3.5 years and ongoing
 

Hello,

I wanted to ask to see if anyone has any recommendations. I'm currently at a loss and have ongoing severe symptoms for 3.5 years from a motorcycle accident. Lightheadedness, brain fog, chronic fatigue, infrequent depression, etc.

I must say that I have made progress over the years, but my lingering and most debilitating symptom currently being extreme lightheadness when in any setting with artificial lighting, background noise, etc. When mental focus is required symptoms intensify to the point where I need to excuse myself for fear of passing out. My vision also narrows and I feel as though I have a hard time seeing/focusing on objects. This has been ongoing and happens consistently each time I am in a restaurant, shopping mall, etc.

I have been reading on dysautonomia. A possibility in my mind. I also think that inner ear is a large part of it. I have arthritis in my TMJ now (diagnosed) from the accident and causes clicking, popping, ear fullness, etc. My neck is also a mess. Constant discomfort, aches, cracking when moving it, etc. So many possibilities, single or multiple it's almost impossible for a person who isn't well and already has a hard time focusing to get to the root cause and docs are not helpful.

Any suggestions appreciated. Wondering if vision therapy is worthwhile, or if the source could be mostly neck related (one thing I haven't done is chiro - but wondering if safe given the extend of my symptoms/neck), or whether it's just a brain injury I will need to deal with for forever. I just wish I knew how to narrow down the main source of the issue so that I could focus on it. I have no idea what additional avenues to seek. I have been to several docs, tons of tests, etc. Most recent being another MRI 2 days ago on neck/brain. Waiting for results. Just about done with this sh***.

Too bad you already had the MRI. A SWAN MRI would have been interesting.

I've probably said this before but my first concern is your sleep. Sleep can be impacted by your neck or other discomforts.

It sounds like your brain is being overloaded. Poor sleep makes your overload threshold much lower. The original injury may have also reduced your overload threshold, maybe permanently. But, you can maximize your threshold with an understanding of your brain's limits.

What are you daily activities ? What activities/tasks cause you the most struggle ?

Yes, when PCS runs into years it becomes more than irritating! Reading about your neck how's your posture? Keeping your spine straight may help a lot in relieving discomfort, I know it's had a positive effect on my crunchy neck. I'm thinking of trying tai chi to release tension. I tried a chiropractor but it didn't help, gentle massage and heat helped a little.

The falling unconscious episode sounds worrying, was a cause ever given for this?

I think limiting stimuli, eg limiting computer work, TV and intense conversation etc, just doing light exercise for a month and seeing if it helps. Getting mentally in the right place is important too, don't be hard on yourself, don't watch the TV news (too depressing), do some activities like easy walking, gardening, painting - mindfullness stuff, it gives your brain time off. I rebuilt a VW beetle engine it really helped my anxiety being absorbed in manual work. Good luck.

Hi Mark,

Yes, 2 MRI's now over the past 3 years, most recent one I am hoping to review with my doc next week. Last was "normal." Can't say I've heard of a SWAN MRI.

Sleep is usually good. Most days I get 8-10 hours. I find I feel at my best if I sleep in late in the morning until around 11AM. That said I am usually up until Midnight. When I don't get at least 8 hours, I am useless the next day and symptoms are 50% worse.

The brain is certainly overloaded in any public setting with artificial lighting/ambient noise. Overload is the perfect explanation. I have worked to understand my limits and back off when symptoms come on.

I run my own business (since pre-accident) and have been struggling to keep it going as it's very demanding on the sales/support side. I usually only work 3 hours a day now (at most) as that's all that I can handle. A big part of the job is meeting face to face with clients. This I now have to avoid at all costs, as presenting in person, doing lunches, etc. is debilitating to me and causes the near fainting (or feeling of) stuff. Have been trying to complete most of my activities remotely from home, as I am able to handle much better, but also means that the business struggles. A source of stress knowing that I don't have a lot of options if this doesn't pan out.

I am also a single father, which can be hard at times when I'm not feeling well. The ex can also bring additional stress, due to lack of empathy. I feel as though everyone thinks I am making my symptoms up, or exaggerating them. I have lost some faith in humanity over the process, although trying to stay positive and not feel sorry for myself too often.

@SuperElectric - the near fainting is the most alarming, yes. If I hadn't had as many tests as I have had over the years, I would think that I was having a stroke and call 911. It's that bad when it comes on and consistent each time I subject myself to a restaurant and have conversation within someone. The brain just cant handle the stimuli/multi tasking anymore.

I find that light massage helps quite a bit overall, but the lightheadedness is still always present when in a restaurant setting regardless.

What I struggle with a lot right now is going at this alone, already confused and have exhausted a lot of avenues to try and figure this thing out, but can be very difficult (as you know) when you already don't feel well and have a hard time focusing on much.

If I could get the lightheadedness under control, I could make due with everything else, but that part creates a severe disability.

Random

You are not alone, although I understand how you feel. I have a good support system, and I still feel alone in this a lot.

I too experience the lightheadedness. Mine is mixed with dizziness and off-balance feeling. Sometimes it's hard to distinguish between them. But I do remember when I was working that being in meetings under fluorescent lighting and looking at computer screens a lot throughout the day would make me very lightheaded. I would go home at the end of the day and not be able to do anything but lay on the couch.

I do not know what the exact cause is, but I know that I have vision and vestibular problems as well as neck and jaw problems that sound similar to yours. Vestibular therapy has helped me a lot over the past couple years. I think that it helped my lightheaded and dizziness diminish over time, though is not a complete cure. I have recently started vision therapy and think it will be helpful. I am going to get tinted glasses to help with sensitivity to fluorescent lighting.

I have read that the lightheadedness is caused by your brain getting overloaded and trying to figure out all of the stimuli in a setting like a professional meeting or restaurant. I think it is some kind of combination of eye movements, lighting, neck and jaw disfunction and an added bonus of anxiety that an injured brain creates. I have also found that I am very sensitive to heat now, and that even being in a stuffy room can increase the lightheadedness. It is one more thing the brain has to try and deal with.

Right now I am trying the vision therapy and tinted glasses, as well as some nutrition therapy. If this does not help enough, I will probably start investigating the neck/jaw issues more. Chiropractic is not for me. I saw a NUCCA chiro for a while and it was not helpful. I have been doing PT and massage, which helps some. But there are other things out there that may prove to be more helpful. My integrative doctor recommended a special dental appliance to me to help re-align my jaw, cranial and neck bones. It seems promising to me, but may not be for everybody..
Periodontal Disease and the Arsenic Connection
ALF Orthodontics

There is also this alternative that others have talked about on Neurotalk...
Chronic Neck Pain - Cervical Neck Instability | Caring Medical

I know it is overwhelming and frustrating. I try to just try one or a couple things at a time, and then if they don't help, move on to something else. I have heard that it can be finding the right therapies that finally helps you heal. I try to balance the search with a lot of anxiety calming, relaxation and even some fun ;)

Does sound like we are dealing with very similar symptoms. Neck/jaw have been a big issue for me as well. A lot of clicking, cracking and discomfort/sensitivity in both since my accident. I saw a TMJ person who told me that I have arthritis in my jaw as a result (I'm 30). Advised I get a dental appliance and take a heavy dose of glucosamine + vit C for 6-12 months. I already take a lot of C and couldn't find a lot of evidence supporting the glucosamine. I felt that he was a little off from a professional/personality approach (got the feeling he was in it solely for $$$$) and quoted me over $2500 for CT's/dental appliance. Although it may be different, I went to my dentist and he sized me up for an appliance for $600, $450 of which covered by benefits at the time. I have been wearing it daily for around 6 months now and have noticed little change unfortunately. It does help to reduce the discomfort in my jaw muscles for the most part, but the TMJ is still a mess. Open to advice on that end as well.

If you would like, feel free to PM me and I will give you my phone number in case I find something that works, vise versa if you find something. Will still be sure to post on here as well for everyone else.

For now, I am trying to get back in with a Neuro, as well as a contact that I have at a brain center in my city to see if they have any further advice. I am also going to try to seek a Nero Chiro as a last effort to see if that helps. My neck is always stiff, sore and my symptoms are worst when the neck is flared up. Massage helps a lot, but very temporary. Toughest part about this all is (as you know) there's nothing evident on tests that would help to show any issues, at least for me so far and makes it hard to justify when people/insurance companies want proof.

Prolotherpay looks very interesting as well. Thanks for sharing. I will be looking further in to that.

random, Why are you usually up so late ? What are you doing ?

Research suggests that sleeping late is not good, especially for the brain injured. You should try to maintain the same sleep schedule and focus on quality sleep. The need to sleep so long suggests you are not getting good quality sleep with full cycling through the stages of sleep. A sleep specialist may be worth a consult. If you are not experiencing good REM and slow wave sleep, you will not be refreshing your brain.

A FitBit could provide some insights into your sleep.

MRI's rarely pick up the issues that are problematic. The resolution is not fine enough. The SWAN MRI uses special software to process the signal that allows it to show fine bleeding issues.

Mark -

What exactly is a SWAN MRI and what would it help diagnose for the brain injured?

Random -

The dental appliance I referenced is probably a bit different from what you got. (If not, let me know please). But it is an appliance developed by a dentist and an osteopath. My doctor described it as a cross between osteopathic, dental/orthodontic and chiropractic medicine.

I will keep you posted too if I find any revelations! Thanks.

Google SWAN MRI. It looks at vascular structures. Dr Cantu in Massachusetts uses them with concussed patients.

I think it is more valuable for acute symptoms.

I have always been a night owl (almost midnight while I post this). I have a hard time sleeping any time before Midnight or so. Something I need to work on regulating better. I do find that most nights I sleep quite sound, without tossing and turning. That said, I may not know if I'm not sleeping well. I also do find that when sleeping late 10:30-11AM after falling asleep at Midnight or so I do feel at least 25% better than if I get up at say 8 or 9AM. I struggle big time with chronic fatigue since the injury and some days a walking zombie in a heavy fog. I may need to look in to stepping up my vitamins to a higher dose based on your regime. That said, I have the luxury of chronic stomach issues along with PCS, which limit my tolerance for vitamins without getting nasty stomach pains. I can currently only tolerate chewables.

I think I have narrowed down a good (highly reviewed) Neuro Chiro near me. I am going to book an appointment tomorrow. I'm somewhat excited about this one, as he looks promising. Will have to keep you all posted.

@RollerCoaster

The appliance that I have is a plastic like material, sized by my dentists via impressions to assist in relieving pressure on the jaw/TMJ region by allowing enough space to avoid teeth being in direct contact and to help avoid any clenching. I can say that it has helped slightly, but nothing amazing. Yours sounds much more comprehensive. I really just didn't want to drop almost $3k on consulting/CT scans of the TMJ/appliance. It was excessive, none of it covered by benefits and the physician came off as very sleazy to me, or I would have considered more seriously. He didn't listen to a word I said and wanted me to book several expensive follow up appts and "long term" care. He wanted almost $1500 for the appliance alone, which looked verbatim to the one made by my dentist for $600. They took their time with impressions to make mine. May look around at more TMJ contacts after I give Neuro Chiro a go.

The sleep specialist I know said the important part of good sleep is the time you get up in the morning. The brain controls the sleep cycle and rarely uses much sleep beyond a hour or two after first light in your room. I have always been a night owl (it's 1:15 am) but I wake up routinely at 8 to 8:30, sometimes 9 am. She said there definitely are night owls and early birds but early birds get up at 5 to 6, maybe 7 while night owls should be waking up 2 hours later or so.

But, she said the most important thing is to sleep the same hours and times each day so the brain's sleep clock is not disrupted.

What vitamins are you taking already ? How much Vit C are you taking ? The B's are the most important plus good fish oil.

btw, Stomach issues can manifest from lower neck injuries. CT's and MRI's rarely show these subtle neck injuries. Some specialists can diagnose them with chiro or osteopathic techniques. Other times, you need to try a treatment protocol and stay with it for a time to see if things improve. Prolo therapy can help if the therapist can first diagnose the problem location. No use treating an area that is not injured and miss an injured area by a few centimeters.

I saw a TMJ specialist who wanted to sell me an expensive appliance, but I finally found a physical therapist who used in the mouth pressure points and such and helped me get relief. I was locked to only an index finger width. She got me to two fingers width and over time, I am almost three fingers width.

For clenching, there is a Botox protocol that weakens the jaw clinching muscle to allow healing. I was about to try it when I found the PT.

Yeah, I have been dealing with small intestine slow motility for over 10 years. I used to have terrible asthma as a kid and was frequently pumped up with several meds from 7-13 years old. Was in critical care on more than one occasion. I think that all of the cortico steroids and misc. other drugs may have impacted my central nervous system over time.

I can currently only stomach the Centrum multi's at this time. I top up on extra complex B's and C's most days and I regularly take a high quality Omega 3. I do find sometimes though that the Omega can make the lightheadedness a little bit worse. I can attribute this (possibly) to slowed heart rate/lowered blood pressure when taking the fish oils. I also take a high quality and expensive probiotic daily to help with the ongoing stomach issues.

The person I saw was also a TMJ "specialist" and just wreaked of used car salesman, throwing out scare tactics and rationalization as to why I need to spend thousands of dollars with him. He was horrible and in looking at reviews, I'm not the only one. Odd as he came recommended by a contact of mine. That's the other big issue with this stuff is that all of these alternative therapies/treatments come with some pretty shady people that don't give two sh***s about your well being, rather their own pocket book. Granted there are a lot of good people out there who really do care. I've seen both. The one's who only care about their own agenda really get to me, as they're wasting my healing time.

So, I saw the Neuro Chiro. Pointed out obvious vestibular issues and honed in on my left eye being an issue. Tracking an object coming towards my nose being the worst.

He did a series of eye tests, balance tests etc. with the help of software. Also took feel of my neck and concluded that he is confident that neck manipulations will help me immensely. Went as far to say that he only sees about 1 in 15 or so with PCS symptoms that he would recommend manipulations before vestibular rehab. This being one of those cases. He was very confident that although wouldn't be an immediate cure all, would help a lot based on his exam.

Now the difficult part...With all of the neck manipulation/stroke stuff online and in the media I have been getting worried about neck manipulations. Although complications appear to be extremely rare, I just want to ensure that I am taking precautions to avoid potiential long term issues.

Any insight on the safeness of neck adjustments and anyone have success with them? Supposed to go back soon and need to make a decision and the last thing I would want right now is more complications.

There are many different ways the neck can be manipulated. Some are very aggressive. Others are very gentle. The standard twist the head and pop the neck can be too aggressive for many. Either way, any neck manipulation should be followed by icing to contain any inflammation cause by the manipulation.

Thanks Mark. At this point I am ready to give it a try, as my neck has been pretty bad for over 3 years and based on his feedback, worth it. I believe it would be the twist and crack manip.

Will keep you posted.

Hi Random

Did you ever start the neck manipulations? How is it going? I am thinking about trying chiro again too.

Thanks