[BusyLiving]

19 year old with 6 months PCS, zero improvement, getting worse generally. Wide range of symptoms that I will eventually add into my signature (not allowed to make a signature yet?) I have been home-bound these past 6 months and my symptoms have made me practically bedridden. Seen 3 neurologists, no help. Will attempt to describe some significant struggles. MRI, EEG, and Sleep Study returned normal.

Insomnia: I sleep between 0-4 hours a night, added up, with nightly sleep paralysis. I take two doses of 10 mg Ambien (20 mg nightly dose) and low dose klonopin (0.125 mg range, trying to taper). One Ambien gets me between 0-2 hours of sleep. I have tried 15 mg Ambien and 0.5 klonopin once in a single dosing and did not initiate any sleep after laying in bed for 12 hours. It is insanely difficult to initiate sleep. Currently, taking two doses of Ambien has been more effective than a combined dose. When I do, I wake up around every 10 minutes. Once I hit “REM” stage, I get sleep paralysis. Every night. Sleep study could not diagnose anything. My sleep hygiene is very good, besides the fact that I can’t exercise or see any sunlight (which I guess could make it very bad). Have tried these: gabapentin, amitriptyline, Lunesta, Xanax, Ativan, and restoring at varying doses and combinations. Nothing can get me to sleep besides Ambien currently.

Anxiety: the unmanaged insomnia and sleep deprivation, along with I guess normal PCS recovery, has triggered intense daily anxiety. Have panic attacks once every few days. First “big one” was about a month ago, when I went to the ER in an ambulance because my family thought it was a seizure.

Car rides: I literally can’t handle more than 2 minutes in a car. This has made doctor visits practically impossible for me.

Visual problems: from my research, (currently undiagnosed-these conditions seem virtually impossible to get proper diagnosis anyway), I have visual snow syndrome and Charles Bonnet syndrome. Wide range of visual symptoms, main ones being 24/7 static throughout my vision, as well as non-psychiatric 24/7 hallucinations of cartoon like figures embedded in the static or flashing lights.

I can’t believe how difficult my life has become. I am 19 years old and would really appreciate input. Vitamin regimine is currently fish oil 2g RX and vitamin D 1000 IU. I am scared to take many of the vitamins in Mark’s regimine because I heard some people with anxiety/panic react badly to B vitamins, etc.

Thank you for your help. I will try to keep busy living in the meanwhile.

[Bud]

Busy,

I to had a difficult let time with sleep. I was able to sleep for to 1/2 hr segments, one usually around 10 pm and the other 5:30 am.

It was extremely scary and I thought I would never sleep again, I had never had trouble sleeping before so it was new ground to me. Eventually I began to win what I turned into a fear of laying down into a victory, it took time!

I spent a lot of time praying for people less fortunate and reading my Bible in the wee hours of the night as a way to not allow my injury to conquer me.

Don't allow it to conquer you, stay relaxed while laying down and eventually you will wake up and see the clock telling you that you slept for 2 hrs and then 4... It will correct.

Bud

[Mark in Idaho]

Busy living,

Welcome to NeuroTalk.

First, slow down with your online research. Charles Bonnet affects the blind or near blind. Too much looking for symptoms will increase your anxiety. Plus, you are tilting at windmills with some information like anxiety and Bs. Don't get paralyzed by outlier and anecdotal notes. You will always find an exception to normal responses.

Second, B vitamins are one of the best ways to help with anxiety, especially B-12. My doctor gave me B-12 shots to make sure I was getting good B-12. Some do not absorb B-12 through the gut very efficiently. Folic acid is needed for nerve fiber repair and blood brain barrier function.

You also need good amounts of anti-oxidants, C, E, to reduce oxidative stress in nerve cells.

You need magnesium (citrate or theonate) to sleep.

Have you had an extended blood panel done? B-12, folate, Magnesium, D-3, full hormone panel including thyroid, blood sugar, etc. can all be helpful. There is an excellent neuro-endocrinologist at USC Medical Center who has helped concussion patients with hormone needs.

Have you been offered a qEEG? They can be very helpful in the right hands. Neuros are not usually the best with qEEG analysis.

You can list you symptoms in your post without needing to post a signature. If you keep your follow up posts in the same thread, we can scroll through older posts to see your symptoms list.

Early in my recovery (15 years ago), I could not sleep well in bed. I did much better in a recliner with something mundane on the TV distracting me both visually and auditorily. My go to was a music video DVD of Celtic Woman. Using the same video over and over becomes boringly repetitive but that is good. The mind is occupied by the stimulus but drifts off due to the boredom aspect. Find something entertaining but not attention grabbing.

I use a comfy pillow and get cozy with a blanket. I learned to use this to be the best sleep. My wife would compare my sleep. In bed, I was restless. I tensed my muscles almost into spasms.

btw, During some stages of sleep, your muscles should be paralyzed.

I use headphones. It masks any ambient sounds. You likely are not able to ignore ambient sounds very well. I have a friend who still needs to use this technique and his injury was in 1997. He has his DVD player and TV in the bedroom. His wonderful wife has just learned to go to sleep with it.

My doc prescribed klonopin to help with jerks and spasms and such but it messed me up badly and left me sleepy all day. When I started taking caffeine to wake up, he switched me to 1200 mgs of gabapentin (I still take 300 mgs). It helped my body and mind let go. Everybody has a different response to gabapentin.

How could a sleep study be negative if you do not sleep for more than short bits?

You should not need to initiate sleep. Staying mildly active during the day and letting your sleep clock signal sleep with a feeling of sleepiness is best. There is a difference between feeling tired and feeling sleepy. Tired is a body feeling. Sleepy is a mind feeling where your eyes feel heavy and your mind wants to slow down. You need proper light cycles to help the sleep cycle work. You should not be getting in bed until you are ready to fall asleep. If you get in bed and do not fall asleep withing 15 minutes, get up and do something.

If bright sunlight bothers you, get sunglasses and a wide brimmed hat. Get outside and walk. Reflected sunlight is very good.

What happens when you ride in a car?

How did you suffer your concussion?

Has anybody mentioned your neck? Subtle neck injuries can cause a lot of problems. They do not cause pain but do cause other symptoms that do not appear related to the neck.

What have you had done regarding your eyes? A behavioral optometrist assessment would be worthwhile.

If we knew more about your symptoms other than sleep and snow, we could try to help more.

My best to you.

[BusyLiving]

Originally Posted by Bud

Busy,

I to had a difficult let time with sleep. I was able to sleep for to 1/2 hr segments, one usually around 10 pm and the other 5:30 am.

It was extremely scary and I thought I would never sleep again, I had never had trouble sleeping before so it was new ground to me. Eventually I began to win what I turned into a fear of laying down into a victory, it took time!

I spent a lot of time praying for people less fortunate and reading my Bible in the wee hours of the night as a way to not allow my injury to conquer me.

Don't allow it to conquer you, stay relaxed while laying down and eventually you will wake up and see the clock telling you that you slept for 2 hrs and then 4... It will correct.

Bud

Bud,

Thank you for the encouragement. Did you do anything actively to improve sleep, whether it be behavioral, medication, or supplements? Or do you mean you feel insomnia really resolved on its own? I definitely do feel scared. There were times that I have cried until I nearly passed out, from thinking about how the insomnia has made me so miserable.

BusyLiving

[BusyLiving]

Originally Posted by Mark in Idaho

Busy living,

Welcome to NeuroTalk.

First, slow down with your online research. Charles Bonnet affects the blind or near blind. Too much looking for symptoms will increase your anxiety. Plus, you are tilting at windmills with some information like anxiety and Bs. Don't get paralyzed by outlier and anecdotal notes. You will always find an exception to normal responses.

Second, B vitamins are one of the best ways to help with anxiety, especially B-12. My doctor gave me B-12 shots to make sure I was getting good B-12. Some do not absorb B-12 through the gut very efficiently. Folic acid is needed for nerve fiber repair and blood brain barrier function.

You also need good amounts of anti-oxidants, C, E, to reduce oxidative stress in nerve cells.

You need magnesium (citrate or theonate) to sleep.

Have you had an extended blood panel done? B-12, folate, Magnesium, D-3, full hormone panel including thyroid, blood sugar, etc. can all be helpful. There is an excellent neuro-endocrinologist at USC Medical Center who has helped concussion patients with hormone needs.

Have you been offered a qEEG? They can be very helpful in the right hands. Neuros are not usually the best with qEEG analysis.

You can list you symptoms in your post without needing to post a signature. If you keep your follow up posts in the same thread, we can scroll through older posts to see your symptoms list.

Early in my recovery (15 years ago), I could not sleep well in bed. I did much better in a recliner with something mundane on the TV distracting me both visually and auditorily. My go to was a music video DVD of Celtic Woman. Using the same video over and over becomes boringly repetitive but that is good. The mind is occupied by the stimulus but drifts off due to the boredom aspect. Find something entertaining but not attention grabbing.

I use a comfy pillow and get cozy with a blanket. I learned to use this to be the best sleep. My wife would compare my sleep. In bed, I was restless. I tensed my muscles almost into spasms.

btw, During some stages of sleep, your muscles should be paralyzed.

I use headphones. It masks any ambient sounds. You likely are not able to ignore ambient sounds very well. I have a friend who still needs to use this technique and his injury was in 1997. He has his DVD player and TV in the bedroom. His wonderful wife has just learned to go to sleep with it.

My doc prescribed klonopin to help with jerks and spasms and such but it messed me up badly and left me sleepy all day. When I started taking caffeine to wake up, he switched me to 1200 mgs of gabapentin (I still take 300 mgs). It helped my body and mind let go. Everybody has a different response to gabapentin.

How could a sleep study be negative if you do not sleep for more than short bits?

You should not need to initiate sleep. Staying mildly active during the day and letting your sleep clock signal sleep with a feeling of sleepiness is best. There is a difference between feeling tired and feeling sleepy. Tired is a body feeling. Sleepy is a mind feeling where your eyes feel heavy and your mind wants to slow down. You need proper light cycles to help the sleep cycle work. You should not be getting in bed until you are ready to fall asleep. If you get in bed and do not fall asleep withing 15 minutes, get up and do something.

If bright sunlight bothers you, get sunglasses and a wide brimmed hat. Get outside and walk. Reflected sunlight is very good.

What happens when you ride in a car?

How did you suffer your concussion?

Has anybody mentioned your neck? Subtle neck injuries can cause a lot of problems. They do not cause pain but do cause other symptoms that do not appear related to the neck.

What have you had done regarding your eyes? A behavioral optometrist assessment would be worthwhile.

If we knew more about your symptoms other than sleep and snow, we could try to help more.

My best to you.

Mark,

Thanks, excited to hear from you. Have been lurking on the forum for several weeks, mainly reading some of your posts, before finally making my account.

I mean, I am content with just calling it “visual hallucinations”. I have no idea what it is, and I have not been able to find anyone with TBI/PCS online that experiences what I see 24/7. If you, or someone else, can offer input on this symptom, it would help 25% of my anxiety. The closest I’ve gotten was Charles Bonnet. I see moving cartoons (people, cars, boats, random, no coherence) 24/7, both eyes open and closed. I feel mentally sane and have had this since the day I hit my head. I can 100% tell that they are not real. It gets frustrating as they are often in my way, and I have no relief even when I close my eyes.

Will try the vitamins then. Everything is already bought for months. Just scared to add new things. Haven’t had any blood work done. Car rides have made it nearly impossible to leave the house lately. Im in the LA area, but USC would still be many hours with traffic one-way. Will definitely look into it.
I’m
Think mine was an EEG, not sure where to get qEEG, will look into this as well. I’ve seen three neurologists (one is a sleep specialist) at the same clinic, they didn’t talk to me about it.

I am certain what I experience is sleep paralysis on a nightly basis. With hypnagogic hallucinations to be specific. (These are incredibly distinct from my 24/7 cartoon hallucinations). Sleep study said mild sleep apnea at the level of quiet snoring. Poor sleep onset and poor sleep maintenance (basically recorded my insomnia and constant awakenings). But no sleep disorder that can be treated directly was diagnosed. Just like with the visual hallucinations, I can’t find anyone on the internet that has this level/frequency of sleep paralysis after PCS. This makes me very fearful.

In terms of sleep hygiene, if I only go to bed when I am extremely extremely sleepy, I would for sure be sleeping at a dramatically different time every night. I often have unpredictable bouts of sleepiness then bouts of energy, regardless of how much sleep I get the nights before.

I am so light sensitive I currently wear sunglasses indoors. I have a very nauseating time walking, even slowly. I think this is very much from my vision issues. Everything is already zooming in and out like crazy when I am still, it’s so much worse when I walk. My sister has suggested I see more sunlight many times.... I am trying very hard, but I’m so so light sensitive even with sunglasses.

Extreme motion sickness during and after car rides. And worsened symptoms across the board lasting several weeks. Have only been in the car 4 times in the past 6 months, one time was the ambulance that was called for me... eyes open, eyes closed, holding onto something, I really can’t stand even a minute in a car. My entire family has decided car rides are only for emergencies for me at this point. They have seen how my symptoms have permanently worsened after every car trip.

Haven’t look into my neck. Chiropractor? Hope he doesn’t do the neck popping stuff and possibly make me worse! Will look into it.

Have done nothing about my vision yet due to the car ride issue. There is a vision therapist within driving distance that I plan to visit soon.

Will post a symptom list in my next post.

Excited to get your input Mark, even mentioned your contributions on NT to my mom several times.

BusyLiving

[Mark in Idaho]

It sure sounds like you need to be assessed by a multi-disciplinary team at a neuro rehab hospital, maybe even as an inpatient.

Tell me what part of LA you are in and I can do some research to find resources.

Regarding sleep, you set your sleep cycle by the time you get up. Get up when the sun rises. Stay awake (no naps) and see when your sleepiness hits. Get up the same time EVERY day so your sleep clock does not get mixed up.

I get up at 7:30 to 8 am and start shutting down at 10 pm and go to bed at 1 am after settling down and zoning out on mundane TV or Netflix, etc. I wake up naturally with 6 or 7 hours of sleep. Many need 7 to 9 hours.

If you get up at a reasonable time like 7 or 8 am, and don't use caffeine during the day, then don't feel sleepy until very late but you wake up naturally again at 8 am or so, that is fine. The goal is to get 6 to 8 hours of continuous sleep. You may need a snack of protein or complex carbs before bed to keep your blood sugar balanced.

Your hallucinations can be caused by your lack of quality sleep.

I suggest you get the vitamin regimen going, including the magnesium and work on getting up early every day.

My best to you.

[BusyLiving]

Thanks Mark. Trying to figure out how to private message you, will message my location. My mom looked into some neuro rehab in LA on my behalf, but ones like UCLA won’t take me, because I’m PCS and not TBI... insurance won’t pay either.

Hit back of my head on laundry machine February 2017. Only symptoms were minor dizziness and nausea. Felt completely symptom free after 2 weeks, and even started doing better in college and exercising more. Within 4 months, hit the front of my head on a metal bar at the gym June 2017. Within one week, and over the course of 2-6 weeks, developed varying symptoms and diagnosed PCS. Symptoms have gotten increasingly worse every month, in particular after car rides/my few doctor visits.

It should be noted that as a general timeline of events, many symptoms including all my visual ones like hallucinations started within one week of my accident. Sleep issues such as insomnia and sleep paralysis started around the second to third week. I was sleeping 8 hours a night up until I suddenly couldn’t sleep for several days in a row. Then got on Ambien, and realized I literally stopped initiating sleep unless I took it.

Physical: various headaches (most commonly throbbing at back of my head, becomes more painful if the back of my head is laying against anything such as a pillow), extreme light sensitivity, extreme noise sensitivity, ringing in the ears that at times gets so loud it’s difficult to think in my head, palpitations, hard time balancing, dizziness (laying and sitting, gets worse as I walk), nausea, widespread throbbing pain throughout my body (stomach, back, legs, arms, finger tips), “shaking” or “vibrating” sensations throughout my body

Visual: 24/7 cartoon like visual hallucinations eyes open and closed, 24/7 visual snow eyes open and closed, 24/7 strobe-like flashing lights eyes open and closed, eye pain wrapped around my eye (particularly right eye), right eye feels “used more”, intermittent blurriness, visual distortions such as flat lines seeming wavy, hard time focusing on objects, impossible to make eye contact (including with myself when I look in mirrors)

Cognitive: concentration issues, memory issues, brain fog, “uncontrollable” nostalgia (these are not PTSD like flashbacks, I just keep remembering memories from throughout my life, feel like I have no control)

Psychiatric: panic attacks (small ones a few times a day, big ones every few days), anxiety, derealization, depersonalization, “uncontrollable” conversations to myself In my head (this only happens if I feel like I’m not being distracted, such as when I close my eyes while laying down. I will either say meaningless phrases or have full-blown A-B conversations with myself that I often don’t realize is happening. When I catch myself doing it, I feel a little panicky), constant counting numbers in my head, “minor depression” such as crying fits and lack of interest (I say minor because this only happens when I haven’t been sleeping well for a few days in a row, etc. perhaps a normal reaction.)

Sleep: insomnia, extreme fragmentation/awakenings, hypnagogic sleep paralysis

[Mark in Idaho]

It sounds to me like your first effort should be to take care of your neck, especially your upper neck. Trauma to C-1 to occiput can cause inflammation that disrupts blood flow and causes every kind symptom you are having. An upper cervical chiropractor may help Directory - NUCCA - National Upper Cervical Chiropractic Association
A PT who has expert experience with upper neck therapies could also help. Treatment should be very gentle to facilitate healing without causing inflammation. You should be icing in a good head and neck posture.

Either a chiro or PT or maybe osteopath can help but you need to find the right one. Most are just book learners. Others have developed skills far beyond traditional training and are far better. It takes a lot of time and effort to find the 1 in 8 or so who is really good.

Some of your sleep issues sound like mine early on when I had problems with inflammation in the upper neck and brain stem. Any odd posture caused problems.

You need proper blood flow to the brain to get quality sleep. Inflammation is your enemy. Anything you can do to reduce it will be good. Anti-inflammatory diets have helped many.

You can PM from the drop down under my screen name.

[Bud]

Busy,

I would start preparing to settle down 2 hours ahead of bedtime.

My routine consisted of being very judicious of what I watched on tv..nothing scary or saddening which I was easily susceptible to being scared or tears back then.

Earplugs to reduce noise and unnecessary sounds.

A cup of Chamomile tea. Not a tea fan but that was soothing.

I think it is important to avoid getting anxious over being awake when everyone else in the house is snoozing like normal. Being able to lay peacefully has a good deal of rest involved with it as well.

Sleep eventually returned at its own pace, but when I was in the middle of it I believed that I would never sleep again. Happy to be wrong!

Bud