Symptoms:
Blurred vision/problems focusing on TV 2 weeks before bike ride.
Killer headache on hot 65 mile bike ride September 2.
Dizzy-like and blurry vision the day after ride.
Feel like a bobble-head.
What to do?
Call CF Team after 6 days of constant dizzy/bobblehead/eye focusing problems, September 8
Sent me to ER for testing. MRI to rule out blood clots on the brain cause by exertion in heat.
No clots = Now I can sleep..and go home with eye appt.
Plot Thickens:
August I was on 3 weeks of the IV antibiotics ceftazadime and tobramycin.
If you know your drugs, you know that tobra can cause toxic reactions to structures of the inner ear.
I have been inhaling TOBI for 15 years and getting it through IV's for 16. No problems to date.
Even Thicker:
1 week into my IV's I noticed some ringing in my right ear.
Call CF team to see what we should do but we decided to continue since it didn't happen after the other doses and because I still had 2 weeks left.
Also the Cicada's were buzzing that night so I just blamed those suckers.
Rest of the tune up went well but I did notice some plugged feeling in my right ear a week after IV's.
Craziness Starts:
2 after last day of IV's above symptoms start from the second I wake up to the second I go to bed.
Not true dizziness or lightheadedness, but it's something I cannot explain.
Walking makes it worse because it feels like my brain and eyes are bouncing up and down.
My eyes cannot focus at all when walking and I can't even tell if someone is walking/running/riding a bike towards me or away from me.
This of course makes me feel like I'm seasick and nauseous too.
So what the hell is this?
My thoughts all along:
Inner ear situation caused by the IV tobra.
Had to beg ER docs to look in my ears.
They wanted the clots..I know it! "is it lupus??"
Asked docs if I should also see an ENT...apparently not.
Sent home with eye appt.
20/40 vision..better than perfect eyes.
Now what?
Temporarily stopping the Magical Blue Pill clinical trial that I'm on.
Day 11 no pill= Old CF is coming back slowly to lungs.
Cannot start until I see an ENT to get a diagnosis and cause.
We have to make certain the clinical trial drug is not causing this.
My diagnosis guess?
Labarynthitis.
My Treatment so far?
2 doses of Antivert that made my symptoms 10 times worse and feel like a crackhead.
Running...even more challenging when you can't see street signs or cracks in the road.
Yoga...balance poses aren't my friend right now but you should see my downward dawg!
Forgetting that this is even happening.
Now you are up to speed!
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