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.

I am also from Alberta, and this winter has been very difficult for me as well. It's been a very mild winter so I worry if I'm not better by next winter it may be even more difficult. Head aches, ear pain, depression and anxiety...they all were at their worst in December. I'm 10 months in and looking very forward to summer. Today is not a very good day for my head.


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Joanne,

I was very glad to see last spring arrive and be able to warm my bones....this winter has not been as debilitating to me.

Hang in there!

Bud

I feel for you both (Joannetb and rg). Temperature change also severely affect my symptoms. Extreme cold to hot to cold etc., To be honest rg, just keep pushing myself (especially in front of computer), stress, business challenges etc., what may have delayed/delaying my recovery. I tried lot of therapies and if I did nothing and just focused on therapies may be I would have been better.

I should have applied for disability and sit back (but I wouldn't have gone to all expensive therapies). But I was too confused, depressed and doctors didn't give me good advice on applying for disability and instead encouraged me to go to work. Also the financial situation.

You are into 3 years too. If you think being in the beach helps, then take few months off and go to beach and see how it works. About flight I thought it is going to be bad but turns out to be best (for me). Not saying you will be same but you never know.

Now I am taking a long break again after a year of work and spending all the savings which normal people think is a bad idea but I have to do for health reasons and I don't explain to people who cannot understand.

Joannetb : In Saskatchewan and Alberta I found summer always very short :) Hope this year you have extended summer because of El Nino effect.

You might try the study in NOLA under Dr Harch. My daughter's headaches greatly improved as well as her cognitive level. She did airbnb while there and loved New Orleans. Lots of free music. She is going on 5 yrs and did it last summer.

My best to you,

hopefulmom:

Is it hyperic oxygen therapy? Did the insurance cover those therapies?

If out of pocket how much does it cost? I did about 15 sessions in DC. Each session cost me around $100. I didn't see any improvement.

New Orleans sure I can try. Never been there and weather probably warm all year around.

Yes this is HBOT. The study was 40 sessions. If you are admitted into the study then the sessions are free but you pay for your lodging. Once we knew she was there for 2 months (after a few day of testing), then we negotiated a great rate in mid-town. She rode the bus, trolley or walked.

Yes it is hot there.

NOTE: Dr Harch has been studying HBOT for a long time. You have to be very careful to not get too much HBOT or it can cause more damage.

Thanks. Spending money for lodging is not an issue for me since I move around always.

As long the treatment is free of charge I can try it out. I didn't know too much HBOT can cause damage. That is news for me. :)

If Bangkok makes you feel better and airplanes make you feel better, you might want to try a place like Southern CA. I suffered almost daily with PCS for 8 years in WI and WA. I moved to San Diego area last fall, and have hardly had an issue and it has been about 6 months! It is amazing for me to go back to a normal life that I hardly dreamed possible anymore! If you want to read the details, look up some of my former posts on this forum.

Steve

A few years ago, a NT participant tracked his symptoms in various areas of the US and I think he found the southwest to be easiest on his symptoms.
Maybe somebody can find that thread.

Thanks for the information Steve and Mark. Interestingly, I have been also thinking about San Diego since my uncle (who is a doctor) and cousin live in Bay Area and always praise about California :) Why airplanes makes me feel better is still a mystery.

Bangkok is temporary escape and I don't see myself living here at least for now. This place can be overwhelming at times. Especially communication is a big issue and most of them speak only little English. But provide good service.

I am sure places like San Diego or even Phoenix can help. Time to move out of Washington DC this time for sure. Each time I think and someone offer me a good job in that area and I was not able to refuse. I am relatively good at what I do and can be productive if work environment is amicable.

I guess the taxes in Ca. Wouldn't be to big of a shock after D.C. and the drought that nearly destroyed my business appears over for now. Even my yard is green again!

Ca. Is a pretty place.

Bud

Thanks. Taxes not a big deal. I pay quite some in DC area.

I checked the apartment rentals in San Diego. Comparatively it is slightly cheaper than where I have been staying in DC metro area all these years.

San Francisco and ofcourse so many other expensive areas in CA where I dont even dare to look at :)

I am north of Sacramento in rice country.

Bud

I find that if I even travel north of Los Angeles and into the Central Valley, it is not as good for me. I made a map of the US some time back, and crunched weather data for a lot of cities. The resulting map forecasts how many "bad days" I would have in a given locale over the course of a year. I have tested 4 different locations on the map - WI, WA, AZ, and CA. It basically calculates the amount of barometric pressure swings and puts it in a visual format. It may only be of use to my situation, but I thought I'd post it again, as it is interesting at any rate.

Steve

Steve : Wow! You tested 4 locations !! What extent we all have to go through in managing symptoms :eek:

I am still trying to figure out. Also one more thing (of many things I have issues) is if I take a shower full head shower my symptoms (headache, dizzy, fatigue) ramps up. If I dont wet my hair I am some what ok. Anyone have shower issues?

Also when I sit in a chair I have put my legs up or I start feeling dizzy, headachy etc.,. I cannot sit in normal position in a chair for a long time. High chairs (like a bar stool) is somewhat ok than the normal chairs. For me standing is more comfortable than sitting. Is it something to do with the neck and blood flow?

I have some really weird symptoms :confused:

Doctors no help ofcourse.

My best explanation of the weird symptoms over the past 8 years has been that when the brain is not "happy", any number of small things can irritate it that normally should not be a problem - food, temperaure, sleep, stress, bumps, etc. My neurologist described it as being in a quasi-migraine state almost all the time; and in this state, you are affected by everything. Since being in CA, I have had very few issues - even with bumps which used to set me back for days. The other day I bumped the car up against a curb, and was expecting a reaction from the jolt, but there was nothing! It seems that since my brain does not have to face the constant pressure changes, it has more reserves for little things.

I have tried to put a number on how much better it has been for me here. In WI, I averaged 180 "points" of symptoms per month (daily log), and in WA I think that it was something like 70 per month. In the past 6 months in CA, I have averaged a 2! I feel like I am living a normal life again and am VERY grateful.

PCSlife, I also have issues showering--I usually take a bath. My head is sensitive to bumps and movements, BUT it has improved greatly with the use of curcumin and quality fish oil. I wear earplugs in the shower too to reduce the noise.

I've heard other people have similar responses with those supplements. Hope this helps!

Steve : that is very interesting about quasi-migraine state. I also think that unless I have other distractions like alcohol, massage etc., my brain is constantly struggling :)

2 days back I took a 3 hour flight and again I felt ok. This is even on a budget airlines but not crowded and quite a good flight.

JBuckl : Good you understand. I do use earplugs at times. Even this morning I took shower then mild symptoms showed up. I tried bath but sitting like that increased my symptoms so I gave up :)

Looks like fish oil may be the thing I need to give a serious try. I tried once and it made me nauseous. That is why I start eating fish a lot whenever I get a chance. I eat food with curcumin atleast once a day. Not sure that is enough.

Thanks for all the suggestions.

Interesting that you mention Tumeric. . . Watched Sandrine Thuret on her Ted Talk about the brain 'You can grow new brain cells." One of the many foods and supplements which support this - Tumeric. Knew of the omegas, blueberries but wasn't aware of resveratrol so maybe a little red wine? All things in moderation.

Here is a link to her TED Talk transcript. https://www.ted.com/talks/sandrine_t...age=en#t-93161

I'm posting the transcript because her accent makes it difficult for my brain to follow.

The interesting part about neurogenesis starts at 5:30. It lists all the ways to promote neurogenesis. Keep in mind that the research suggests only 700 neurons regenerate per day so this is not a 'build me a new brain this month' concept.

Anti-depressants show to increase neurogenesis but the chicken and egg question is not addressed. Does the reduced stress from lowered depression cause this (my belief) or does the anti-depressant have a bio-chemical impact on neurogenesis ? Either way, stress does cause a reduction of neurogenesis.

Thanks. I always been told we keep losing brain cells after the age of 40. On the same note I have seen quite a few 90+ people so sharp with their memory and thinking. All confusing :)

Interesting article. I can't follow the talk with that accent as well. I am used to many accents living in DC and at work place some accents are challenging to me. Even in USA accent if someone talks fast I ask them to slow down :) My brain gets so tired.