I've been a Registered Nurse for 18 years at a beautiful hospital on the coast of Maine. Seven years ago they began specializing in Anticoagulation therapy and I helped start the clinic, never dreaming I would one day myself be a patient.
This all started for me late this July while I was helping my boyfriend who was going through cancer surgery at Dana Farber, about a four hour trip to Boston. So me, being the "expert" at preventing blood clots on the way home kept us well hydrated on a hot summer day. I made sure we took frequent stops and walks...didn't win many points with this, but he was a fresh post op.
Then about fifteen minutes after I got him settled in his home I thought I was having an aneurysm. The worst stabbing pain through the top of my head I ever experienced. I lived with migraines when I was younger, but this was different. Lasted about an hour or so and I took some Ibuprofen for the pain. Went home to bed and didn't think too much more about it. About a week later I had a weird episode where I got up during the night and didn't recall doing it. I felt altered, almost drugged when I awoke.
It took me awhile to get out of the fog I was in and as I drove to work I had numbness to the right side of my face, a severe headache, ringing in my ears and blurred vision (nurses are the worst patients and always in denial!) I told my Medical Director who is a Neurologist and he sent me to the ER. I had scans, MRI and MRA.
They just showed I had a left vertebral dominance...no big deal. Kind of like being born with green eyes it was explained to me. My symptoms never went away and my boss keep hammering away with test after test. All came back negative which was very discouraging for me as my symptoms were (and are) very real!
Finally on October first I had an MRV which showed a filling defect and question of venous clots. That bought me the Coumadin ticket. I couldn't believe how ironic it was that I was on an anticoagulant!
I also had a referral in July to meet with a MD at Beth Israel which just occurred. I have to make one thing clear here. My headache has never left, nor has the tinnitus. I occasionally have blurred vision and my balance is off. Now for the result of the Beth Israel consult...it was determined that there were no clots. They are calling them "granulations" and I have Call-Fleming Syndrome. The plan of treatment is to transition me from Coumadin to Pletal and from Propranolol (which I have been on for years for familial tremors) to Verapamil. They stopped my Welbutrin when this occurred thinking it was causing vasospasms and I was told I may resume this.
No changes yet and yes I am anxious for this to occur. I have some medical knowledge, but am totally in the dark with this diagnosis. It was determined I have a problem with both collagen and my vascular system. Also, it was noted that I have Osteogenesis Imperfecta. Two separate diagnosis, but related. That is my story, I just hope the medication changes will help the symptoms. Such an misunderstood syndrome...glad to have found this group. What a gift!
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