Two years after TBI with chronic and persistent problems
 

Hi all. I had a traumatic brain injury with loss of consciousness for a day or so. My injury is worsened by damage to nerves in the accident (severed branch of trigeminal nerve). I was a hot yoga practitioner before the accident. Now, I find exercise intolerance to be debilitating. When the room in yoga is cooler , maybe 105 degrees, I can function but higher than that, I seem to be unable to regulate and my heart races. My pain is constant 24/7 and I manage with cannabinoids and Tylenol to keep working. There is numbness from neuropathy, but the feeling like my brain is swollen is debilitating and can easily get worse if I try to do full expression of yoga. My brain pain feels like someone is wearing cleats and pushing against my forehead from inside. This is most of the time. When I overdo, add the feeling like my head is wrapped in a rubber band and pulled back in a slingshot at the same time. Hyperbaric Oxygen sounds interesting but I am losing my job and insurance. Is it expensive? Are the results fleeting? Please let me know. So many days, it is hard to even lift my head from a pillow. It feels heavy. There are other problems classic for the persistent post infusion syndrome. Any other ideas?


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Hi YoginiM

Welcome to NeuroTalk :).

I hope that other members will be able to support you and answer the questions you have raised (I know very little about TBI/PCS).

All the best.

Hi dear friend, I can only share my experience, please take it or leave it... :) I had a concussion from a car accident 2.5 years ago. I only got out of nerve pain recently, and it was because I changed some key things.

1. Functional neurologist - this was huge for me, she helped me make huge progress.
2. Hyperbaric oxygen - I was in the US when I started this, and was able to find a Groupon for this.
3. Supplements - MCT Oil was huge for mental clarity. Next big positive break was Turmeric, which was really great for dysautonomia nerve pain; I make a tea with fresh chopped turmeric twice a week. CBD Oil (non-thc) was great and got me to the next level of mental clarity, and consistency.
4. Cranio-sacral therapy. Twice a week, I might ask for a sliding scale if you've lost your job.

I have a whole list of supplements that really helped, but I have to say that my exercise sensitivity is still there, and I avoid bicycles or anything that could re-trigger a concussion. I go on 45+ minute walks every day, but I haven't been able to do much else due to dysautonomia. Pain and mental clarity were my first items to tackle! Exercise is next :).

If you can't tolerate exercise then it's best to not try, you can't push through PCS it just means you'll take longer to recover. Did you injure your neck or get whiplash when you were concussed? I'm wondering whether an anti inflammatory like taking turmeric would help but I think I'd avoid caffein and salt and anything else that raises blood pressure.

A turning point for us was vestibular therapy. A key component was getting the heart rate elevated during the therapy. The therapist closely monitored heart rate and headache pain ever 5 to 15 minutes. If the headache spiked more than 2 points during the exercise (using the standard 1 to 10 pain scale), then it was time to take a break. If during the break, the headache dropped 1 or 2 points, it was then ok to continue. For this particular case, after the 4th session, the improvements in balance and stamina really started to show up.

The latest studies for children are supporting very light exercise, even if its just walking. Supplements, especially fish oil and MCT are crucial.

Hyperbaric does help and is expensive, probably $50 and up per session for a soft shell, more for a hard shell chamber.

I recommend the supplements and very moderate exercise closely paying attention to your pain level. Do not try to push through the pain.

You cannot willpower yourself through a head injury.

I have had a similar problem to you. Same exercise intolerance and facial numbness (trigem8nal nerve). Also coincidentally lost all my muscle weight after the Injury(believed to be temporary pituitary damage) and cannot exercise to try to put it back on. Be very careful not to hit your head on anything or else you will just get worse and relapse. Try the buffalo protocal to help return to exercise, it worked for me in the past, but rlepased after a minor head bump. Ive had success with vitamin b, exogenous ketones, and a super expensive supplement called cover three (has made it worth it though). You may even have to start the protocal with a simple exercise bike and keep your heart rate below headache threshold.

Thank you.

I have used Turmeric and Boswellia a lot, but my stomach can’t tolerate Turneric anymore. One turmeric supplement I took about a month after my injury (a phytosome version) caused me to pass out but other forms were helpful for awhile.

I could do a better trial.of MCT oil. Thank you for encouraging that.




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I was able to exercise well for the first year. During that year, my main issues were facial neuropathy from damage to a branch of my trigeminal nerve likely severed when I was scalped in the accident.

After about 11 months, my ability to handle hot yoga rather suddenly seemed to change. I was unable to afford thc/cbd for about a year. I also was unable to afford yoga. The pain was terrible that year. I took large and frequent doses of OTC pain relievers to make it through day and night. When I resumed yoga, my exercise intolerance, dizziness, confusion, disorientation, and heavy headedness (feels like a swollen brain) was debilitating. Any temperatures over 104 seem to worsen it. I crave cold temps on my head.

Since I resumed THC and CBD, my OTC pain reliever use is lower.

I am very preoccupied now on just getting through the day without hurting too much.

As far as neck injury, I don’t think so. I woke up after the accident. I don’t know how long I was unconscious. I called for help and I fell.unconscious again in the ambulance. I was.in a coma or unconscious in and out for a couple days.

I am now without any insurance or income. Maybe next year I will have a way to get a brain scan. I have never had scans after my crash.

My blood pressure is historically very low, not higher than 110/70. My diet is unusually low in salt. Caffeine- I generally cannot tolerate caffeine or energy drinks. I have forgotten what happens with energy drinks (my memory problems from the accidrnt) but I did indeed identify ingredients in UpTime energy drink and Sport Oxylent energy packets as being particularly detrimental for me.


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Thank you. I have noticed my heart seems to dysregulation when I get warm and can take hours to calm down and recover. I look forward to someday having resources for medical care.


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Thank you. I will look into all of that.

I wonder if a head injury I had in third grade in the same area that I now hurt made the insult worse decades later.


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