Undiagnosed : Brain fog, light sensitivity, neck stiffness, headaches, and other issues
Posted , 17 users are following.
All,
I'm a 27 year-old, active male with no real previous health issues besides asthma. About 2 months ago, I started experiencing symptoms seemingly around the same time:
- Neck stiffness on the back of both sides of my neck (if I turn my head, I sometimes experience a shooting pain up to the top of my head, on the right side only)
- Extreme light sensitivity and blurry vision issues, especially when it's dark (I'm more bothered by traffic lights, car taillights, fluorescent lights, etc. than a TV screen)
- Cognitive issues I could best describe as brain fog (having trouble speaking as fluently as I used to, finding the "right words", memory issues, feel like I'm "floating,", etc.)
- Headaches, especially after trying to focus (my brain starts to feel like it's running "hot," almost like it's overheating)
- Fainted for the first time in my life last week. Urine also seems darker - wondering dehydration.
- General fatigue, no motivation or excitement for things I've previously enjoyed, etc.
These issues have been putting a massive strain on my life. I can't describe how frustrated and hopeless I feel when the symptoms haven't gone away after 2 months. I don't feel like myself at all and it's been extremely difficult maintaining any semblance of a balanced work, social, and personal life.
So far, I have done the following:
- Standard blood and urine labs with primary care doctor: only issue discovered was slightly low vitamin D which I have been supplementing since then. Also checked for Lyme disease which came up negative. No outstanding theories.
- Eye test at optometrist: slightly less than 20/20, have been wearing prescription reading glasses since then to alleviate strain when working on computer. Did not think that eyes were root cause.
- Chiropractor: Receiving back/neck adjustments and stim/muscle work. Have experienced slight relief with neck pain but overall stiffness still persists. Chiropractor's theory is that neck is causing issues with the nerves running up to my head/eyes. I am 6' 3" and have admittedly always had horrible posture.
- Neurologist: Did binocular eye tests, neck ultrasound, other tests (not even sure what they were for). Got brain MRI which came back normal. Prescribed amitriptyline and topiramate which didn't help and I have since stopped taking. Neurologist's original theory was tension headaches, which I was doubtful of. When I first started experiencing these symptoms, I wasn't really getting headaches. It was more of a constant brain fog vs. a traditional headache. The headaches seem to come when I try to focus or am in public for a while.
- Infectious diseases specialist: no real theories. Also tested for Lyme which came back negative.
A few other thoughts and notes:
- One of my main outstanding questions is I'm not sure if the neck issues are a symptom or the cause. I've continued going to the chiropractor in case it is the cause, and it's the only symptom I've really felt any relief for so far (although I'm not sure if that's from the chiropractic work or the naproxen that I started taking around the same time)
- Having difficultly falling asleep at night. Seems like I'm almost seeing a light visual snow in dark rooms.
- Caffeine/alcohol seems to affect my brain way more easily than before. A small amount of coffee will zonk me out or I'll get drunk off of nothing
- Blood flow issues possibility? There was one time I was sitting down for a while recently and my feet went completely numb, number than they ever had before in my life.
I feel like I have a tough time presenting my symptoms to a doctor given that some of them are vague. I should also note that before these symptoms started, it was the least stressed I had ever been at work and I've always considered myself to be a confident person, so I really don't think this is a mental anxiety, depression, etc. type issue. I can't overstate how physical these symptoms are (although I realize mental issues could lead to physical symptoms).
I'm not even sure I'm posting this in the right group given that the problem is undiagnosed, but this has been ruining my life. I want my life back! Would really appreciate any help, advice, or suggestions, as I don't know where else to turn. At this point, there really aren't any outstanding theories from any of my doctors. I'm planning on getting a neck MRI and going to an ENT this week to make sure sinus issues aren't causing this, but really not sure how to move forward otherwise.
0 likes, 19 replies
M78952 PatientP
Posted
Hi
First let me tell you that I am very sorry to hear of what sounds like some horrible symptoms that I can definitely relate to.
16 months ago I had a hemiplegic migraine and I passed out and had a temporary loss of speech and Paralysis on my right side.
My doctors specially my neurologist was so focused on the migraine that they failed to diagnose that in my fall I had shifted my head on my spine and had a serious Atlas subluxation at the C1 C2 area. And I sustained a pretty bad concussion.
For the two months that I walked around with my head dislocated on my spine I had many if not every single symptom that you had. What's challenging with your situation is that it sounds like they have performed many of the typical tests such as an MRI and x-ray of the cervical also known as neck region. You mentioned that you fainted I'm not too sure if anybody was there to witness you passing out or if you can figure out maybe from the way you landed if you landed back on your head or landed frontward on the side of your head as you may also have a concussion which really does not show up on those MRIs because I got a clean brain MRI with and without contrast and I had a severe concussion that my neurologist was just ignorant of.
I would still proceed with looking within your neck area as you may have a constriction of cervical spinal fluid that bathes your brain and that was a lot of the problems that I had as when they did finally find what the problem was I was at 10% physical and 10% cognitive and definitely had a lot of word Aphasia and could only take in one to two sentences at a time because my brain was so stunted from understanding the rest of the outside world. If there is something in your neck it can cause headaches it can cause lack of concentration it can cause pain stiffness anything else that you have experienced. I hear you're going to a chiropractor I found a lot of my issues were resolved with working with an experienced PT here in the states who deals with cervical issues spine issues and was a stroke specialist PT. If you're not working with a neck and spine doctor you may want to look further into that rather than your neurologist as my neurologist was clueless but my Spine and Neck doctor that I found was on target. Also look at a possible concussion whether that was with the fainting you had or if you can think back if you hit your head or had been in a car accident or had fallen that could also be a possible complexity to your situation.
Best wishes and I really hope that you can find some resolution to this and if my email may give you a little additional Direction. One more thing is I am just now starting at 16 months which you should probably look into this is neurofeedback. Dave will put a cap on your scalp with these electrodes and you will perform different activities such as working on the computer or watching a movie in they can see what parts of your brain light up and areas that are not lighting up and they map that against normal brains and prove Behavior such as retraining your eyes or triggering these areas of your brain to respond properly and effectively to what their visualizing and seeing. This was also something that was highly missed and my neck and spine doctor suggested I pursue this Avenue. My only recommendation is to get a referral or recommendation as it seems different practices just think they can do neurofeedback without the right credentials so you may have to sit through individuals who might not be as qualified as others.
M78952 PatientP
Posted
Also this may be a longshot but you might want to see if you have meniere disease that could be contributing to this but would probably not be the reason for your neck pain. Apologize for any misspellings I'm dictating this from the car.
EastCoast PatientP
Posted
gina55256 PatientP
Posted
I have to agree. Take a look at the website spinal health. I started googling my symptoms, everything you've just explained and more and I believe the root of all my symptoms is atlas sublaxation. A misalignment of the upper cervical area. Caused by a neck injury some 19yrs ago. The hardest part for me is trying to find a doctor that will listen as they always are trying to treat the symptoms like everything yoy mentioned above.
I suggest you take a look at the forum on spinal health and google atlas sublaxation. Its very interesting and I think once you read it, the light will turn on.
Good luck
gina55256 PatientP
Posted
I have to agree. Take a look at the website spinal health. I started googling my symptoms, everything you've just explained and more and I believe the root of all my symptoms is atlas sublaxation. A misalignment of the upper cervical area. Caused by a neck injury some 19yrs ago. The hardest part for me is trying to find a doctor that will listen as they always are trying to treat the symptoms like everything yoy mentioned above.
I suggest you take a look at the forum on spinal health and google atlas sublaxation. Its very interesting and I think once you read it, the light will turn on.
Good luck
gina55256 PatientP
Posted
M78952 PatientP
Posted
Hi all again,
In addition to my previous posts three months ago and the people who are now replying.
I just started vestibular physical therapy. The vestibular system is the size of a pea and it is behind your ear canal. And a lot of people who have suffered a concussion or have problem with fluorescent lights or flashing red lights were dizziness brain fog Etc. There can be a problem within the vestibular system.
Retraining your eyes is a big part of working within the vestibular system. It is allowing your eyes to track with your head and give you a sense of direction of being upright bending over looking left looking right. And it's probably not the cause of your stiff neck. But if you've had a concussion or if had some sort of damage may be viral to the vestibular system there can be a lot of issues that you experience.
My short duration so far with the vestibular has really opened my eyes to a lot of problems I was having with my motor skills dizziness being disoriented.
Please read all my prior posts and then this is what I feel is the missing link that I experienced that I just wanted to forward along to you all.
vote1forpedro PatientP
Posted
Hi there,
I hope things are getting better for you (they sound that way)
This is the first time I have read someone describe exactly what I have been going through. Especially the increased sensitivities (can't even think about coffee) and the intensification with prolonged focus. I have had all these symptoms for over 2 years now. I have been to 7 specialists (neurologists, opthalmologists, ENTs etc) and they have all disagreed, though the common theme has been some form of migraine (even though it has never responded to migraine treatment). The only thing I have in addition to yours is mine seems to be aggravated by looking through glass. I had to get my eyes permanently corrected because wearing lenses caused me too much pain.
I have asked repeatedly for a full vestibular work-up and referral to vestibular rehab but have been told repeatedly it won't help. I did my PhD in cognitive neuroscience so I know what to look for, yet the medical doctors aren't convinced. Have you had any electrophysiology as part of your vestibular work? I want to have a VEMP assessment but my last neurologist thought it was a waste of time. My hypothesis has always been a vestibular disturbance that results spasm of the head and neck muscles as they try to compensate, impaired coordination from poor proprioception (sensing where your body is in space), coupled with cognitive slowness due to the additional processing the brain is doing to adjust everything.
Hopefully your mood and motivation have improved. I'm also a clinical psychologist so I've been lucky enough to have some strategies to manage the stress and strain of this awful problem. The most helpful thing I have done is to challenge my perceptions of what I am capable of. At first my mind was telling me that I couldn't do a lot of things I used to enjoy, but that's really just a guess my brain was making. It's helpful to test things out and see what you're really capable of vs. what your mind says. Maybe you won't enjoy that party as much as you used to, but you might still enjoy it 70% of the time. Even 50% is better than sitting at home alone!
Any how I hope you're doing well. Looking forward to hearing more about how your vestibular work goes.
vote1forpedro PatientP
Posted
M78952 vote1forpedro
Posted
Hi,
First let me convey my concern for any of the patients who are still experiencing pain and/or are un/misdiagnosed. Since I last responded a few months ago, I clearly now have a diagnosis from a (closed) Brain Injury Dr at the leading most rehabilitation hospital in the country - Chicago's Shirley Ryan Ability Lab (formerly Rehabilitation Institute of Chicago). I sustained a brain injury from my fall two years ago (23 months ago to be exact). I am catching up on this string of responses and someone's request of my vestibular therapy. I'm currently in my 6 month and going into my 7th month. I probably will be in this therapy for 2-3 more months. It has cleared up my vertigo, disorientation, brain fog, balance. Since I still have a (minor) neck - when pain is experienced in my neck - my brain registers it as 'injury mode' and thus I when I'm in pain - my symptoms vertigo, disorientation, brain fog, balance can come back as the brain has a memory (to those responses). I know how to regulate these much better, by overriding the brains trigger and thus reduce the pain and symptoms. I was fortunate to be in Chicago and attending one the best Vestibular clinics - that's all they do and they do it well! I have also started vision therapy with a leading Traumatic Brain Injury (TBI) Dr who specialized in vision impairment after a TBI. Two visits to my optometrist missed this along with my neurologist. I am working on convergence and divergence vision therapy to get BOTH eyes coordinating. I am working with a Speech and Cognitive therapist. While I may sound and appear fluent and fooled many Drs., I kept saying - I'm word searching and can 'feel it' and know it. Again, the response is 'you're fine'. Well I'm not. After an intensive neurophych test, and brain fatigue is setting in - quick name as many things you can think of that start with the letter A. Well in one minute I named two!!!! One word was spelled out in front of me on the desk and the other word was Apple - well we just were just doing a matching activity and the items were fruit - ah ha the Apple. Happened again with the letter F - 5 words in one minute. So, my brain is so focused on my brain injury - keeping me upright, orientated in space, balanced, breathing, that it little extra bandwidth to do things like think of extra out of the blue words that start with the letter A - Gotcha and caught you 'off guard'. My brain processing is currently slower and with Cognitive and Speech therapy I will be better - much better. Many Drs. missed all these issues. If you have fallen, fainted, gotten a concussion - currently or past in a sport - the medical community is finally figuring out the damage to the brain - in real/live time. All the MRIs were clean, but my EEG (done by a neurophychologist who main patients are football players - amateur and professional). These patients were tired of the general neurologist staying you are fine - when they are not. I am working through 6 different therapies and plan to improve. Every session I do. The vestibular therapy was the gateway to helping me orientate myself in space and start normalizing the brain (macro level). The rest of these therapies will continue to refine the brain processes (minor level).
Best wishes and keep on asking the tough questions to get your answer and remedy.
brittany28663 PatientP
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Guest PatientP
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dylan26570 PatientP
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vinnknee PatientP
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I have similar symptoms to you and traditional medicine's been of no use at all. My lord and savior was a "massage" called cranio-sacral therapy. It involves laying on your back for half an hour, and the person massaging will just be barely touching certain points on your face and back. As soon as you stand up, you will be surprised as for how dizzy and dehydrated you are, but you will feel extreme changes. Should check it out.
vote1forpedro PatientP
Posted
Treatment has involved changing my neck posture and releasing my neck muscle tension with a very nuanced trial-and-error approach to seeing what works, based on how all my joints interact, along with an exercise program.
If anyone is in Sydney Australia, the physio is Fleur Balmain at Bay Active Physio in Double Bay.
If not, perhaps consider finding a physio with extra training in musculoskeletal function and a special interest in complex pain.