Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 08-27-2021, 02:15 PM #1
Jenny O Jenny O is offline
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Default Post concussion issues (mouth) 10 years on

Sorry for the long post. I’m hoping someone here can help me as I haven’t been able to get any answers up to now.

Background is I had a concussion in 2010. At the time, there didn’t seem to be any serious effects, but a few months later, I started to get fatigue, initially just a few hours, then days and finally so bad that in 2016, I had to stop working. At the time, I was diagnosed with chronic fatigue syndrome (CFS), although in hindsight the symptoms weren’t quite right.

By February 2020, I was bedridden. I began to have trouble eating /swallowing. I was also extremely sensitive to light and sound, had noises in my head and other weird symptoms. My doctor had me admitted to hospital in July 2020 to figure out what was wrong, and, for the first time, a connection was made between my symptoms and my decade-old concussion. I was put on modafinil which helped to clear the brain fog but not much else. I was discharged after a brain scan showed no abnormalities.

Four days after being discharged, my symptoms worsened (including severe twitching) and I ended up in the emergency department. I was finally given a neurological assessment in which I was put through a series of physical /mental tests. By the end of it, I was back to normal — no more weird symptoms, no more fatigue.

The neurologist told me that I had a brain disorder which had been triggered by the concussion and that my brain would continue to give me "false symptoms". After previously being bedbound for months, I was able to walk out of the hospital.

For two or three weeks, I ran on adrenaline but then I started to get problems in my mouth/throat, left side only, which I think are related to my concussion/ disorder. The throat has improved, but I still have symptoms similar to dental neuropathy (numb tongue and on the roof of the mouth, feels like the tongue is swollen, dry mouth); these have been going on for the past nine or ten months. Although I had false symptoms when I was ill, my mouth was not affected like this.

I wonder if anyone on this forum has experienced something similar. The closest description I’ve been able to find for my symptoms is Psychogenic Lingual Paresthesia. I’ve spoken to a neurologist, a psychiatrist, dentist and an otolaryngologist but nobody seems to be able to give me an answer. I’ve also had an endoscopy which was normal.

Thanks in advance.
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Old 08-27-2021, 07:27 PM #2
Mark in Idaho Mark in Idaho is offline
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JennyO,

Welcome to NeuroTalk.

Please tell us about the mechanism of your concussion. What other injuries did you suffer?

What is your sleep like? Do you have some good night's sleep and bad night's sleep? Do you know if you are breathing properly when you sleep?

Have you ever had any hormone testing by a neuro-endocrinologist?

How old are you?

I have some ideas but want to get some answers before I mention my ideas.
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Old 08-28-2021, 12:57 AM #3
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Thank you, Mark.
I was walking fast at dusk to catch a bus home and tripped over thick movie electric cables. They are normally covered to protect against such an accident. I fell flat on my face, broke my nose, black eyes, cuts on cheek and chin; main head injury front right, I think, I don’t believe I lost consciousness but was certainly very dazed. It was 11 years ago so facts are a bit fuzzy.

My sleep is OK now and as far as I know I’m breathing properly. I did have problems while I was supposedly suffering from CFS and took sleeping medication; however, I’ve been off that now for several months.

I’m 74, eat a healthy diet and get regular exercise (walk every day). Since I’ve recovered, I have suffered from anxiety and I think that may exacerbate my mouth. I’ve never had any hormone testing.

Please let me know if you have any other questions.
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Old 08-29-2021, 01:43 AM #4
Mark in Idaho Mark in Idaho is offline
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That kind of a fall can cause a subtle upper neck injury as the cervical spine tries to continue moving forward when the skull has stopped. It can also cause whiplash to the neck. It can worsen as the spine ages. Your height has likely changed a bit over the past ten years as the cervical disks get thin. This can cause inflammation that leads to radiculopathy that can impede proper nerve function.

My last head and upper neck/cervical injury was 20 years ago. I had cervical issues for a few years but things stabilized. 2 years ago, at 64, I developed a nerve dysfunction to the part of my tongue that facilitates swallowing. The explanation is the effect aging has on the cartilaginous disks and surfaces in my cervical spine.

Besides my swallowing dysfunction, my cervical spine/brain stem can get inflamed and cause me to stop breathing if I sleep with poor head and neck posture.

I can choke on anything. It gets stuck deep at the back of my throat. I need to have a beverage ready. I can down 3 or 4 glasses of water when I go out to eat. I've had every image study possible. The diagnosis is dysphagia (idiopathic) but my ENT thinks it is a neurological issue from my neck.

I am very careful with sleep posture. I get my best sleep in a recliner. I expect to need an adjustable medical bed in the future.
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Old 08-29-2021, 11:04 PM #5
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I had no obvious neck injury at the time but your description and a possible nerve dysfunction does make a lot of sense in regard to my injury and it sounds as if it’s not likely to go away.

Thank you, I appreciate your help and sorry to hear that you have these problems.
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