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April 16, 2014 at 8:59 am #687DebHarlanderParticipant
Since 1990 I have suffered episodic hypertension crisis(always happening in the middle of the night), severe occipital left sided headache, sweating, pallor, nausea/vomiting, and my nose would run like a faucet.
In 1997 I was diagnosed with a Pheochromocytoma in my left adrenal. It was very small on MRI and my doctor was not sure it was pheo, even though my provocation testing was positive. The deciding factor were from a venous sampling of my adrenal which showed epinephrine levels over 99,000 (yes, 99 thousand). I was alpha, calcium, and beta blocked and taken to surgery in April of 97. Pathology could not locate the pheo, but it was noted that my adrenal was more than 3x normal size. So, pheo was still on the table, but having my adrenal so large could certainly explain my symptoms as well. For 6 months I was symptom free. It all returned in Sept. of 97.
I have been a patient at NIH in the pheo protocol now for 16 years. All biochemical testing for pheo is negative, but on my MRI last year it was noted that my remaining is 4x normal size. They have no idea why I’m still so sick with these episodes.
Now this is where it gets interesting. I have had over 14 orthopedic surgeries for everything from torn rotator cuffs, spinal fusions, carpel tunnel, severe trigger fingers, a total hip replacement. Before my hip replacement I had a scope for a torn labrum, and when the doctor tried to repair the labum it disintegrated. Within 18 months I had a total hip replacement. I have severe osteoarthritis, hypermobile joints, and daily pain. My body does not absorb Vitamin D, so my levels are extremely low despite treatment.
It was not until I recently had a second root canal in 8 months, and was unable to get numb that my dentist (of all people) mentioned that she had only one other patient who could not get numb and she had EDS. She told me with all of my other complicated health problems. I should really discuss it with my doctor.
Needless to say I have been doing a lot of research on EDS, and I cannot believe the stories I have read that just mirror my life. But it was the video I watched of Dr. Diane discussing the cerebral spinal fluid, that a huge light bulb went off. What if my endocrine issues are directly related to or caused by EDS?? What if those headaches that wake me in the middle of night when I’m laying flat with a little pillow and get better when I get up, are EDS related? What if? What if?
I’ve had a rheumatologist tell me my joints are hypermobile. My orthopedic surgeon tell me that he has always thought my ortho issues were related to my endocrine problems, but no one has ever mentioned EDS as being a possibility. NIH would never make this correlation, as I’ve been in a very specific protocol for many years. Although my doctor at NIH has mentioned that there is a possibility that the top of my spine could be pressing on my brain stem, or that the problems are coming from neurotransmitter problem in my brain.
Yesterday when I spoke to an advocate for EDS for over 2 hours on the phone I cried several times. Mainly because I had never spoken to anyone in 24 years who understood what I’ve been going through. It was as if all of these mysterious dots were suddenly connecting.
No, I’m not sure if it’s EDS, or if my complicated mysterious medical condition is EDS or how it all fits together. But for the first time in 24 years I feel like whatever this is might have a name.
I wear a 0.3 mg Clonidine Patch, take 0.1 mg of oral Clonidine at bedtime, and 5 mg of Norvasc in the morning. I also take 50 mg of Nucynta for pain. Unfortunately I am genetically positive for CYP450 and CYP350, so my medication choices are very limited (that’s a story for another day).
Although the Clonidine helps, and when I’m awakened with severe episodes I chew 1-2 Clonidine to bring down my BP, it does not stop the episodes.
I’m sorry this is so long, but I thank you for listening to me. Debra
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