After 6 years and still............
 

Hello all,
Been a while I logged in. I had an mTBI (Brain contusion) then followed the PCS. I was recovering for the first 5 weeks after my mTBI and then all went crazy with typical symptoms (head pressure headaches, off balance, fatigue etc., etc.,).

Initially on company disability then they denied. So after few months got a job to work from home and did that for 3 years. During the course tried very many things including medications and too many to list. Very expensive therapies too like Neurofeedback (couple times), Vision therapy etc., etc., Only medicine helps is Xanax. I am on minimum dosage everyday.

One thing which came back is my smell and taste. My smell almost gone after the injury and now slowly it came back close to normal. Neurofeedback might have helped on that one.

My symptoms go up and down on a daily basis. Rather say improved I learnt/learning how to manage. Tough. Then got sick and tired of being at home and took a flight to Bangkok (business class) few years ago and if I die it is ok. Interestingly my symptoms almost disappeared while on the flight and once I land symptoms always creeps up. Then took another international flight and symptoms disappeared again on flight.

Tried alcohol and went to a club and danced. I was at my best dancing while under alcohol. I can walk, talk, run, bend and everything. I just did this to see what happens. It was bit risky ofcourse. I can easily bring my heart rate up for hours and no issues. No headaches, dizziness and i can move faster even than so called normal folks :)

Then went back to work in office setting and managed for 10 months and all my symptoms came back with vengeance. Quit my job and took a flight to Bangkok (no symptoms on flight again).

Massages in Bangkok helps quite some and try to get as frequently as I can. Otherwise only alcohol helps but I don't like the hangover and I don't like drinking as well. If I go out now (mid afternoon) all the people, traffic etc., overwhelms and feel like fainting, headache, fatigue etc., During nights I always feel much better anyways so I do my activities during night.

Sitting in Bangkok and wondering what should I do. I still suspect something to do with inner ear or] (may be neck). I asked this question to Neurologist and other specialists why I feel better in a flight and when I drink (something like MDDS: Mal de Debarquement Syndrome)? No one can answer.

Yes, as with any TBI my case also unique and frustrating :) What next?

Maybe you should get a job as a pilot :D

lol. :):wink:

I am three years in and odd in that when I consume 2+ alcoholic drinks my symptoms almost disappear completely as well. I have only done it 2-3 times, but each time my symptoms vanish and stay gone for up to 2 days. What I find though is that a week later I sometimes experience symptoms greater than what they had previously been. There must be a correlation with the brain injury/neck injury and blood flow to the brain.

Blood flow to the ears too. For me cranio sacral therapy works to some extent. I think that is because they tilt my head and increases some blood flow. Anyways it was all temporary.

Few months ago I had some cold, flu and bronchitis. I took some Antibiotics and Mucinex DM. My post concussion symptoms disappeared greatly.

Antibiotics brings down my headache which I found even few years ago. Mucinex DM helped with my unstable feeling.

I even went to a GastroEnterologist and see what he has to say. He is very good but still doesn't think there is a connection.

Oh well, it is all confusing and at this point I am tired and some what depressed too. One thing I still contemplating to try is medical marijuana. I am thinking to move to California. Though it is a big decision since it shows in the system for years and with my job nature I will not pass medical. If I am on disability I sure will give it a shot. Nothing to lose for me anymore ;)

Yes, the blood flow is definitely a problem. I constantly feel pressure in my ears as well most days. I have tried betahistine (serc) - an anti vertigo med that works to increase blood flow to the ears and helped moderately. But like I said, I have a few drinks and my symptom are gone 100% aside from tinnitus.

I would strongly suggest staying away from marijuana. I tried to experiment with a very light dose and each time made my symptoms worse for days, including substantially worse and prolonged fog than what I usually have.

Can you try serc?

I tried serc for one month in the beginning days. Helped little and me very drowsy. Again I tried few years ago and it made me very sleepy and worsened my symptoms :)

I learnt to ignore tinnitus now. It is always on my left side. Only in quiet settings it gets very much amplified ofcourse :) Xanax brings down the tinnitus too but tinnitus is not an issue for me anymore. Atleast at this point.

I don't like drinking alcohol so thought I try marijuana. Looks like didn't work for you. As I said I really don't want to take any of this stuff.

But right now I am in a desperate situation. 6+ years daily head pressure headaches, dizziness, fatigue etc., Took a toll on my body and brain. No permanent solution and all temporary. I did my best to get out and do things and at times push it too. Not sure how long I can lead this terrible life.

Totally can relate. I have all of the above symptoms you mentioned. So bad that I can't hold a 10 min conversation in public without feeling like I am going to pass out. The fatigue is also a major issue. I don't know how anyone can properly work full time with PCS.

Serc didn't do a lot for me either, which is surprising given the mechanism of effecting blood flow to the inner ear. You would think that it would help more for dizziness/vertigo related stuff.

I too am starting to wonder if I will ever get better, although half as long as you have had to deal with this hellish condition. I will definitely let you know if I find anything else that works for me. Something that does anything for me at this point I am interested in.

If you haven't tried curcumin yet (most absorbed part of Turmeric plant), try it. It has helped some inflammation for me and also helps a bit with depression. Although mine is mild, the depression can get out of control on bad days.

I do find that summer is much easier on my PCS and symptoms reduce by about 30%. It is very cold here in the winter and affects circulation. Do you find the same?

Just to feel normal again...

Funny you mentioned about cold. Main reason I leave Washington DC in winter these days because of my symptoms. When cold air hits my face and head I get immediate headaches and stop me on track.

I lived in DC for so long and have friends, doctors and other support network I kinda reluctant to leave so far.

Bangkok is super hot and I dont really mind and symptoms sure are less but not gone ofcourse. But once I get back to USA I am moving to south where it is warm all year around. Since so far I was able to do international travel and had a flexible job. But now can't do it anymore and it is kinda getting tiring and expensive too.

About serc, yes it was disappointing for me too. Didn't do much for the symptoms. Today my symptoms gone up and so I wear ear plugs all day :mad: I am almost tempted to drink tonight but I hold off.:)

Holding conversation I totally understand. I even sometimes felt dizzy in the past just looking at someone and talking. Not that bad nowadays but after a meeting no matter what I will be exhausted and come down with a headache especially if it is a small room with bright florescence light.

I tried so many things and don't remember I tried Turmeric. I eat spicy asian foods which sure has some of it and spicy food helps with my headaches too :)

Yes, winter kills me. I am in Alberta, Canada and talk about harsh winters. Some days are -30+ below Celsius. The shift from being outside and then going inside in that temp difference kills me.

I have been avoiding flight, as I think the landing would cause severe dizziness, but would love to sit on a beach somewhere. I know that it would help my symptoms.

After I posted last night, I couldn't sleep for the life of me and ended getting 3 hours of sleep. Tried to work, brain was completely off so I slept for 3 hours and have done nothing all day. The productive meter is on the low today.