Waiting…

Its midnight and I’m sitting here in pain and feeling very sorry for myself and waiting for pain medicine to take effect.  Not a normal feeling for me since I consider myself to be a generally happy person. I’ve had my moments of being down but usually bounce back pretty quickly. Right now I’m just feeling sorry and I’m not going to beat myself up over it. I’m in pain, and I’m dizzy.  Yesterday was another visit with another Johns Hopkins doctor on my journey to discover what the heck is causing my abdominal pain. This doctor did a thorough exam (causing quite a bit of pain in the process), then told me he didn’t think it was anything related to his specialty.  He said if I wanted a second opinion I could see his associate.  I just said that he was the second opinion. I have another appointment with another Johns Hopkins specialist next week. Depending on that will determine if I go for a third opinion with the other department. Ugh… sometimes it feels like life revolves around my doctor appointments! I am almost ready to just accept the label of chronic pain and get on with life. They did say they could do blocks or freezes or something.  The blocks could work for a month to 6 months.  I think even a month without pain would be a blessing. I know that I’m dizzy most of the time from the Migraine associated Vertigo and all the rest of the symptoms that go along with that but I know what’s causing it so I’m managing it. Not knowing what’s causing my pain is just insane. How hard is it to find out what this is??? Meanwhile, I pre-medicate before I do anything that could possibly start off the pain – like riding the motorcycle with my husband, exercising, walking any distances, lifting, climbing the up and down the stairs too often during the day, and so on. The list is endless. Pre-medicating works but it does dull my enjoyment of life.  Now you see why I want to find out what’s causing it?  Pain can be brought on by just about anything or nothing at all. You haven’t lived until you’ve been awakened in the middle of the night in agony…  (Can you see me rolling my eyes?) Ok, I feel better now. Thanks for letting me talk it out. If you’re suffering from an invisible disease or chronic condition, there are many support groups exist. There are several on Facebook and I’ve listed 3 of them that I like. https://www.facebook.com/groups/455718637847013/ INVISIBLE ILLNESSES, Fibromyalgia, Chronic Pain, MS, Lupus, etc.  Support https://www.facebook.com/groups/52537205047/ Migraine associated Vertigo (dizziness) https://www.facebook.com/groups/33886942501/ National Invisible Chronic Illness Awareness Meanwhile, please be well and if you need to talk, feel free to reach out to me.   Thanks for listening, Kathy]]>

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

]]>