After almost two years of suffering, I finally have a diagnosis and a treatment protocol!
My neurologist did an extensive review of my medical history. He determined that I have a rare medical condition that doesn’t have a name (other than the catchall term of post-concussion syndrome) and is poorly understood.
Here is my attempt at describing his diagnosis of my medical condition:
He called it a double whammy. First, prior to my concussion, I already had a sensitivity to the disruption of my neurotransmitters. Second, as a result of my concussion, my brain lost control of my fight-or-flight system, aka autonomic nervous system. Unable to control the flipping between the sympathetic and parasympathetic states, my brain has been experiencing these flips approximately 1,000 times a day. I calculated this to be about once a minute!
The result of the double whammy is that my brain has concussion setbacks, and I’m finding it nearly impossible to recover because I keep making progress but then falling backward and losing ground.
Here is my attempt at describing his treatment protocol for this condition:
My neurologist explained that he has had other patients who have suffered from this condition. He said there is no pill that can cure this problem, but patients have had success through changing their diet. He explained that he is doing research into the gut-brain connection; the same neurotransmitters located in the brain are also located in the gut. He said that when patients started eating differently—and the dietary changes were different for each person—they were able to reduce their setbacks and symptoms or even eliminate them entirely.
He used the words, “They were able to get their life back.”
That made me swoon inside.
I have a chance of getting my life back?!
Wow!! Honestly, this is the first glimmer of real hope I have had in more than a year.
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And the solution sounds so simple: all I have to do is change what I eat!
The hard part is figuring out what changes my body needs. The hard part is also the waiting to see whether dietary changes will work for me; my neurologist made no promises.
I have begun the treatment protocol (he wants me to do three-week elimination diets) by going gluten free. So far, I feel great on this diet! But I’m only two weeks in, and these things take time.
Have you ever experienced a glimmer of hope within a long stretch of darkness?
Dear Liza, I am so hoping this diagnosis and change works for you. I am intrigued. After decades of neurological weirdness I was diagnosed with deep-brain epilepsy, and was told that I have a mini seizure every three minutes. The thought of having significant neurological changes once a minute . . . unimaginable, and you’ve been living through it. More power and strength to you, my friend. May you find healing.
Thank you so much! Wow, I guess both of our brains are quite active…. š Thank you for your kind words, and I wish you much power and strength as well. š
Liza – I hope this turns out great for you.
Yes, I’ve felt hope after periods of darkness.
Between depression, anxiety, chemical addiction and recovery, a divorce, suspending my career to care for ill family members, various process addictions, a batch of downer physical state diagnoses in April-June and (the most recent icing on the cupcake) a broken ankle and subsequent surgery this Tuesday, if I didn’t have bouts of hope, I’d just go back to drinking, and it would all be over pretty quick. As in within months, very messily.
Over my lifetime, I wouldn’t say I’ve been particularly “prone” to hopefulness, rather a sort of stoic “this is how life is: unfair” demeanor that can be very unpleasant to be around.
After figuring that out, I decided hope is better. In the 7-phase version of the grieving process, I think hope is actually part of the final phase.
Without hope, I wouldn’t be here writing this.
I hope for you, daily, that you will find recovery and relief. I’ve found for myself that gluten is definitely an issue psychologically and physically. I don’t know to what degree, but it seems like a rational place to start.
Peace, Rick
Thanks, Rick. All my best to you, too š
Liza,
I am so glad that you found some answers to your health issues. I know how much you’ve been suffering…. It is great that the new diagnosis allows you take action yourself to improve your health. Changing your diet is not easy at first, but after a while it becomes second nature. I hope that this will reinvigorate your efforts to get better!!!!
All the best! Hope to see you soon,
Ella
Hi Ella, thank you so much! Hope to see you soon & talk about new diets and such š