New member with post concussion
 

Hello! I am new here. My dad died in mid January; he had Parkinson's and I had been taking care of him. It was a devastating loss. I was starting to feel a little better and less like I was in free fall when I was in a car accident. A woman came from the shoulder of the road and tried to pass me on the inside of a right-hand turn, and since she was accelerating, she really slammed my car around. I never saw her until mid-collision.

I have really been through it since then. Since I work in the schools I had been waiting until summer to really start on doing the job of combining my dad's stuff and mine into one condo, cleaning mine up and moving back into my own condo. It would have been a daunting job under the best of circumstances, but with a headache it was brutal. I had to pay people to do a lot of things I should have been able to do myself, to some extent even to think about how to pull it all off.

Now I am back to work, but part time and at a different school. I have had OT and Speech tx, and a lot of chiropractic. My doctor has been only minimally involved, but I'm starting to think that's not good. It seems I'm supposed to figure all this out myself and I'm not doing very well at it. In a lot of ways I am better, but have had a headache, light and noise sensitivity, and a pressured feeling in my head almost every day for three months. My balance and speech problems are better and the OT and SLP discharged me last week. How does anybody figure all this out and what to do?

Pressure in head
 

I wonder if anyone can tell me if pressure in my head is something particular to do with TBI/PCS? When I was much younger I used to have headaches and sometimes migraines, but none for 7 years - until this car accident with intense twisting whiplash. Many of my symptoms have cleared up but I am left with a headache - every day for three months. It is triggered by light, noise, stress, and who knows what else. The headache seems very connected to the place in my neck that the chiropractor is treating, but this headache seems different than the ones I used to have in that I have this feeling of pressure from inside my head.

I had X-Rays in the ER right after the accident, but it was on a reservation (kinda like a third world country). Immediately after the accident I had the feeling that my eyes weren't working together and there was a split from high left to low right that didn't match up. All they could do at that ER was to have me stand 20 feet back from an eye chart and read it.

My doctor was getting ready to go on vacation and when I called him to tell him about this, he told me I was fine and I should just go home. I saw the nurse practitioner who was covering for him while he was gone and she had me do MRI's of my head and neck. Nothing on the scans.

My doctor is taking it more seriously since he came back, but is of the opinion that the concussion will just go away by itself. I was seeing a speech path and an OT; they have now both discharged me. The OT was trying to get me to see a neurologist or a neuropsychologist and my doctor thought I didn't really need to do either, but wrote the referrals. Even though he wrote the referrals, I can't get an appointment because they are so booked they are seeing people four months or so from now. And it's not like I have already been on a list for the three months since the accident because no one can figure out who I should see...

I am working with an attorney because it was so squirrelly from the get go. The tribal police told me that I had no right to know who hit me, who her insurance company was, or to have a copy of the police report. I eventually did get all that, of course. The other driver was cited and I wasn't.

But now I am getting a little worried because I am still having problems. I feel like I am turning into a hermit because my headache returns or gets worse when I go outside into the light, and I am too tired to go out at night. I used to work full time and play the cello in three different groups and now I hardly go to rehearsals because of the noise. I really need a full time income, but hardly have what it takes to pound the pavement and find more work.

My attorney seemed very good, but was called off on a special assignment for six weeks and the guy who was covering for him has only talked to me twice. I really don't know what I am supposed to do. Is it reasonable to just figure I'll have a headache forever and accept that I may never be able to work full time again and therefore be forced to sell my house at a huge loss and have no idea how I will ever survive because of headaches?

Sorry for the long post. I am starting to feel desperate...

Hi and welcome to NeuroTalk
I have merged your 2 threads to make it easier for you and other members to respond.

Adenium,

It sounds like your head and neck have experienced quite a trauma. The twist and jarring can create a complex injury. The upper neck can often contribute to many symptoms, especially head aches. Most chiros use the 'twist the head and pop the neck' treatment. This can be far too aggressive for the types of neck injuries that cause these symptoms. An upper cervical chiro may be worthwhile.

A physical therapist who has good upper neck skills can often help with gentle traction with some gentle manual mobilization of the upper neck. Range of motion exercise can be premature.

Clear x-rays, CT Scans and MRI's of the neck do not mean you do not have a subtle upper neck injury.

It is important to use good posture discipline while the neck heals. Good sleeping and resting posture is very important.

There is some good information about these injuries and attorneys at Brain Injuries Help: Crashing of the Mind After Traumatic Brain Injury and Subtle Brain Injury Permanency from Concussion

A physiatrist (Physical Medicine and Rehabilitation MD) may be better than seeing a neurologist. It is worth scheduling the neuro psych because if you are still struggling in 4 months, a neuro psych assessment will be very useful.

Please don't lose heart. Many have gone through similar injuries and slow recoveries. It often takes time and finding the right therapy combinations to see improvements.

My best to you.

Fatigue and headaches 3 months out
 

I had a very difficult summer, working almost every day-sometimes long days-on my dad's estate, consolidating his and my stuff together into my condo. I am far from done going through all of his stuff, but at least I did manage to get moved into my own condo, fixed up a few things, and got rid tons of stuff. Most of the work I was doing is gone; the guy I was working for lost the contract. I do have a short term contract of my own and am trying to focus on doing a good job of that.

In a way I am kind of relieved; I don't think I am really in any shape to work full time or to drive 2-1/2 hours (each way) to work on a reservation, even two days a week, like I did for four years before the accident. I used to have so much energy it made people tired just to hear what I did in a given period of time. Now I have headaches, light and noise sensitivity, and I get very tired, even after a short day. I sometimes feel like I could just go to bed at 5:30 or 6:00 in the evening because I am so tired, but I am not actually sleeping all that well. It's hard to imagine how I could be working full time at this point. But I need to work.

From what I've read recently, I wonder if I was really doing too much this summer. Maybe I should have been resting and not trying desperately to get this move accomplished this summer, in ten weeks. But now it is back to school time, I should be working full time, but I am working part time and don't think I could be doing any more. It's hard to even think about what I would have to do to get more work.

I had dinner with a friend and her family; they are in town for the week. I was talking to my friend's partner about how I think I have too much fatigue and headache to work full time. My friend's dad jumped in and more or less told me that I was malingering because it had been three months and I must not want to work because I was making too many excuses. He pointed out that my dad always worked hard and I should follow his example. I pointed out that my dad was to tired to do much of anything after he had Parkinson's, and my friend's dad told me that was different because he was retired before he was so tired. He was basically telling me that there was no good reason to be tired three months after a concussion - like I must have suddenly developed severe laziness.

That friend's dad was completely wrong. Many struggle with PCS for months, some even a year or 2. It just depends on their specific injury and what they can and can't do during their recovery.

It is important for you to get good sleep on a normal schedule. Getting up at the same time each day helps the body's sleep clock so you can get to sleep. Do not sleep in/late even if you feel tired. Get up. Then, at night, slow or reduce your activity level so you recognize when you feel sleepy. Have your bedroom and any tasks done so when you feel sleepy, you can just get in bed and sleep. Stopping to do hygiene, turn off lights throughout your condo, get sleep clothes on, etc. can disrupt the sleepiness. For some, we need to have everything ready a half hour to an hour before we go to bed.

Just remember, the most important part of getting to sleep and sleeping well is getting up at the same time each morning. Sleeping in, even if it is just on weekends, disrupts this sleepiness cycle.

Proper sleep means one gets all of the stages of sleep. REM sleep and slow wave sleep are imperative to recovery.

I slept lousy last night and know it will make my day lousy. My wife was up too late watching the Olympics and it interrupted my routine.

Thanks, Mark! I had an especially bad day today with no particular idea why other than yesterday having been a horrible day. Some unrelenting headache, but more problematic was this brain-fog where I couldn't get anything done because I couldn't focus or keep track of what I was doing. I may not have slept enough...

Getting up is no problem. I set an alarm and when it goes off the cat comes in and starts poking at me, licking me, sticking her whiskers in my face etc., until I wake up enough to give her a few cat treats and we both get up. I taught her to do this so I don't oversleep. I am a school psychologist and studied animal learning in school. It's been fun applying it to Lena.

Getting to sleep can be problematic. Sometimes I am overcome with grief and worry that my dad is gone and what will become of me alone. He died in January after a long struggle with Parkinson's and ten years of my taking care of him. I have supported myself all along aside from a brief period when he helped me. I also am an LCSW...I have good marketable skills for which there is a demand and a stellar resume, but it's hard to not worry.

No one who knows me thinks I am capable of working full time right now, and that worries me. I have always had enough stamina and energy to make people tired just hearing about what I did in a given day. Also, no one seems to have any doubt that I'll get better because I do keep getting better. But it's hard to not worry and fret about it.

Even those who end up with permanent PCS like me still end up with the ability to have full lives with jobs and such. Letting the future control you today will prevent or delay your recovery. Good sleep is the most important part of recovery. You need to find productive thoughts or a way to zone out as your prepare for sleep so your thoughts do not torment you at night.

I have a routine where I get sleepy watching TV or NetFlix. Nothing stimulating. Just enough to take my thoughts away from day to day issues. I have everything ready to get in bed, lights off, hygiene done, so when I feel sleepy, I get in bed and fall sleep within a few minutes. I used to lay in bed for a long time trying to go to sleep. Now, with this system, I am asleep very quickly.

For some, making a few notes about things to do tomorrow is helpful. Writing things down helps the brain let go with the security those things will not be forgotten.

It might help for you to get some counseling for both your grief and PCS.

It can be an easier road to travel when one has a system for getting through the day. Foggy brain can follow a system but may struggle to get a system started.

My best to you.

Thanks so much for your thoughts and comments, Mark! Tomorrow I see my PCP and am planning to ask him for a referral for medical massage. Many of my symptoms from the head injury seem to be resolved. Most of what is currently bothering me is the fatigue and headaches, many of which are triggered by light, noise, and/or stress.

Even though I do not currently have the energy and stamina to work full-time, I feel guilty about this and worried about the long-term ramifications of having to take some money from my savings for a period of time - however brief - to live on. I was far from taking it easy last summer and that may have lengthened my recovery. Similarly, I think the amount of worry I have now is impacting my sleep, which as you mention is not a good thing. I need to work on that.

Anyway, I wonder if you have any suggestions about things to bring up or ask of my doctor when I see him tomorrow. I have only seen him twice since the accident. He is a great guy and really smart, but like most GP's, working with soft tissue and the brain is not his forte. Nevertheless, he has historically been willing to go along with reasonable requests from me when I have something I want to try. Any ideas?

I am 29 months since my TBI and other spinal nerve injury. I only progressed so far, but certain issues remained. 21 months post injury, two neurologists telling me nothing else they knew of wrong. many months of neck exercises, etc. then 3rd neurologist with under 30 seconds of hands on clinical diagnosing proved out a greater occipital spinal nerve injury (c2) and told me blatantly...they never should have had me exercising and stretching my neck....and now even more damage is done. the occipital nerve also impacts your optic nerve. I would limit your neck movements until you find a neurologist that understands occipital nerve injuries ( i am assuming the: greater occipital nerve) and have this proven out before you possibly unknowingly build up nerve scar tissue that only further complicates things. And I would not allow any nerve surgery before this is considered...newer info that I came across. I was considered for removal of that spinal nerve....but came across this info just yesterday...after 29 plus months since injuries...

Dr. Jho's C-2 Decompression for Occipital Neuralgia surgery: Novel Surgical Treatment for Occipital Neuralgia or Headaches

It would be worthwhile to get some blood work. Thyroid, B-12, D-3, Folate, and the rest of a full panel. Some get the rest of the hormones checked but that would require somebody who understands hormones to read the results.

I'm not sure a medical massage would be good unless it was directed by a Physical Therapist who is knowledgeable and skilled at working with upper neck issues. Upper neck injuries should be treated with gentle therapy. No range of motion and harsh stuff. Just gentle traction and mobilization. A massage therapist may get too aggressive.

How often do you have the headaches and do they respond to pain meds like ibuprofen or acetaminophen (Tylenol) ?

Thanks, Mark! That's good information about the massage. My chiropractor has been very good and I've improved quite a bit under his care. I think he's been on target about what he's been doing with me. I'll make sure he is specific about what he is recommending in the way of massage. He has done quite a bit of this - working with massage.

I'm not sure I understand what you are talking about as to the blood work and how that relates to the head injury...

That is terrible-I'm so sorry you have had to go through all that, Pedalspinner. What is it that happened to you 29 months age?

If your thyroid is not working properly, that can cause fatigue. If your folate and B-12 are low, that delays recovery. The injured brain requires more nutrition than a healthy brain.

What are all the treatments/therapies your chiro is doing ?

I am a true believer in chiro but know many chiros think they have all the answers. Of the 18 chiros I've seen over 35 years, they all claimed they could help me but only 5 or 6 truly did. Many are too aggressive.

I had a chiropractor that I loved and he was always very helpful. He was a really great guy and an asset to the community, volunteering his services to help the high school teams (his kids were all on teams and he was there anyway). He died suddenly (apparently he had a seizure disorder) and I just hoped I never needed another chiro, because I thought no one could follow Don. But after the accident I thought I'd try the guy who took over Don's practice and I really like him. He does straightforward mainstream chiropractic, sometimes with some other therapies thrown in there, and it seems to be working. His office is also less than a mile from my house, which makes it pretty easy to get there.

I've been working hard at sleeping more and that seems like a good thing. I was telling someone I was trying to get seven hours and she said, "you have a head injury-you should be trying for eight. There is just no reason not to!" Seems to be a good idea...

There is no reason to try to sleep more than 7 hours if you go to sleep easily and wake up easily. If you wake up groggy or foggy, your quality of sleep may be questionable.

If your chiro is doing the classic 'twist the head and pop the neck' adjustment, it may be too aggressive. At least, ice your neck after each treatment.

My favorite chiro retired. He was a true healer and directed me to a physiatrist for issues he could not treat. The physiatrist referred me to a very uniquely skilled physical therapist who is fabulous. I found one good chiro since but he moved away. My favorite physical therapist no longer takes my insurance so I am stuck without the care I need.

Oh that's a good idea - icing after adjustments. I usually do it when my head hurts, which may be too late.

Stress seems to be the biggest and fastest trigger right now. This afternoon I was talking to my friend Greg about my dad's condo, which I am really not ready to figure out what to do with yet. I finally moved back into my own condo, but his still has tons of stuff in it that I need to figure out what to do with. So, Greg has an uncle who is a realtor and lives two hours away, and he was talking to his uncle about this condo and his uncle wants to come and look at it - like this week. I am nowhere near ready to show it to anybody or have any pressure about it.

I have just begun a new job and I am trying very hard to get the work done, not make mistakes, get it done right and on time. I really can't afford to mess this up and lose it. Since I lost my primary job I really need to get this one right because I really need the money. The condo is low priority right now. I told Greg I couldn't deal with it and my head was starting to hurt. He kept on and in a few minutes my head felt like it was going to explode. A few minutes later it started to throb and I insisted that Greg stop talking about this.

Greg has been a life-save this summer as I've worked on combining my dad's and my stuff into one condo, painting my own condo and getting things together and moved back in, even though there is still tons to do. Greg was really helpful in the beginning after the accident, reminding me to not bend over, not lift anything heavy, not climb ladders, and so on - that the physical stuff was not good for my head and should be avoided. But somehow he doesn't get this one - that when he pressures me about something I get a horrific headache and it's not good for me. I'm not sure why the stress of being pressured like that brings on killer headaches, and so I am having trouble explaining this to him. Any ideas to understand this better so that I can explain it?

If you can get Greg to read somethings about Concussions, it may help. At the bottom of the first post in the Vitamins sticky at the top are three links. The TBI Survival Guide is great but long. The YouTube video takes about an hour. The Brainline link is the shortest read and may be enough to get him on the right page.

Yes, stress, especially from somebody incessantly talking and pressuring you will trigger a bad headache and mental confusion and for some of us, an outburst of anger or yelling.

You need to have a strong phrase or something that tells Greg, "I am struggling and this needs to stop." so you can say it, even if you are in public.

From my experience, I would not let a realtor from 2 hours away list a property. I'd want somebody with experience with the same condo project who really knows the market.

But, you need time to deal with your father's stuff. That is too much stress to do under pressure. Stay focused on your new job and go slow with your father's place. I know how tough it is to clear out parents' home. My siblings and I have had to do it last year. Lots of stress as memories get replayed. Give yourself time to finish saying good bye.

My best to you as you continue to move forward.

Thanks Mark! I really appreciate your sympathy, support and information. I wasn't able to find the links you wrote about, although I did see some interesting things as I was looking about for them. I also tried looking for the words, like "Brainline" but got tons of hits, none of which seemed to be the one you were referring to.

Laura

Here is the important part of the Vitamins post I mentioned.

There are three valuable resources for you to check out.

The TBI Survival Guide at Traumatic Brain Injury.
Print it out (84 pages)

The YouTube "You Look Great" 6 part series
[1 of 6] "You Look Great!" : Inside a TBI - YouTube

The brain line 'TBI Lost and Found'
Lost & Found: What Brain Injury Survivors Want You to Know

Share these with your family and/or friends. And, try to find a TBI support group to attend with your family. They can be a great source of support and understanding.

Home made Ice pack

My recipe for a flexible/crushable ice pack is simple. One part rubbing alcohol with three parts water in a zip lock baggies. Freeze them, three is good, so you can alternate them and always have a frozen one. Ice frequently for 15 minutes on and 30 minutes off and repeat. If you get any stiffness of head ache, get the ice pack out. The upper neck easily gets inflamed cause symptoms. This should make a difference.

Here is a link to the whole post. http://www.neurotalk.org/1106982-post101.html

PedalSpinner..

How did you get the diagnoses of a nerve injury? Were there special tests or scans done?

Thank you.

Thanks, Mark!
I forwarded that on to Greg, have talked to him some about it, and am looking through it my self. I really appreciate your rounding it up for me.

I had a hard day today. I am back at work, but part time, and am struggling. I want so badly to believe that I am okey dokey and everything is fine. Sometimes I feel (almost) ok, and then things get worse. Today I had to go test a student at a middle school but he wasn't on the main campus. He was in this building that they call "a school within a school", but where was it. "Oh, over near that restaurant - in between that and the post office". I went home last night hoping I could find it on the school map. Nope. So I went in this morning, hoping they could get him over to my office. Nope. I had to find this building and test him over there. "You just go past the stop sign and turn left." Which stop sign? Huh? Finally, the secretary took me outside, we talked down the length of the building, and she showed me where you could see it if you looked carefully between two other buildings.

So I went over there and tested this kid, the first of two tests. That mostly went ok. I usually do the tests back to back and it takes 3 to 3-1/2 hours. Today we just did one of the two tests and it took two hours. When I was through my head hurt all the way from the top of my head, down my neck and back to the shoulder blade and then out to that same side. Now it is 9 hours after that was all done and I have tingling all throughout my neck and a bad headache.

I've been trying to figure out how to do this paperwork and couldn't figure out why or how I didn't know how to do it. Then I remembered that in the setting where I was working, I actually wasn't doing this paperwork for the last 6-1/2 years - the Special Education teacher was doing it. How would I ever remember it? I can't figure out what I should be on top of and what would not be expected of me in any condition I was in. I really really want to look like nothing is wrong with me, but it seems like the more desperately I want that, the more I realize it's just not true. Then I think I am maybe just faking it, even to myself, and then I remember that I have had a headache every day for over three months, after not having a headache for 6-1/2 years.

I am trying to wish myself to an immediate resolution of my PCS and I'm thinking this is not exactly working...

One of the toughest parts of PCS is learning the new ways to do things that we need to do. The old ways we did things, often without even a second thought, are gone, at least for the time being. Making lists and charts for ourselves can be a big help. We can get the work done if we slow down from our previous speed and intensity and use notes, check lists and charts.

It may sound like going back to school because the issues are so elementary and it is. We need to reteach our brains how to do the tasks. We need to stop trying to remember everything and juggle things in our head. That will overload us every time.

It is also important to get control over our environment. No or minimal background sounds and sights. Distractions that used to be tolerated can become headaches and mental crashes/freezes.

Remember that icing your head and neck can help with the tension and headaches. Ibuprofen, acetaminophen or aspirin can be a big help. I buy aspirin and ibuprofen in the Costco quantities.

Hope you have a better day tomorrow.

Thanks, Mark! I have a complicated day tomorrow, and your post made me figure out what I should do... I bought a planner and wrote in it what I am dong tomorrow. So I just looked at it and got the two bags of stuff I need - pool bag and professional kit. They are all packed up already and the bag is in the car and the kit is in front of the door. Better than worrying that I'll forget - use my datebook, get everything ready and put a note on the fridge to pack a snack.

I don't know why it's so hard to remember to use a planner/date book. Well, I guess it's that I had gotten used to using the calendar on my phone, but now I tend to make a lot of mistakes such as entering things on the wrong day...

Adenium,

I missed 10 months of work in 2014.

Last summer 2015 was a year plus after my accident. I was a total rookie at work. I have been doing my self employed job for years and I simply could not make decisions, any changes to schedule which happens everyday in my work where absolutely frightening to me. I had to ask my son and son in law many times if I was doing something correct. My daughter had to drive me around in the afternoons because by then my head hurt badly and any thinking was foggy beyond the one immediate task in front of me.


This summer, 2016, two years post, while still dealing with limits in some areas of life I was much more the capable veteran at work. I felt and mostly thought clear again and was able to deal with the daily changes and disruptions to schedules in a smooth manner. I rarely needed my daughter to drive for me.

As Mark said you will find ways to work around what ails you...be patient, clever and forbid yourself thinking you are failing because you aren't currently the same. You will be surprised at how resilient you can become.

Bud

Thanks Bud! It is hard accepting that there are things that I cannot do, cannot process, cannot remember, cannot keep straight. I am working now at a new job and it is part time and I am struggling with getting it right. I feel like I should be able to handle this situation that is chock-full of details, many of which are new and many of which I have not dealt with for ever six years.

In addition to the brain injury, I am also grieving the loss of my father - I am seven months out from that devastating loss. We were very close and I cared for him as he went downhill form Parkinson's Disease. In the beginning I was totally floundering and could not really cope with anything. Four months out from that, I was beginning to get my feet under myself again, and then this woman tried to pass me on the inside of a right hand turn, accelerating as she slammed into and spun my vehicle.

I don't want to admit that I am vulnerable and have limitations. It is against the coping mechanism I learned to get through life with, but this "coping mechanism" is counterproductive to my recovery. The more I fret and try to pretend all is well and I am limitless, the worse I feel. Acknowledging this actually makes me feel better. I am trying very hard not to panic about my future...

I keep thinking maybe I'm right on the verge of being all better, and then I realize that is not true. I went to my first day of Ceramics class at community college today. I had a few struggles in class, and during a break I asked a woman in the class who has known me for a few years, but is not really a friend-like outside of class, if she noticed anything about me that seemed different since the accident. She hadn't seen me since before the accident. She was a little reticent, but I told her I really wanted to know what it seemed like from the outside. After my coaxing she said that I was having more trouble tracking things, seemed to have a low frustration tolerance, and was more irritable and likely to argue with someone about something I might have just rolled my eyes about previously. I asked another woman in the class what she had noticed. She was even more reticent, but with some coaxing she told me that she had noticed the same things.

I'm glad they told me what they noticed - and I am not being oversensitive to changes I think have occurred when comparing how I am coping with the world now compared to before. But this is not good...

Headaches getting better
 

My headaches are getting better. For the first time in over four months, I had four days in a row with no headaches. I am also sleeping better and this is a relief. I actually sleep soundly through the night most of the night. Still get headaches from stress/excessive worry and also noise. Yesterday was a very stressful day and then I went to orchestra rehearsal last night for the first time in three weeks and it gave me a horrible headache - all that brass! But tonight it's a lot better. The chiropractor and massage therapist both think I've come around a corner and am doing much better. This is good...