted if someone has CM. I am reading an article that has shown some of the connections betweeen CM and Spinal Bidifia and teathered cord right now and how there is a correlation between them. As far as I can tell this is the first they have found since the cm/sm correlation was proven.

Given that all of us are just guessing blindly, I guess it is a good sign we have guessed the same as the docs soo far!

Did the ENG/VNG find any problems? That is the test the audiologist should have given you that took about 3 hours with your eyes and ears? Any discrepency could point at pressure placed upon the optical/audio nerve between the eyes and ears to the brainstem?
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: Dizzy/Numb Spells

Postby keggler 1 » Tue Nov 09, 2010 12:39 pm

Might be brain stem compression......After surgery,my balance and numbness got alot better....Sometimes Chiari and BI go hand in hand.

Later ...Jerry in Carolina...
ACM S/M BI Hiatal Hernia EDS III Successful PDF 2007 Dr Rosner
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Re: Dizzy/Numb Spells

Postby tennesseewalker » Tue Nov 09, 2010 4:38 pm

I wonder if it could be related to a circulatory problem such as a spasming artery in your brain? I had a friend who had that in her coronary arteries. And one of my NS's had the same thing in an artery leading to his spinal cord; he just crumpled to the floor with no warning. He recovered, but is not allowed to do surgery anymore.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Dizzy/Numb Spells

Postby weevab » Tue Nov 09, 2010 8:53 pm

jjames wrote:Thanks all! They have actually ruled out vertigo and blood pressure, as well as panic attacks. That is why I posted this. I am wondering if it is CM/SM related and if anyone else has experience this. Or if it could possibly be tethered cord related. They have done every test under the sun, and have ruled out pretty much everything except CM. I am frustrated and concerned......


Have they had a blood pressure monitor hooked up when you've had an attack? One reason they struggled with my diagnosis is that most of the time my BP was fine, it was only during an attack it plummeted.
Ben - http://ooh-thathurts.blogspot.com
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Re: Dizzy/Numb Spells

Postby jjames » Wed Nov 10, 2010 9:59 am

Thanks all! They have checked my blood pressure, but not during an attack. And I am not sure about the circulatory issue - I will ask about that as well. Thank you!
~Everything is always ok in the end. If it's not, then it isn't the end.~

JJames
ACM/SM
1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
Mom to two wonderful sons!
jjames
 
Posts: 120
Joined: Wed May 30, 2007 11:06 am
Location: Nebraska


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