bells palsy and Low Lying cerebellar tonsil on mri

[NancyJane116]

Hello, my daughter, age 25, has bells palsy two weeks after a virus (high fever, interior mouth blisters).  MRI shows "low lying cerebellar tonsil that could be variant of Arnold Chiari Type I"
She has daily headaches and the neuro said to try topomax for headache.  He also said she was born with the low lying tonsil, no worries.
I would appreciate your considered opinion on this.
Thank you so much.

[FRC23]

See a sleep center. Recurrent "Bells Palsy" is actually very characteristic of narcolepsy with cataplexy. In fact, often times, it's not "Bells Palsy," but cataplexy. Viruses and some vaccines (namely the H1N1) can actually precipitate this, but it can happen seemingly in random fashion, too.

It doesn't look the way you think it looks. Common misdiagnoses are depression, epilepsy, and migraines. I struggled for years to find an answer, and was misdiagnosed several times. I had it with just sleepiness during the day and what looked like insomnia at night for probably about 15-20 years before I ended up with more serious symptoms of narcolepsy that actually included cataplexy (random muscle weakness that can either be isolated, or widespread).

The cataplexy manifested first in my face, as what looked like episodes of Bells Palsy that came and went when I was tired, stressed, or even when I was happy and smiling.  But when I paid closer attention I realized I got weakness and twitching (not uncommon) in my other muscles sometimes too, though I chalked it up to clumsiness until I paid attention. I also had issues with my vision randomly and sleepiness.

I went undiagnosed for about 15-20 years, until I finally saw a sleep specialist and she nailed the diagnosis right away. The vast majority of doctors have absolutely no idea what it is or what it looks like, and no routine lab tests, MRI, CT scan, x-ray or anything of that nature will detect it. 75% of people with narcolepsy never get diagnosed in their lifetime.

I was tested for epilepsy, migraines, MS, all kinds of things. But nope, it turned out to be narcolepsy!!

Get seen by a sleep center!

[NancyJane116]

Thank you very much Selma for your help!
I will be looking at the dr list for someone in our area.
So very glad this site is here.   :)

[selmaS]

   Hi and welcome to the Chiari forum.

And thanks for being an advocate for ur DD ....not all of us have the support from family and it is really needed, as it is to have the support from others that r going thru the same thing, do encourage ur DD to join us here too : )

As for the low lying tonsils being there since birth, that is correct, but the symptoms cycle and she may have dealt with them her whole life, it is just that now they r getting worse....sometimes a fall, or MVA or something like that triggers the symptoms to increase....


She needs a true chiari specialist to help guide her,....we do have a list of the  members Drs for her to use to research to find the Dr just right for her.

Also she needs to educate herself as to what the Drs should be doing for her so she knows a good Dr when she meets them...there r related conditions to chiari and they will need to be ruled out.

The bells palsy may be something related to her chiari I have heard of someone else that did have it with chiari as well.