I had an appointment with my neurologist yesterday, and am glad Chooch was again there to catch the details since I was violently pissed that the cardiologist didn’t follow up with me OR send the last results over. I have doubts about this final diagnosis until the neurologist can consult with the cardiologist, but based on the other results he had he is extremely confident that he knew what was wrong with me.
He has diagnosed me with two things: neurocardiogenic syncope and vestibular migraines. The former is because I fainted twice on occasions many years ago and then again during the tilt table test. This simply means that under EXTREME conditions, I may faint. Because I have not had any fainting nor feelings of faintness in years, except for very briefly immediately following Nat’s memorial service, this is not a concern a true concern at this time. Rather, it is something to be vigilantly aware of in order to prevent it.
The diagnosis relevant to my current health issues is vestibular migraines, which is actually a catch-all diagnosis for people like me that have run the diagnostic gamut with these symptoms and everything has turned out normal. It’s disappointing to have a diagnosis by default, because it means I will likely never have full faith in it. That said, the fact that I’m in otherwise good health is a tremendous relief.
One of the things taken off the table was the possibility of needing a pacemaker, and while I’m in awe of the technology I do NOT want to be in the position of relying on a machine surgically inserted into my chest to keep my heart beating at a regular beat. I hadn’t mentioned this beyond three people because I was so terrified of the possibility, and at that point it was speculative talk by the cardiologist and neurologist.
For treatment, the doc increased the dosage of the migraine medication I’ve been on since January. I’ve had no negative side effects like with the first prescription, and seem to have had a slight lessening in frequency and/or duration of most symptoms. He also prescribed new break-through migraine medication and four weeks of vestibular rehabilitation, which is essentially physical therapy for dizzy frakkers like myself. On first pass through google, it looks like, among other things, I’ll be learning out to walk with an exaggerated hip sway and with my eyes down. I’m very excited to start, because I really want to resume life, whatever that may mean.
He’s also lifted the driving ban since the recent tests cleared out seizures or loss of consciousness as concerns. I have to take great care, as I did before the ban, to only drive when I’m feeling 100% and have taken the necessary precautions to hopefully prevent an episode while driving. I don’t need the lecture on taking caution, I had driven less than a half dozen times in the previous two months based on how I was feeling. I’m nothing if not terrified of car accidents, so will tread carefully here.
Many thanks for all of the concern, I am humbled by the number of people that have reached out to me over the months in support and camaraderie. I am truly blessed, and I know it.
I’m off to fix a birthday breakfast for my husband. No one has ever been as supportive of all my craziness, and has inspired me to be stronger and more brave than I ever thought possible. He is the most patient, kind and loving man I’ve ever met and deserves all the spoiling I can muster.
10 replies on “The Diagnosis”
First, congratulations. I’m very glad your diagnostic ordeal is over. However there is one thing I want to be very clear about. You’re under doctors orders to learn how to walk like a drag queen? Our next breast cancer walk is certainly going to be entertaining! 🙂
So glad you got encouraging news and can start to resume life. Diagnosis by default is frustrating, but probably a bit better than none.
After receiving a hilarious DM in Twitter, I’ll share this info from an article about Vestibular Rehabilitation:
” If the brain cannot rely on the information it receives from the vestibular system, a person’s ability to maintain posture and coordinate balance can become overly dependent on vision or on the information received from the muscles and joints (proprioception).
This can lead to developing new patterns of movement to compensate for the change and to avoid head movements that are apt to create symptoms of dizziness and nausea. For example, a person might adopt an exaggerated hip sway as a method of balancing, swivel the entire body rather than just the head when turning to look at something, or always look down at the floor to avoid what appears as a confusing swirl of activity.
Unfortunately, these types of adaptation can result in headache, neckache, muscle stiffness, general fatigue, and a decrease in the ability to retrain the brain to adjust to the vestibular problem, hence making the symptoms much worse.
The goal of VRT is to retrain the brain to recognize and process signals from the vestibular system in coordination with information from vision and proprioception. This often involves desensitizing the balance system to movements that provoke symptoms. ”
And lo, you have given me a story inspiration…
When or how it will come to fruition, I don’t know…
I am so glad they are finally doing something for you. Here’s to hoping you’re back to good asap!
Yay for a diagnosis.
Yay for no pacemaker.
Yay for Chooch, and his birthday.
Hope this therapy works. We’ve been really worried about you, kiddo. Good to see that you’re making progress.
neurocardiogenic syncope is kinda a catch all word and makes it sound a lot scarier then it is. My husband calls this thundering in 🙂
I had this diagnosis after passing out behind the wheel of my car. Luckily no one was hurt. My doctor explained that my blood pressure had been so low my body could no longer sustain consciousness and so my low blood pressure made it much easier for me to be susceptible to heat stroke. I remember you saying you doctor told you to add salt to your diet (mine did the same) is this because your blood pressure tends to be on the low side? One thing I found that helped with that was drinking a can (or two) of V8 daily while I was trying to raise my blood pressure. Also, I have to be careful when losing weight because it lowers my blood pressure.
As for the migraines, hopefully you can manage them. There are not cures of fixes but there are a lot of things that help. My sister in law has severe migraines and can not drink red wine or have any aged cheese because they contribute to migraines she says (so sad, only cheap processed cheese for her)
Also, a big help I have heard many people swear by is that when you feel a migraine come on, pop a fireball candy (the really hot cinnamon ball thing) into your mouth, the shock of the spicy sensation overloads your senses and dulls the migraine coming on.
I am so glad you got a diagnosis, sad it wasn’t something that could be fixed with a shot 🙁
Also, you know had you gotten a pacemaker you would be one step close to a cyborg 😉
Lastly, that picture of you and chooch is soooooo sweet
Nuchtchas – Really great info, and I appreciate it all! Yes, the increase in salt and in fluid intake is to increase my blood volume which should help with symptoms. My very favorite suggestion is the fireball candy one. I LOVES ME SOME FIREBALLS!
You rock, sweetie! Thanks so much for everything!
Many thanks to all for the kind comments!
Question: Is anyone else terrified by Nobilis having a story inspiration from all this?
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