11/07/2008 – Woohoo! Mystery almost solved! Nearly a year after all of this started we think we have solved the mystery of what is happening to me. It is not an autonomic disorder after all. My autonomic testing at the Baylor College of Medicine was scheduled for October 1st. This meant I had to be off of all my medications for at least 3 days before the test. Well, by day two of no medications my symptoms were gone! We went to Houston for the testing and I had no symptoms. I was so mad!! What a waste of time! Then it hit me on the way home – I’m kind of thick that way, it takes me a while – maybe I didn’t any symptoms because of stopping the meds. Hmm…so I decided to add my medications back one at a time, for a couple days each to see if my symptoms came back.
I started with the blood pressure meds first. No problems, so on the third day I added the thyroid meds. Within an hour my symptoms were back! Aha moment!
We went to see my primary care physician right away. I was so excited that we may have figured out what was causing my symptoms! He had me stay off of the thyroid meds and ordered a sonogram of my thyroid. The sonogram results showed that my thyroid is enlarged with nodules. I am now off to see another specialist, an endocrinologist and I have been scheduled for a thyroid uptake scan, but not until I have been off of the thyroid meds for 6 weeks. That is 1 week from today – we’re getting closer to an answer!
08/31/2008 – The new neurologist is good. He had done his research on my history and did a full evaluation when we went in to see him last Friday. Of course it helps that I was having a very symptomatic day so that he could observe almost all of my symptoms. Not good for me physically, but good for diagnostic purposes! We have a tentative diagnosis, which is exciting in that I may finally be able to get treatment that will help. But at the same time it is scary reading about the debilitating effects this disorder can have on some people. He thinks that I may have an autonomic disorder called Postural Orthostatic Tachycardia Syndrome. He is sending me to Baylor College of Medicine for testing as there are no specialists or testing facilities here in our area. So a road trip to Houston is in my future. Wish me luck!!
06/28/2008 – Let me just start by saying “It would be so nice to be able to work again, to drive again, to feel like me again!” Ok, whiny little girl voice under control. Sorry about that, won’t happen again, ahem……
In November I developed a set of strange symptoms that have left the doctors scratching their heads as to what is wrong with me.
In case you are wondering about my symptoms I have posted them below. They vary from day to day in severity, but they are always there.
These are my symptoms:
- Disequilibrium – Dizziness and balance difficulty, worse when having head pressure
- Electric shock sensation inside head, kind of at the top of my brain between my temples and ears. It is a buzzing, shocking sensation – like someone is shaking my head really fast
- Racing heart/pulse when standing, especially for extended periods
- Inability to concentrate
- Cognitive impairment/feelings with not being alert or “with-it” mentally
- Difficulties with memory, and word recall
- Chronic pressure entire head, including face; behind bridge of nose and eyes, teeth; upper and lower, both ears, down neck to shoulders
- Fatigue, tiredness, poor stamina – Extremely tired after exertion or when having pressure, throbbing and heaviness in head
- Daily nausea and belching
- Rash/hives (itchy and raised bumps) along right jaw line to chin and above left brow that comes and goes
- Feel cold all the time
- Tinnitus – low buzzing occurs hours before pressure in head starts
- Sensitivity to sound – loud areas disorient me, I can hear minute sounds, that others don’t hear until they get closer to the sound
- Sensitivity to light – sunlight, bright lights, fluorescent lights trigger symptoms and head pressure
I have been to 7 specialists since this started in an attempt to diagnose what is causing these symptoms. The list below is a summary of my experiences with each of them. Keep in mind these are just my opinions, but notice also that I have left off their names.
Here is what has transpired so far:
- 1 Primary care physician – very awesome, supportive and understanding; absolutely crucial to have and I will not trade him for anything
- 7 specialists – listed in order of when I saw them
- ENT – condescending, pig headed, know-it-all buffoon; ran me through a bunch of tests that weren’t of any use to subsequent doctors, I had to take them over again, and then had the nerve to tell me that I would just have get used to it and he would send me to physical therapy to learn how to fall without getting hurt! Seriously?!!
- Neurologist #1 – condescending, I-think-I-am-God attitude; found lesions on my brain MRI scans and got all excited that it might be Multiple Sclerosis. Ran me through all the test for that including VEP and lumbar puncture. BTW – you don’t want to have one of these unless you absolutely have to, really. Once MS was ruled out the dude basically said I can’t do anything else for you, here go see this Otoneurologist. He acted disappointed that I didn’t have MS. Loser.
- Otoneurologist – awesome doctor and his physician’s assistant rocks, both approachable, thorough and good listeners; ran me through all the tests the ENT ran me through except on modern machines with electronic readouts that could be sent to the new neurologist I contacted for a second opinion to compare to the MRI scans, etc. BTW – they said I have the hearing of an 8 year old, apparently super sensitive, that is part of what led to the diagnosis of migraine.
- Neurologist #2 – approachable, mild mannered, thorough; I contacted the 2nd neurologist for a second opinion regarding the negative test results for Multiple Sclerosis. She gave a tentative diagnosis of Migraine aura without headache. See below A diagnosis of exclusion. As she is a specialist in Multiple Sclerosis she chose to refer me to another neurologist colleague of hers who is a migraine specialist when my migraines were not responding to the Topamax.
- Oncologist – approachable, mild mannered, thorough; tested for blood factor deficiencies due to some anomalies found with lumbar puncture test results – results negative
- Cardiologist – aloof, unapproachable, thorough; tested for heart murmur – results negative
- Neurologist #3 – approachable, good listener, seems willing to work with me; I was referred to this 3rd neurologist by the 2nd neurologist. He seems very willing to work with me and also seemed excited by a new challenge.
A diagnosis of exclusion
The 2nd neurologist gave a tentative diagnosis of Migraine aura without headache in May with an explanation that this is a diagnosis of exclusion since these migraines present without pain. Meaning I have symptoms of what people with migraine have when they are having what is called the aura phase, except I have it all the time and I never have pain.
So she put me on Topamax to treat the “migraines”. I started out at 25mg and titrated up to 200mg slowly, but my body didn’t like the higher doses. After 150mg I was having a bad time and at 200mg I was unable to stand up for more than a few minutes without feeling like I would pass out.
She referred me to neurologist #3 whom I saw in mid-August and he immediately had me back off of the Topamax to 100mg. After 4 days I felt so much better I could stand up and walk around, but the dizziness is back 24/7. He said he wasn’t sure about the migraine diagnosis because I should have responded better to the Topamax symptom-wise if they were related to migraines. So I go back this Friday and he is going to do a full evaluation to see what he can come up with. He said diagnosing me will be a “new challenge” and rubbed his hands together. I think I like him. He is a specialist and he also does research, I am hoping he will be able to figure out what is wrong with me.
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