PCS for 2.5 Years - Progress and Questions
 

Well, it's been 2.5 + years of major challenge since a motorcycle accident that left me with major long term PCS symptoms and nasty neck issues from whiplash. I have made significant progress, however still battle the daily struggle. I have tried just about everything you can think of for treatment (physio, neck injections, several neuros, specialists, CT, MRI, neck xrays, massage, etc). The only thing that helps moderately is massage, but is temporary. Taking over 1.5 years off of work didn't seem to be doing much for me, so I decided to go back around 7 months ago. Some days are OK, others horrendous. The constant fog, impatience, cognitive decline, lightheadedness and nausea are taking a toll. I try to stay positive, but sometimes very difficult.

I am client facing in my work, which involves visits to client offices, lunches, etc. I have had to pull back on booking too many appointments, as it sets off symptoms. I have found that my recovery after symptoms has gotten better. I am no longer ill for days following extreme onset of symptoms. More like hours and then I feel somewhat normal, but I also 2 years 7 months in.

Things that have helped me slightly over the years:

-I used to do hard weight training 3-4 days per week. Since the accident I have had to give it up completely. Upon trying to do 2-3 sets of light weight to test my endurance, I end up with 2-3 days of severe symptoms each time. I now refrain from all weight training and my workouts consist of brisk walks, etc. Nothing that will exceed my threshold. Listen to your body.

-Natural source Gravol (ginger root extract) for the daily nausea takes the edge off, without side effects. Highly recommend this for people who suffer from long term nausea. Completely safe and natural.

-Multi vitamin helps somewhat with long term recovery and lifting spirits through balanced vit intake, especially B's.

-Quality Omega-3 supplement reduces inflammation, overall good for the brain and provides a sense of better mental state.

I am hoping to get some feedback from some of you regarding my current most bothersome symptom. Each time I meet a client face to face, whether at their office, or lunch, etc I feel extremely lightheaded and disoriented for the first half hour or so. To the point where I have to excuse myself for fear of passing out in front of them. I'm sure a lot of you can relate, but it's the feeling of over stimulation from dim lighting, ambient noise, etc. Complete over sensitivity issues. It's still highly concerning and sometimes worry that maybe I am having a stroke or something. It really feels like not enough blood is being delivered to my brain. It has ruined my self confidence in front of clients and causes my to stumble through presentations (I try to now avoid) and even basic conversations. I have been bringing a co-worker along to meetings in order to take a break while they are talking, as it's still that bad.

Anyway, I am back in to a neuro chiro that my GP recommended, which will start next week. Hoping to make some progress there, but have tried so much now that I am doubtful. Any suggestions on people who have limited similar symptoms due to therapy/supplementation would be greatly appreciated. I really thought I would be further ahead at over 2.5 years. What a painstaking journey.

What is the actual B vitamin and D-3 content of your multi-vitamins?

You are not alone, we are all suffering from issues from concussion. We are all with you. :grouphug:

Well I experienced my worst bout of Vertigo in 2.5 years shortly after posting this. Got off of an elevator and the building fell like it was falling over. Caused major panic and didn't subside for hours. Slept all afternoon yesterday...Man oh man. Just when you think you have it sort of figured out...

Random,

Have you had your eyes checked yet?

When you say the building felt like it was falling all over it sounds very familiar. When I go grocery shopping the above my line of sight part of the tall shelves make me want to duck...they always feel like I am going to be hit by them and the colors of all the boxes and cans etc bounce around and overlap.

Crowded rooms leave me uncertain, the same room not crowded does not have that affect on me.

I went to a neuro optometrist this week and a bunch of those issues have been answered for me....my left eye is looking up and they do not track together now nor can they hold focus for long.

I did not know this but the eyes have a big input on balance, 20 % of the optic nerve system is linked to the ears and of course spatial orientation.

Just a thought.

Bud

I am reading this and feel a little embarrassed in a way to post since I am only 6 weeks out and fortunate from all I am reading. I am still not 100%; my husband says 75% but I feel fortunate. I am going to post anyway. Here is where I am.

Driving still a challenge. I tried last Sunday. Took my daughter on fairly straight roads to get coffee- not for me. I stopped where there wasn’t a stop sign; drove slow. Too much to think about. Had to rest for a few hours after. I had described all the things I was trying to pay attention to which I usually take for granted. My daughter said now you know how I feel trying to learn. :-).

At times it has felt very scary. I listen to my healing music and relax or if my husband around he holds my hand or holds me. I truly believe I will be back to 100% and of course when I have setbacks there is the fear of what if.

Its hard with extra stimulation. That pressure feeling comes and if I don’t go rest, I get cold. My body temp regulation is off at times. Sometimes I think I am like an old person. Feels like my house is my safe space. We have moved. My husband got us help our previous housekeeper and her husband. They were a G-d send. They were like my hands and sometimes mind and patient. Gave me something to do.

I ventured to the gym Thurs - my husband dropped me off and came back and got me. I was totally overwhelmed. I worked with my trainer on simple machines - didn’t do much. Sometimes I closed my eyes or just focused on one place. Came home & slept for an hour woke up completely dizzy went back to sleep for another two. Let much better. One of the trainers told my husband I looked really bad.

Other than that, I do not go out yet. Yesterday I didn't wear my ear plugs all day. I can watch tv and be on the computer within reason without headaches. I cannot watch if too much movement with light & sound etc. What I am realizing is I am not the best judge of me right now. When I thought I was at 85% -very astute Mark In Idaho- my husband told me I was more like maybe 50% functioning. I am taking all my vitamins by the way that you recommended and also another one a trainer who had a concussion recommended -German Creatin. Supposed to help the brain (not only muscles) during a concussion. It hasn't hurt me that I can tell
and I keep improving.

Thanks for listening. I am thankful for you all. So grateful for the support.

Your trainer is misunderstanding the value of Creatine. It reduces the injury if in the blood and tissues before the concussion. It's value when used after the concussion is not shown to make a difference in recovery. It does not appear to have a negative value during recovery. But, muscle building effort during recovery is not recommended as it requires the 'tear down and rebuild stronger' effort. This can flood the blood with the toxins from muscle breakdown. Not good during recovery. Just a note as it does not appear you are exercising to this point.

Glad to hear you have good objective support from your husband. His observations are valuable. You would do well to focus on small improvements. If you can maintain 75% for a couple weeks without causing a setback, chances are you will get to 80% for the next 2 weeks. 2 weeks is a common period of seeing improvements.

My best to you.

Louise,

I am off on temp regulation also.

Last summer I slept with sweats and socks...2 down comforters and 2 hot water bottles. This year isn't nearly as bad, down to 1 water bottle and 1 comforter for winter but I still get cold real easy and fast too.

Bud

Serious problems regulating body temp or sense of feeling warm can be tied to Thyroid malfunction. A full thyroid blood test is a simple process.

I would have temp swings due to reactive hypoglycemia.

This is actually something I haven't done in years and will talk to my GP about a referral the best she knows. Yes, the eyes do definitely play a large role in balance. What my vestibular system is lacking, my eyes are trying to pick up for. I close my eyes and feel quite off balance. I'm only 30 and docs are always reluctant to say that I may have vertigo as they say that I am "too young." I explain to them that my vertigo is related to head injury and not BPPV, which I have tested negative for twice now.

@Mark In Idaho - your comment about breaking down muscle and repairing/releasing toxins striked me and something I never though of seriously and a very good point, as I receive massage therapy for my very bad neck injury/upper back and trap issues. I have a vigourous massage the day before the bad vertigo bout as I was quite stiff. Although I have been getting massages 1-2 times per month for quite some time, I feel as though it was more vigorous than normal, which I feel was the contributing factor to setting off the attack the next day. I felt great after the massage, but likely endorphin release to thank for that. Has anyone else had massage set off symptoms? The toxin release would likely explain why each time I do any sort of light weight training I feel sick for days after. Man, I miss working out....But I miss my health more.

This injury is just such a mystery, even 2.5 years later and endless docs, specialists, etc. It's obvious that docs need to receive far greater training on PCS, as we can all agree upon. The last Nero visit I had resulted in the Neuro saying "You still have dizziness and nausea daily? That's not normal...." Thanks doc. I think that will be my last Neuro visit. Although they provide a lot of value to a lot of patients in some pretty bad shape, it was useless for my symptoms and could tell there was almost a lack of belief of the severity of what I was explaining. My GP has been the only one that has stood by me, believed in what I was explaining to her with genuine concern and helping me along. For that I am appreciative, but hoping more awareness and learning comes to the subject, as it can completely change people's lives, which has been my experience. Hoping as more mainstream content (Concussion movie for instance) brings more awareness and research. Until then, I will continue the fight.