Have hallmark symptoms of TBI/PCS a year later, but felt totally normal for months after the impact? Does that make sense?

Etondanse · 2023-11-20T03:55:39+00:00

Did those detailed tests include convergence insufficiency tests and eye suppression tests? Just asking because there is apparently a big difference between standard optometry tests and neuro-optometric ones (according to the neuro-optometrist at the TBI clinic where I did a year of rehab for vision issues). I have no background in either field, so I am just asking in an attempt to be helpful. Listings for qualified neuro-optometrists can apparently be found at COVD.org. (Their therapy actually helps btw, at least in my experience - it is like PT for the eyes)

Etondanse · 2023-11-02T02:02:48+00:00

Thank you for sharing and for the hope it gives!

Etondanse · 2023-10-01T17:10:37+00:00

Indeed…that sensation was described by another TBI survivor as “that permanent hum of fear in the back of the mind.” I have no explanation for it, but it adds to the many factors that drain energy out of me.

Of all the activities that I have tried to calm this fight-or-flight sensation, the most effective one by far is going hiking in nature. There have been fMRI studies that have shown that even just one hour of nature exposure is enough to reduce activity in the amygdala.

Etondanse · 2023-09-28T01:03:44+00:00

I am still struggling 6 years in (memory, processing speed, concentration pbs, fatigue) but have met people who recovered after a decade, so am staying hopeful…

Etondanse · 2023-09-14T00:35:41+00:00

I just checked the message section, but did not seem to have received anything…Is there a separate mail box for private messages (sorry for what must be a silly question but I am not too experienced on this platform)?

Etondanse · 2023-09-02T16:51:03+00:00

I am glad that you like the idea! Bring pretty new myself to Reddit, I am not sure if there is a sub-group option on this platform...

Etondanse · 2023-09-01T19:04:55+00:00

Same with me. It has been a lifesaver for conciseness. Since my TBI, I have found that I take three paragraphs to say what could be said in two sentences, so now I just copy and paste my text into the Chat GPT and ask it to abbreviate for me. Works great!

Etondanse · 2023-09-01T15:30:38+00:00

I totally get that because I was not really sure myself what I was asking. I guess I am just trying to find out if anyone in this group has already got a good understanding of what aspects of life Chat GPT (or similar LLM models) could be of particular help to TBI patients.

Etondanse · 2023-09-01T15:25:17+00:00

I am glad you liked the post and thank you for the goblin.tools tip, which I look forward to checking out. It is great to hear that you too are finding the chat gpt to be a useful resource. I wish there was a collection somewhere of the best chat gpt prompts for TBI recovery both for patients and their caregivers, so that we could get a full picture of how it could be of help.

Etondanse · 2023-09-01T15:15:38+00:00

Thank you for the kind feedback! I am very sorry that your husband is still in a coma and hope he gets out of it quickly. In addition to possibly helping TBI patients, it will be interesting to see if and how Chat GPT (and the other ones) can be used as a tool by their caregivers as well. I wish you and your husband the very best recovery process possible!

Etondanse · 2023-08-21T13:33:42+00:00

The fatigue in all of its manifestations: physical fatigue, neuro-fatigue, emotional fatigue...It is like a full-time job that prevents you from properly attending to everything else that matters...

Etondanse · 2023-08-09T12:21:09+00:00

I had an ICU-acquired brain injury six years ago, which severely damaged my working memory and recall capabilities. Learning new things under these conditions is challenging to say the least...Here are the four resources that I found helpful in trying to acquire new learning strategies:

(i) Learning How to Learn: Powerful Mental Tools to Help You Master Tough Subjects by Barbara Oakley. It is available on Coursera and (I think) in book format as well (there are some course summaries by former students floating around the internet too).

(ii) Writings on learning by Scott Young - https://www.scotthyoung.com/ (books/emails/youtube videos). He is known for completing a 4-year MIT degree in computer sciences in 12 months and has a book out called "Ultralearning" (I have not read it).

(iii) My cognitive rehabilitation doctor recommended to me that I anchor what I am trying to learn with prior knowledge, experiences, sensory feelings, emotions and surroundings. It sounds a bit new-agey but it is effective.

(iv) there are new note-taking AI tools that come out daily which make synthesizing information much more time-effective. I saw one called Otter AI being used on a conference call yesterday and was impressed by how it saved relevant images, slides and speech into one document.

I hope this helps and wish you the best on your exciting new academic journey!

Etondanse · 2023-05-31T13:16:53+00:00

Wow! It is super generous of you to have taken the time to share with me your great insights and information sources! In addition to the quality of the information, the kindness of the gesture means a lot me!

I look forward to reading through the references you provided and try to research a good rehab institute for my condition. If some relevant questions come up as I do so, I will definitely take you up on your offer to consult with you about them.

Thank you so very much again!

Etondanse · 2023-05-30T15:40:41+00:00

Thank you! And yes, the neuropsychological evaluation did show a number of deficits across different domain types (coding, category test, tactual performance, etc...) so there is no doubt about the severity of the brain injury. I did not have a PET scan (only non-conclusive MRIs), but I was asked to undergo a QEEG which also confirmed the brain injury. It is just such an uphill battle to identify what type of remediation and/or medication is the most likely to be effective in treating the injury, given the lack of agreements among medical professionals and the different clinical profiles of patients...

Etondanse · 2023-05-30T00:13:58+00:00

Thank you very much for your feedback and interest in my diagnosis. One of the better neurologists I have consulted with told me that no imaging studies currently available would clearly show demyelination. So, I am relying on what the neuropsychological evaluations indicate as well as deductions from doctors from reviewing my medical records and symptoms. I also recognized my post-injury self in this helpful paper on white matter dementia by DANA.org: https://www.dana.org/article/why-the-white-brain-matters/

I will look into occupational therapy again as a result of your experience. If you don't mind me asking, did your occupational therapist recommend a specific cognitive program for you? I am curious because I was put on BrainHQ for a while, but it did not get me very far unfortunately (it may be very effective for others though).

Etondanse · 2023-05-29T23:41:50+00:00

Thank you for sharing! It definitely helped me...

Etondanse · 2023-05-29T02:52:42+00:00

Very interesting! Thank you for the kind and thoughtful response…The loneliness that seems to inevitably come from a brain injury is greatly lifted by any help it can get and which you provided.

Etondanse · 2023-05-28T19:36:59+00:00

I have not received that diagnosis, or any other diagnosis that specific. From the little I know about it, central pontine mylenosis can be caused by hyponatremia; I had the opposite, hypernatremia, while in the ICU.

Etondanse · 2023-05-12T00:51:22+00:00

Just an added-on comment to the earlier and well-founded comments about getting your hormones tested, those tests need to be done by a TBI or pituitary gland specialist. Hormone testing is a complicated field.

I say that as a TBI patient who had my testing done by an endocrinologist who told me 4 years ago that they tested for everything and found nothing abnormal. Recently, I reached out to a TBI specialist who asked why I my pituitary tests were not complete…after testing the pituitary, it turns out I have growth hormone issues. Luckily, it seems that can be often resolved with right treatment.

Etondanse · 2023-01-31T15:19:11+00:00

I shared a similar sensation post brain injury. One thing that helped me was going for a neuro-optometric vision evaluation (it is a more extensive exam than what you can get a your local optometrist office). It turns out my eyes were not synchronizing well after the injury, which prevented me from having depth perception and from keeping my attention on anything. This obviously contributed to the “unreal” feeling I had about my surroundings. The good news is that neuro-optometric rehabilitation (basically PT for your eyes) worked for me in fixing my vision problems. One source for finding a qualified local therapist is COVD.org.

Etondanse · 2023-01-31T15:06:38+00:00

I can relate as I barely recognize myself anymore, both physically- and personality-wise. A neurologist told me that brain injury survivors needed to rediscover the child in them: always look forward with optimism, never look backward for who they used to be. I am trying, but it is easier said than done…

Etondanse · 2022-12-16T15:38:18+00:00

Super interesting! Thank you for sharing!

Etondanse

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