Originally Posted by YoginiM (Post 1268226)

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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Originally Posted by SuperElectric (Post 1268804)

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.

Originally Posted by rgthree (Post 1268808)

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.

Originally Posted by swampmonster14 (Post 1269486)

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.

Originally Posted by YoginiM (Post 1269493)

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.

Originally Posted by brokenbrilliant (Post 1269514)

Past brain injuries can make things worse. And as you've found, additional symptoms can arise some time (months, even a year+) after the injury itself.



After my last TBI in 2004, I could not read more than a few sentences at a time. My memory was terrible, and I would forget what I'd read, just one page prior. This came after always being an avid book reader. It was a big change for me, but I was so turned around, I didn't notice how much I missed it. Now I do read, but it can be exhausting. I'm better off reading research papers, which are short and focused on a narrow set of ideas. I also read online - blogs, articles, lots of short pieces, with the occasional "long read". But my dreams of going back to school and finishing my degree are pretty much impossible, under my current conditions.



We often lose the things that used to be a big part of our identity, before our injury. Finding a way to recognize ourselves (and our reactions) afterwards is an important part of our return to a quality of life that feeds us.



For me, I found my way back (over the past 14 years) through blogging about my experiences. It keeps me honest and it keeps me sane. It's not always pretty, but it's real. My recovery has largely centered around A) getting enough rest, B) daily exercies of some kind or another, C) having someone supportive to talk to on a regular basis, and D) paying attention to what I do each day to develop new routines and rituals in my daily life.



For you, I recommend steering clear of anything that makes your headaches worse, even if it's something you once loved to do. It may come back to you, eventually, but being rigid about forcing yourself to do things can set you back. Make sure you rest enough and you get good fats in your diet. When I started supplementing with MCT oil and making sure I got good fats in my diet, my brain came back online like it hadn't been, in quite some time.



Best of luck to you. Stay steady. Stay strong. You can get there.