[LillyBelle77]

Hi! This is my first post. I must say that I've found some relief in reading through the posts - namely, that some of what I go through is 'normal'. So, thanks to all of the posters.

I fell in early 2015 - I was fine at the time of the fall (I don't remember hitting my head), sustaining a cut on the white of my eye and subdural hematoma beneath it. It wasn't until the next day that the symptoms began to show - dizziness, confusion, memory loss, inordinate amounts of sleep, fogginess, loss of balance, extreme nausea.

The doctor did x-rays, and didn't see anything, so I was diagnosed with cervical strain and sent back to work. I continued to get worse.

My first episode of pressure dizziness happened nearly three weeks into this (I hadn't been diagnosed with PCS at the time). I had gone to physical therapy, and he was really rough with me that day - had me lay on my back, which made me extremely dizzy - and then jerked my head to the left and right up and down, holding it in different positions. At the time, I think I had a pinched nerve, as my neck was in a lot of pain, but the PT said that I was just being dramatic, and continued with the head jerking.

Afterwards, I made my way to the car (yes, I still drove, dangerous, but I had no other way of getting to work, doctors, etc.), waited for the swimmy dizziness to calm, and pulled on the road. At the red light, the first hint of pressure dizziness came - it was a new sensation - I'd never felt anything like that before, and by the time the light turned green, I was concerned, so pulled off the road.

The pressure dizziness got horribly bad, and pain shot across my temples. When it was done, I was worried that I'd had a stroke because it was such an overwhelming moment, and also decided to seek out a chiropractor, hoping that it had something to do with the pinched nerve. (And my chiro was awesome! Fixed that pain first go, and it hasn't been back.)

The next pressure dizzy spell happened at work a week or so later (full duty at the time). I was feeling off that morning (the pressure dizziness came and went in small bursts - 3-4 seconds at a time), and when I got to work, I lost my balance and threw up my breakfast. I sat in a dark room for a bit, and then stayed very close to a coworker because I was still feeling really off. My boss came up to check on me, and said that I was sluggish, though I didn't think I was.

I don't remember too much after that except the pressure dizziness got super bad, one of the EMT's kept calling me 'babe', and that I wanted to sleep. A CAT scan was run, and it came back clean.

An MRA of my neck was run a couple of days later, it came out clean.
I was sent to a neurologist, and was diagnosed with post concussion syndrome.
The pressure dizziness would come and go - sometimes with a week in between spells (A month and a half is the longest that I've gone without one of these spells). After five months, and with little improvement, she put me back on full duty and said that five months was more than enough time to recover from a brain injury.
I was referred to a Brain Rehabilitation clinic, and was diagnosed with Acquired Oculomotor Deficiency - which is part of the reason why my balance is off and I have regular swimmy/woozy dizzy spells.

I've had two MRI's of my brain and one of my neck - all are clear. I've been tested for thyroid problems, RA, lupus, and other things - all negative, and did make changes to my diet to make sure I was getting what I needed.
But the pressure dizzy spells persist- and lately I've been getting them a lot. The last one was pretty bad, and I nearly cut off the tip of my finger with an immersion blender. I've fallen against active machinery at work, nearly fallen down stairs, and have been lucky, thus far, that when these come on, my coworkers or family have been able to stop me from hitting the floor. I've fallen during these spells on multiple occasions, though I don't really remember falling. I just know that someone caught me.

Over the past year, my condition has worsened. My balance is worse than at the beginning, and sounds... Oh, the sounds... Drunk mornings (I'm not drinking, but I wake up feeling drunk - I drink lots of water, so it isn't dehydration) have been worse - rather than feeling like I've drunk a beer or two, it feels like I've downed a bottle of tequila, and I stumble through the house with a pounding headache.
I was put off work because of a second fall last month- which has undone a great deal of my recovery. I didn't hit my head, but did twist my neck really hard, and have had many pressure dizzy spells since then.

I know the doctor is limited as to what she can do because of comp, and that my next appointment with her will see me on full duty again. I'm not after being off work, I'm after getting better. The pressure dizzy spells need to stop, and was wondering if this is a normal part of PCS after a mild brain injury (or, what's presumed to be mild, considering no one checked for three months).

In my research this week, I did read up about panic attacks, though it seems odd. While there's definitely a few occasions where I was nervous, I was calm before most of them - even happy before they occurred. My heart hasn't fluttered, though there was an adrenaline rush on a couple of occasions. But, I'm not discounting panic - maybe I just don't realize it. Or maybe it's just another symptom of PCS?

[Mark in Idaho]

LillyBelle77,

Welcome to NeuroTalk.

I'm confused. How do you know you suffered a subdural hematoma ?

What is pressure dizziness ? Many have dizziness. But, it is a broadly used term. There is vertigo, lightheadedness, etc. It sounds like you may mean vertigo. Has anybody tried the Epley Maneuver ?

Balance is connected to vision so vision issues can cause problems. Have you been assessed by a behavioral optometrist ? Was that what the Neuro Rehab clinic did ? Or, did they assess you with Physical Therapy or Occupational Therapy techniques ? Or was it a vestibular assessment ?

That PT sounds scary. I wonder if he made your condition worse.

Was this a work injury ? You say the doctor is limited by comp. Do you mean Worker's Comp ?

"she put me back on full duty and said that five months was more than enough time to recover from a brain injury. " The neuro sounds like a Work Comp hack. There is no way to put a timeline on a brain injury, even if it was only a concussion.

The imaging may have been clear but that does not rule out every concern. WC tries to use imaging to say there is nothing wrong so they can close the claim. The resolution of an MRI is only 1 to 2 mms. Subtle neck injuries are very common and do not image by normal means. Some get help from upper cervical chiros. The chiro you saw likely just resolved the more acute issue but not the chronic subtle issues.

Keep in mind that every discipline will only clear you by their skills. Some think they know more than the limits of their discipline. Many of us need to keep looking until they find the specialist who knows how to diagnose and understand your issues.

What state are you in ? Does your state allow you to choose your own care, especially after so many of their doctors not finding a solution ?

Please read the Vitamins sticky at the top. It has a lot of information besides brain based vitamin information.

[LillyBelle77]

Thank you for replying, Mark.

How do you know you suffered a subdural hematoma ?
My eye was bloody after the fall. An exam was given, and she said that I had a subdural hematoma. It wasn't until just recently that I realized that these could also be in the brain - but this one was in my eye.

What is pressure dizziness ?
I've had three types of dizziness over the year - there was an ambient dizziness - an all day dizziness - which has gone away. A swimmy/woozy dizziness - which has been called vertigo - that I 'think' comes from the eyes. And, the pressure dizziness. The pressure dizziness usually starts at the base of my skull on the right side, and then 'takes over' my brain. The right side of my head becomes very pressurized. During these spells, I get very confused, can't walk, and can't function. Sometimes, I can stand through the spell, sometimes I fall. Sometimes, I remember the entire spell, sometimes I don't. There have been times during these spells when people have come up to me, but I don't remember them being there. But perhaps this is the vertigo? No one's really explained much to me.

Has anybody tried the Epley Maneuver ? Multiple times. The Epley Maneuver, the BBQ roll, and another move. I get nystigmus when looking to the right and double vision to the left, which turns out to be the Oculomotor Dysfunction, but it made them think the crystals were loose. They did the Epley maneuver 3 times a week for the first four months.

Have you been assessed by a behavioral optometrist ? I was assessed by a neuro-optometrist.
Or was it a vestibular assessment ? I went through four months of vestibular therapy which was quite helpful. It got the muscles in my neck to relax - the eye pain and brain fog left, coordination improved, and colors got brighter. She taught me to massage the muscles, and gave me a host of exercises to do at home. I haven't had vestibular therapy after the second fall, but it will probably be recommended.

That PT sounds scary. I wonder if he made your condition worse.
I've wondered the same thing. There were several things he did that have made me question his skills.

Was this a work injury ? You say the doctor is limited by comp. Do you mean Worker's Comp ?
Yes, both falls happened at work. Winter hazards

"she put me back on full duty and said that five months was more than enough time to recover from a brain injury. " The neuro sounds like a Work Comp hack. There is no way to put a timeline on a brain injury, even if it was only a concussion.
That's one reason why I was glad to find the forum. I'm almost 40, and was very independent before this. Having to rely on my family for things has been hard. But, after reading the forum, I realize that I'm not abnormal.

The imaging may have been clear but that does not rule out every concern. WC tries to use imaging to say there is nothing wrong so they can close the claim. The resolution of an MRI is only 1 to 2 mms. Subtle neck injuries are very common and do not image by normal means. Some get help from upper cervical chiros. The chiro you saw likely just resolved the more acute issue but not the chronic subtle issues.
This is interesting. Before a pressure dizzy spell comes on, I usually get an ache in my neck, either off to the right or all the way across. What can I do to see if there is a subtle injury that keeps causing this?

What state are you in ? Does your state allow you to choose your own care, especially after so many of their doctors not finding a solution ?
I'm not allowed to find my own care. I paid for the chiro out of pocket because I was in pain, and my private insurance won't cover anything because according to them it's worker's comp - and I'm not rich, so...

And, thank you for the reply.

[Mark in Idaho]

The bruising in your eye would be called a hematoma. It may have gotten confused along the way and subdural was added. Subdural means beneath the dura, the outer layer of the brain, beneath the skull. Only a CT Scan or MRI would show a subdural hematoma.

Maybe they were referring to a hematoma where the optic nerve passed through the skull behind the eye socket. This could cause some of your struggles. They are rare but not uncommon in concussion injuries. When that optic nerve gets traumatized, it can take a long time to heal.

It sounds like you need a Work Comp attorney. You did not say what state you are in. I could research attorneys for you if I knew your local area.

Your neck should be a focus. It takes a combination of proper gentle therapy and discipline on your part to maintain good head and neck posture during rest and sleep. The subtle neck injury can take many months of discipline to see improvements. The only diagnostics would be your occasional pain and other symptoms like your neck muscle spasms. Massaging those spasms is treating the symptom, not the cause.

Imaging will not show it unless done by an upper cervical chiropractor or by other protocols that can target the fine irregularities. Some time ago, somebody posted about the imaging they had that showed a dislocation and ligament tear in the upper neck.

You lack of remembering your subsequent falls makes me wonder if you are having absence seizures.

Yes, anxiety can play a big part in PCS symptoms but your struggles do not sound like they are anxiety related. Anxiety can through the brain out of wack. It can mess up coordination and complex thought and other things.

Do you get headaches during these pressure dizzy spells. There is a thing called silent migraines. They are migraines without pain. They can cause dizziness. Acephalgic migraine (also called acephalalgic migraine, migraine aura without headache, amigrainous migraine, isolated visual migraine, and optical migraine). I would think a migraine specialist could direct you to some understanding.

I hope this helps. I really feel for your struggles, especially since they are due to hidden causes and people tend to think you are faking.

Regarding that PT. Please remember, you are in control of your treatment. If somebody tries to do something and you do not want them to continue, tell them to stop. If they do not stop, it is criminal assault. Your neck needs gentle treatment, not aggressive treatment.

My best to you.

[Mark in Idaho]

LillyBelle,

Have you had a caloric ear test ? It compares the right to left ear.

How about testing of your vertebral artery ?

I spent an hour talking with a doctor of audiology. Lots of things need to be checked out starting with the above tests.

A good hearing and balance clinic may be able to help in ways the vestibular therapist did not.

[LillyBelle77]

Thank you so much for your reply!
The hematoma could be why I have the Oculomotor Dysfunction then! The Neuro-eye doc wants to set me up with prism glasses to alleviate the double vision, and he talked about shearing - which could be why my eye bled.

I have a work comp attorney - comp is just resistant to approve treatment. I'll be going to court next month in order to force them to start treatment, but they're refusing further diagnostics because everything has come back clear.

Your neck should be a focus. It takes a combination of proper gentle therapy and discipline on your part to maintain good head and neck posture during rest and sleep. The subtle neck injury can take many months of discipline to see improvements. The only diagnostics would be your occasional pain and other symptoms like your neck muscle spasms. Massaging those spasms is treating the symptom, not the cause.

*This is encouraging - at the outset it doesn't seem to be because I've done so much work already, but the more I think about it, the more encouraging it is. And, I think you're right about the head posture when sleeping. Due to dizziness, I tend to sleep in odd positions, often with my shoulder on the pillow and my head dangling off. So, I do think this is extremely valid, and when they put me back on physical therapy, I will talk to my PT about it.

You lack of remembering your subsequent falls makes me wonder if you are having absence seizures.

*This week, after the MRI came out clean, I did read about seizures. I don't think I'm educated enough to really make that assumption? If that makes sense. While some of my symptoms may fit, they do also seem to fit migraines (as well as a bunch of other things... WebMD is a scary, scary place).

Do you get headaches during these pressure dizzy spells. There is a thing called silent migraines. They are migraines without pain. They can cause dizziness.

*I read about migraines, and was wondering about them. I don't get headaches very often, but did read about the silent migraines, and do intend to ask my doc about them. I read that a lot of silent migraines don't come with auras, but will make you exhausted - which I am after one of these spells.

I hope this helps. I really feel for your struggles, especially since they are due to hidden causes and people tend to think you are faking.

*Yeah, and I think that's the worst part of all of this. I feel like the doctors simply don't take me seriously - they want me out of their offices, but I just keep coming back, with the same symptoms over and over again One day, they'll figure it out though, that I have hope for.


And thank you again for the advice. I did read the vitamin page, and will get B vitamins tomorrow - I can't tell if I'm getting enough from my daily diet or not. So, thank you!

[LillyBelle77]

Have you had a caloric ear test ? It compares the right to left ear.

I did have caloric testing, and I came out symmetrical - which surprised the audiologist. He was sure there was going to be an issue, but there wasn't. I was highly symmetrical. But, he did say that I was hypersensitive on my left side - which also shows up in my reflex tests at the doc's. I'm thinking it was trauma though, as it reminded me of when I first fell, as that's the feeling I had laying down.

How about testing of your vertebral artery ?
No - that has not been tested? There was an MRA done, and it came out okay - is that testing the artery? My blood pressure sitting and standing are okay -they've tested both as I've stood and sat in succession.

[Bud]

Lil,

I got my prisms around 2 months ago. I did not like the distance ones at first, the near where immediately soothing to my eyes!

The doc knew what she was doing with the distance and has been correct in telling me to be patient and allow my eyes to learn to use them, they are finally becoming easy to have on.

Sorry you joined our club but glad you found us, this place sure saved me from thinking I was crazy.

Bud

[Mark in Idaho]

A careful audiologist will do vertebral artery testing prior to Hall-Pike testing. You lean forward, drop your head forward and turn your head to the right and count backwards. The head and neck position can cause restriction to blood flow that will cause mental confusion. I have problems with my head forward and tipped to the left. The audiologist I was talking with said it is not uncommon.

There is a doppler ultrasound that can look at blood flow. You would likely need to turn/tip your head to cause a differential. The MRA was in a straight head/neck position so it would not always show abnormalties.

I encourage you to try to sleep on your back with a straight head and neck position. I learned by sleeping in a recliner chair until I could learn to do it in bed. My sleep in this position was much better than in bed. An adjustable bed like hospitals use makes it easy to sleep in a better position.

My days after these good nights is much better.

I recently started trying to sleep on my side and my stressful dreams and lousy days came back.

If your job requires looking up and down, you would do well to reduce that as much as possible. It could be part of your falling problem.

If your attorney is not an expert in mild brain injury, he would be wise to check out http://tbilaw.com and http://subtlebraininjury.com. It takes an expert to represent someone whose imaging and other common diagnostics show nothing is wrong.

My best to you.