Medication for TBI

[FWASHO]

Hello,

I had a TBI in July 2019 and am still experiencing cognitive fatigue so my neurologist has prescribed me Modafinil to help with symptoms a little bit (alongside behavioural strategies). I've have found this has been quite overstimulating. Has anyone tried other medication for TBI and found it helpful? Thank you!

[cat3]

FWASHO, we're not supposed to offer medical advice, but please can you tell us whether your neurologist has explained their grounds for prescribing Modafinil ? If it's to mitigate the fatigue then I worry that it's like using a sledgehammer to crack a nutshell.

Fatigue is top of the list of Bi after-effects and usually a symptom for management rather than intervention. The passage of time is a vital factor in the rehabilitation and adjustment processes, and you're far from reaching an equilibrium at only 8months post Bi.

From what I've learned of brain injury, overstimulation is the last thing the brain needs whilst recuperating. Maybe get a second opinion regarding the med ?

Cat x

[FWASHO in reply to cat3]

Thanks Cat. I think the rationale is that despite implementing lots of strategies my recovery has plateaued, and medication which might reduce brain fog and help with attentional difficulties could improve my general day-to-day functioning. There is some evidence base for it but I think it is too much for my system, has caused headaches, nausea etc. (which happens for a small proportion on people I believe).

I feel a little deflated as thought this might make things better so was just curious if other people have tried different pharmacological treatment in similar circumstances to me. I'm not one for medication generally but sometimes you get so exhausted of having to do all the hard work for your brain to recover, and by hard work I mean remembering to pace yourself and manage expectations!

[cat3 in reply to FWASHO]

It can take anything between 1 to 3 years to plateau so feeling you've reached your maximum potential might simply be a combination of impatience, and burnout from trying to achieve too much too soon.

I recall how hell bent I was on proving the specialists wrong, and to be back to normal (socializing/driving working etc) within weeks ; I even ordered a new bright yellow bicycle to show I meant business.

In fact .......the bike was garaged for12 months, and even 8+years on I still get meltdown if I push too hard ! It's a big learning curve getting used to a different version of ourselves, adjusting to new limitations and letting go of old habits.

You'll get there sooner if you heed what your your body's telling you. Test your limits but don't exceed them, especially with the use of any stimulants.....

Take care FWASHO, and all best wishes. Cat x

[sca2013]

cat3 is right on with all she has posted here. What she is saying has been my experience exactly. It took me about four years to finally realize I needed to adjust my expectations about getting back to what I thought my normal should be and realize I needed to instead adjust to my new normal. This included things like managing the use of the amount of energy I had. What this turned out to be for me was to do my highest level of effort activities in the mornings, not to exceed about 3-4 hours per day, maybe 4 and sometimes 5 days per week. Don't go out to activities at night. Stay away from crowded, noisy places and lights. Have an escape strategy to leave situations that are just to sensory overloaded or when I get fatigued and zone out. Wishing you good luck going forward.

[SillyPhil]

Hiya.

I had my TBI 22 years ago. I can safely say that I reckon I've plateaued by now! I am prescribed Modafinil for those days that I just HAVE to push-through the daily fatigue, confusion, brain fog, irritability etc. I don't like taking the tablets as they make me feel as if I've got jet-lag and have had far too much coffee - knackered but hyper. I know that if I DO take a tablet I am depriving my brain of the rest that it needs so I try to only take one once or twice max per week. Otherwise the fatigue builds up and I start to feel unwell. Go steady with them - and if you DO find a better alternative please let me know.