A Diagnosis

So, I’ve had my appointment with my new doctor at Johns Hopkins. I really liked him – he was very engaged in our appointment.  I spent the morning going from test to test, and finally saw the doctor and his partner. My diagnosis at this point is Migraine with Aura, Bilateral sensorineural hearing loss, tinnitus in both ears, vertigo, nystagmus, vestibular.  Whew!

I am off-balance much of the time now…

I didn’t post about it until now, I think because its hard to face. He said that essentially its migraine associated vertigo with overlapping Meniere’s Disease symptoms.  He hasn’t ruled out Miniere’s completely, but at this point, its simply an overlapping of symptoms. (Goodie)

Everything I thought I knew about migraine has changed. There is new research that shows that migraine is a lifelong problem that changes over time. Classic migraine headaches that everyone thinks of, with the crushing pain, sensitivity to light, sound and with nausea (and chills for me) may diminish with the new a-typical migraines that include vertigo, fullness in the ears, and so many other issues – which I’m now experiencing. Plus, lucky me, I still get the ‘classic’ migraine although not very often.

I’m on the Migraine Diet now, entering the second day. I have to re-learn all the triggers I thought I knew. I have to pay close attention to weather changes, stress, sleep disruptions, stress and so on – even certain scents! – and determine which can trigger these ‘new’ migraines.  Of particular note, it says to avoid MSG in all its forms (please see my MSG pages for those forms!) AND all forms of Aspertame (which includes Equal & Nutrasweet) which I know from experience are triggers.  Also, I’ll be starting some more herbal supplements. And I’m still taking my Migraine Buster Tea and Tincture since they are very effective on my classic migraines.

My new migraine happens far more frequently than I’m happy with. They start with a surge of louder ringing in the ears and then the onset of serious vertigo, I’ve also noticed there are waves of pain that start top of the head and spread forward toward the forehead, not horrific, and seems almost like a current, and nausea from the vertigo. This can last hours.

I am off balance most of the time now.

Last night, I woke up in the middle of the night to silence.  I didn’t hear ringing in my ears for the first time in over ten years, and they didn’t feel full. I was actually able to hear the ticking of my antique alarm clock and the swish of the blades of the ceiling fan! Normally I can’t hear the ticking unless I hold it close to my ears. I had to lay there and enjoy it for the 3 or so minutes that it was there, then first the left ear began ringing and then the right ear started back up, and within about 5 minutes I was back to full ringing and fullness in both ears.  I cried.   I stayed awake for a couple hours to see if the ringing would stop again… it didn’t.

Migraine is inherited, it involves the ion channels in the brain, and can be described as ‘sensitive brain’. I never new that.  My grandfather had migraines, my twin sister and older sister have migraines. I hope my children and their children can avoid them!

Some information that will be helpful – that I’ll add to my links:

A handout from my doctor that I also found online: http://www.mvertigo.org/articles/more_than_a_headache.pdf

The book  Heal your Headache: The 1-2-3 Program for Taking Charge of Your Pain by David Buchholz, which I’ve already ordered, contains the migraine diet and tips to help deal with my symptoms.

Also  Migraine by Oliver Sacks, is supposed to be very comforting – I’ve ordered this one too.

There are a number of support groups on Facebook I suggest you join. You can do a search for them from your Facebook.  Its important to realize that you’re not alone in feeling this!

My plan is to follow the diet as closely as possible, followup with the doctors at Johns Hopkins in February for more tests and an MRI as well as seeing the doctors. And try not to lose my mind while dealing with all of this.

I so hoped it was a ‘here you go, its fixed’ kind of thing.  This is my new normal.  ~ Kathy

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