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Hi! Although I am on this site for my own health (and thank you Dr. Diana for answering my emails too!), the more I learn and think about Dr. Diana’s theory, the more I wonder about something that is going on with my mom. So, I thought I better ask here and see if I might be on the right track…. or not. =)
My mom suddenly developed debilitating vertigo Oct. 2010. At first it came and went a bit, but after a few months it is now pretty much 24/7. She has constant dizziness, where she has to hang onto the wall, furniture or my dad, just to walk. If/when she has a vertigo “attack” her eye’s see the world “jumping” up and down (rats, I forget the name for this). She can’t do anything but lay in bed when this is happening, but also feels extremely fatigued and sleeps for extended periods of time, till the attack fades.
She has complete hearing loss in one ear that the doctors cannot find a cause for, which started several years ago. She also has ringing in both ears, but esp. the one with hearing loss. And, when she has an attack or even when she is “just” really dizzy, the ringing is worse.
She has described to me that she feels like her brain is hitting the inside of her skull when she moves her head and this is when the dizziness is at its worst. She says that if she can keep her head perfectly still and not move it at all, she isn’t dizzy. But, as soon as she moves her head, the dizziness is there.
She has been to her primary doctor, an ear, nose and throat doctor, and a neurologist. She has had brain MRI’s and and ECHO, both fine. They say this is Meniere’s, except that after 6+ months of trying everything in their bag of tricks for Meniere’s, she still is not better. Her doctors are stumped.
So, my question is, could this be a rare/interesting presentation of hydrocephalus? I keep thinking she should try Diamox… but maybe I am way off track here.
Thanks!
Hi! Although I am on this site for my own health (and thank you Dr. Diana for answering my emails too!), the more I learn and think about Dr. Diana’s theory, the more I wonder about something that is going on with my mom. So, I thought I better ask here and see if I might be on the right track…. or not. =)
My mom suddenly developed debilitating vertigo Oct. 2010. At first it came and went a bit, but after a few months it is now pretty much 24/7. She has constant dizziness, where she has to hang onto the wall, furniture or my dad, just to walk. If/when she has a vertigo “attack” her eye’s see the world “jumping” up and down (rats, I forget the name for this). She can’t do anything but lay in bed when this is happening, but also feels extremely fatigued and sleeps for extended periods of time, till the attack fades.
She has complete hearing loss in one ear that the doctors cannot find a cause for, which started several years ago. She also has ringing in both ears, but esp. the one with hearing loss. And, when she has an attack or even when she is “just” really dizzy, the ringing is worse.
She has described to me that she feels like her brain is hitting the inside of her skull when she moves her head and this is when the dizziness is at its worst. She says that if she can keep her head perfectly still and not move it at all, she isn’t dizzy. But, as soon as she moves her head, the dizziness is there.
She has been to her primary doctor, an ear, nose and throat doctor, and a neurologist. She has had brain MRI’s and and ECHO, both fine. They say this is Meniere’s, except that after 6+ months of trying everything in their bag of tricks for Meniere’s, she still is not better. Her doctors are stumped.
So, my question is, could this be a rare/interesting presentation of hydrocephalus? I keep thinking she should try Diamox… but maybe I am way off track here.
Thanks!
Hi ourfullhouse, Well, isn’t this interesting! YES, Meniere’s is often diagnosed in those of us with EDS (including someone in my family). The more I read about it, the more I realized that the diagnosis was kind of a dumping ground for symptoms the docs couldn’t totally explain. Was the word you were looking for “nystagmus”? I don’t have a pat answer for you, but I will tell you that I’ve also experienced these symptoms. The only difference, was that my hearing would stop for a split second, then continue, then stop, etc. My gut instinct is that either we are getting CSF in our middle or inner ears (but I doubt it), or when our pressure is high, our brain is putting more pressure on some of the cranial nerves involved (more likely). My nystagmus went away, so I know it wasn’t from a stroke! Many of us suffer from motion sickness our entire lives (which is one reason I held the head circumference study). I will tell you that for me, the majority of the tinnitus, all of the nystagmus and most of the difficulty fusing images stopped when I got my meds about right — yes, Diamox was a big part of that picture! I believe it took off enough pressure from the top of my head to ease off of the cranial nerves below, reducing the symptoms. It just FELT like my brain was not floating properly! This is one of those things that it helps to be a doctor in the body of the patient with the symptoms. I would have a lot of trouble figuring this out if I didn’t live it! I doubt that the doctor would have any problems with a Diamox trial (with no contraindications). Please keep us posted!
Ourfullhouse,
I too have alot of dizziness and nystigmus at times too… I had my ears checked thoroughly at Vanderbilt Univ. They said it wasnt Meineres but had no answers. Like Dr Diana, I have alot of Neuro symptoms, light and sound sensitivity, dizziness, pressure, etc… I really believe I have a low level of pressure. Just trying to get someone to give me a diamox trial so I can see if it helps! TraceyOurfullhouse,
I too have alot of dizziness and nystigmus at times too… I had my ears checked thoroughly at Vanderbilt Univ. They said it wasnt Meineres but had no answers. Like Dr Diana, I have alot of Neuro symptoms, light and sound sensitivity, dizziness, pressure, etc… I really believe I have a low level of pressure. Just trying to get someone to give me a diamox trial so I can see if it helps! TraceyTracey, the more I hear about your symptoms, the more I’m convinced you may have too much intracranial pressure. Are your symptoms worse with valsalva (say, blowing up a balloon?). How about flying in an airplane — any issues there, especially when they change cabin pressure for landing? And then of course is the occipital headache, radiating down our necks to the tops of our shoulders… That has been about the most diagnostic symptom yet, I think. I have yet to hear from someone with that almost constant pain (to the point many of us consider neck fusions), who didn’t respond literally overnight to Diamox! Did you see Beth’s post about her daughter’s experience? I wish I could put my fingers on it right now, but you may want to search her posts, or send her a message. She was able to get Diamox (FINALLY!). And from a PA, no less. Love it. Hang in, my friend. 🙂
Yes Valsalva aggravates me, makes me lightheaded. As far as flying, so far this year I have been on 82 flights. I didnt know why but I felt my neck/shoulders hurt worse on the flights, I just attributed it to the uncomfortable seats. Sometimes I become aggitated like I want to be off the plane. Sometimes I get a little dizzy, when I cant ground myself. Im always trying to stretch my neck, I find myself tilting my head without even being aware of it, especially to the right. Is Beth’s post on this forum, if so I will look it up.
Yes Valsalva aggravates me, makes me lightheaded. As far as flying, so far this year I have been on 82 flights. I didnt know why but I felt my neck/shoulders hurt worse on the flights, I just attributed it to the uncomfortable seats. Sometimes I become aggitated like I want to be off the plane. Sometimes I get a little dizzy, when I cant ground myself. Im always trying to stretch my neck, I find myself tilting my head without even being aware of it, especially to the right. Is Beth’s post on this forum, if so I will look it up.
Hi Tracey, Beth’s thread is here: http://prettyill.com/forums/viewthread/5/
Not unlike you (and Beth), those of us with a bit too much pressure on our brains tend to be easily motion sick, and changes in pressure — certainly when flying — and possibly even barometric pressure(!) can clean our clocks! When we have too much intracranial pressure, it doesn’t take much to make us symptomatic. As you likely know by now, my son and I had CONSTANT occipital headaches radiating down our necks and to the tops of our shoulders that went away after we took off some of the pressure. I had gotten so bad that I felt like I was passing out when I turned my head. That was a horrible feeling. I KNEW I was headed for a neck fusion, as a minimum (and a neurosurgeon recommended a brain shunt for both my son and I). But as we reduced the pressure with medication, that went away! Almost immediately, in fact. Sometimes surgery is necessary, but I believe that sometimes we can avoid it. And since classic EDS patients don’t heal well (Jeez, I can’t even heal a pimple — neck fusion may be a train wreck for me), it’s an easy thing to try first, with few potential side effects (talk to your doctor first, especially if you have a sulpha allergy).
Tilting your head may be a position that opens a vein for drainage (I have one that is stenosed unless I turn to the left), meaning you may have CCSVI. An x-ray may be interesting, just to be sure your odontoid (top bone of the spine) is straight, too). I feel optimistic for you, Tracey, that you will get this all worked out and maybe take, what, 85 flights this year? 🙂
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