Vestibular Migraine, Hydrops and Possible Superior Canal Dehiscence

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leshurd
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/3/2011 1:29 PM (GMT -6)   
Hello,
 
I'm new here and have been dizzy and off balance for 5 years with ALL the symptoms.  Sensitive to light, noise, smells, alcohol (major bummer) fatigue brain fog, you name.  It all happended after I had my second child.  I'm a 38 year old femaile.  I recently suffered 2 debilitating attacks of violent vertigo 10 days appart from eachother and never fully recovered.  I finally found a neurotologist who was convinced I was suffereing from Vestibular Migraines until he ran all the vestibular tests and found high fluid pressure in my right ear (not Menieres) and what looks to be a Superior Canal Dehiscence(a hole in the semi-circular canal bone).  He decided since surgery is a big decision and I don't have really any of the symptoms of the deciscence we would try to treat all of this like Migraine and if I get relief from meds then its Migraine and not the dehiscence.  I also have to eat a reduced sodium diet for the hydrops which he also told me 1/3 of people with Migraine have hydrops as well.  My question for anyone out there is does anyone suffer from the vestibular migraines and have hydrops as well or any other inner ear problem?  I tried 4 days of Verapamil and it exausted me and made dizzier! I will never try Topomax.  I am extremelely sensitive to meds.  I was only on 40mg 2x a day of verapamil and couldn't handle that.  I also think doctors like to treat one problem with meds that were designed for another problem and I think it's stupid.  Some people get relief and that's great but I'm looking for a more natural solution.  I just went back to work after 6 weeks off because of the vertigo and feel like I'm going to have to file for disability or something!  The last 4 years of my life have been so depressing.  My kids don't think I'm fun.   I can't even jump on the trampoline with them let alone EVER ride a carnival ride.  I used to love doing all that and now everything makes me dizzy and causes major anxiety and panic attacks.  Is there anyone out there like me?

Pepperpotty
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/19/2011 11:46 AM (GMT -6)   
Hi there, yes there are lots of people out there like you and we are all gatherered at http://scdssupport.org/forum/index.php which is a support group for everyone who has semicircular canal dehiscence syndrome.

I'm Emma and I was diagnosed with scds, cochlear hydrops and cochlear otosclerosis. Before I was diagnosed with scds the doctors kept trying to diagnose me with migraine associated vertigo but I wasn't having any of it! It just didn't match my symptoms. After suffering since March 2010 I was finally diagnosd in June 2011 and I had surgery to fix the dehiscence 17 days ago. During the surgery my surgeon also discovered that I had multiple holes in my temporal bone and a very thin dura. You are right though, surgery is very complicated and it doesn't always go well.

You are right to reject Topamax, I was put on that and I reacted so badly that it made me almost psychotic!

You might also be interested to know that most people who have scds also have cochlear hydrops so this may not be caused by your migraines. Oh and most people who suffer from scds also suffer terrible headaches so your migraines may even be caused by the dehiscence!

Anyway, come and join us at the forums and hope to speak soon.

Take care, Emma

leshurd
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/19/2011 2:33 PM (GMT -6)   
 
 
Emma,
 
Thanks for the reply.  I joined that support group but it didn't seem to fit for me.  Everyone was kind of either pre surgery or post surgery and I don't even really have any of the symptoms of SCD so I haven't really been on that site.  Maybe I will give it another shot.  Before I do I wanted to ask you what your symptoms were?  I don't have any of the hearing noises in my ear although when I am active or straining or doing heavy yard work I do get dizzy.  Last year I was sick a lot and if I went into a coughing fit it made me really dizzy.  My doctor said that he wanted to treat me for Vestibular Migraine first and didn't think I should have the surgery.  He said that 1/3 of people with Vestibular Migraine have hydrops and if I get relief from the Verapamil then it is definitely migraine which might also dry up the hydrops.   If I don't, then it is probably the SCD.  This is all so confusing to me.  I wish I had a cut and dry diagnosis.  My suspected SCD is so small that he is not sure if it is even really there even though I had a positive VEMP test and positive ECOG.  He also said that if it is there it could get larger at any time and I could start to experience symptoms.  What do you think?
 
 
Leslie

Pepperpotty
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/19/2011 4:47 PM (GMT -6)   
Hi Leslie,

I've seen your post on the othe forum and I agree completely with what everyone else is saying. You do sound like you are exhibiting some of the symptoms of scds. Not everyone will show every symptom and some people go through life without ever knowing that they have it and it is only discovered when an autopsy is performed. When you said that your dehiscence is only the size of a pin head, that is not unusual. Mine measured 2.5mm but you know that the whole of the inner ear only measures about 1cm. The largest dehiscence I remember seeing reported is about 6mm, but there is no relation between the size of the dehiscence and the severity of the symptoms.

You asked me about my symptoms. When I first started to get ill it was just the dizziness, several months later I became sensitive to sounds. Then came autophony, and then after about 10 months of being ill I realised that I could hear my eyes move. I never suffered from nystagmus which is one of the "classic symptoms".

Your reaction to pizzas and other very salty foods sounds suspiciously like a sided effect of your hydrops.

When your surgeon mentions that sometimes scans show a false positive for scds, that is only normally the case when the ct scan has been performed incorrectly. Because the dehiscence is so small a ct scan should be done at least 1mm slices if not 0.5mm. Many people on the forums have had to have many scans done before they have been successfully diagnosed.

It looks like you're getting some good advice on the forum and I really hope you get to the bottom of your illness.

Emma

leshurd
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/19/2011 5:04 PM (GMT -6)   
Thanks for the response. I need as much support as I can get. Nobody understands. My husband really doesn't understand what happened to his wife. We don't even have an intimate relationship anymore. It makes me dizzy!!! I'm glad I've found some people who understand

Leslei
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