Almost two years after concussion and it just gets worse
 

Hello!

In november 2013, two days after my 23rd birthday, I went to the hospital for a foot operation and ended up with a concussion. Now my 25th birthday is getting close and I have really mixed feelings about it, since it's also the second anniversary of my concussion. The problem is that I still feel far from good.

What happened was:

Just before leaving the hospital I fainted and hit the back of my head on a bathroom floor. Woke up very, very confused. Had absolutely no idea where I was or who I was. I had this strange feeling of living another life and suddenly waking up in a unknown situation.

Anyway, I had to be lifted back into bed and was informed that I "Probably never fainted that long time before". Later my dad talked them into letting me stay overnight, since this was a small hospital some hours drive from home. I was placed in a small room and told to "relax and watch some tv". By this time I knew who I was and remembered what had happened. I tried to watch tv, since they had turned it on for me, but I had a hard time staying awake.

The next day (a Friday) I was sent home, still very tired, confused and with a bad headache. Spent the weekend trying to read, without any succes. So Monday morning I went to the doctor and got diagnosed with concussion. Got sent to the big, local hospital for a CT-scan, which looked ok.

A few weeks of more or less bedrest followed. By spring I felt better, still couldn't watch tv or use the computer, but managed to enjoy a trip to Amsterdam with a friend. By summer I felt even better and went to the cinema (with sunglasses and earplugs), which together with a hour of kayaking, gave me bad migrenes for two weeks.

In the Autumn I tried to start studying again, even though I still couldn't read and projectors gave me very bad headaches. I managed a month before I had to quit.

I don't know when it turned, but sometime after that it just started to go downwards. Right now I feel like my head hurts more and more, and I feel more and more tired.

A year after the concussion I finally got to see a Neurologist, and started trying different medicines. So far I have tried two different blood pressure-medicines (not a good idea since I have unstable blood pressure), a epilepsy-medicine and a epilepsy/diabetes-medicine. Since none of them worked I was scheduled for botox-injections this Tuesday. I have had a problem with fainting (especially when I was younger), so I was lying down. However, after seven injections in the forehead I fainted and the Neurologist decided that botox wasn't anything for me.

One thing that really worries me is that my fainting has changed drasticly. I've fainted approximately 15-20 times before, so I know the feeling and how I react. I used to wake up quite quickly and feel okay long before anyone else allowed me to get up. However, the two times I have fainted after I hit my head, I have been unconscious for longer time, I've had cramps (which I've never had before), I have no idea where I am when I wake up (and I'm "dreaming" while unconscious) and it takes a lot longer for me to recover. This last time I had to be rolled out to the car in a wheelchair. Afterwards I slept 4 hours and then 12 hours the next three nights. Also, previously lying down or drinking water have prevented me from fainting, while I have now fainted one time while drinking water and one time lying down.

I don't know what is going on, but it scares me, because it just feels wrong. I mean, I had 17 years of experience when it comes to fainting, and then two years of a totally different kind of fainting. Do anyone know what this could be?

I also wonder if anyone have any tips on getting better? I'm so tired of being tired all the time.

I get headaches from all electronic screens, music, fluorescent light, driving in a car or bus, boats, using an electric toothbrush, running, walking to long, long conversations, etc. Do anyone have any ideas for activities? Appart from resting I mostly knit, listen to audiobooks, colour in colouringbooks (by Johanna Basford) and sometimes solve jigsaw puzzles. I try to take a short walk every day, but find it hard to know how much I should pressure myself.

The symptoms I still have are:
-Daily headaches/migraines
-Dizziness and vertigo (feels like I'm going to fall when I close my eyes, because I don't know what's up and what's down)
-Tired/fatigue
-Very sensitive to light, sound and vibration
-Difficulty with memory and concentration
-Still can't read longer texts (like newspaper articles)
-Struggle with everyday things like making food, going to the store, washing clothes, showering...
-Difficulty finding words and talking

I know I should be positive, but right now life just feels like an endless waiting time. I also find it difficult to really belive that I will get well.

Sorry for my bad language, I'm Scandinavian and my English isn't what it was before my accident...

JuliaP,

Welcome to NeuroTalk. I am sorry to hear of your struggles.

Don't worry. Your English was/is great. Many of us English as our only language people don't write as well.

Have you had any testing for vasovagal response ? It sounds like it may be part of your problem.

You may have an upper cervical injury at C-0, C-1, and C-2 that causes head aches and interferes with proper neuro function.

Please read the Vitamins sticky at the top. It has good information.

It may be worthwhile to have a Neuro Psychological Assessment to measure your neurological functioning.

I'll do some research later and see if I can find anything that addresses your symptoms.

btw, What drugs were tried ?

My best to you.

Sorry to hear you're having a bad time of it, many here can understand the exhausting nature of PCS when it lingers for months. I know I didn't think there was much progress until a year had passed. It can gradually lead to depression, you sound like your confidence is down.

I think your pre-existing condition is compounding things, have you always had low blood pressure?

Have you tried spending a few days without any visual stimulation, i.e. no computer, smart phone or TV to see if this effects your fatigue. I would continue with the daily walks as good blood circulation is important to both and heart and brain. A few times when I did too much exercise I felt like crap afterwards but it passed after a day or two of rest and I actually felt better for it - but it's best to not push too much. Also, I wonder if there are some desensitising exercises you can do?

One thing I notice is that I miss out words when I type with is annoying lol.

Thank you very much for your answers! :)

I did not know what "testing for vasovagal response", so I googled, and if I understand it correctly it is like tilt table tests? I have not had that. I have an appointment at the hospital for investigating my vertigo next month, so maybe something like that will be done then.

I've had two MRs of the head (I was in a study of mild TBI), should an eventual injury to the upper cervical had been visible on those? Or do I need to ask for a MR of the neck or something like that?

Sorry, I have tried to read the sticky about vitamins, but can't progress that much information. I'm sorry about that, it feels bad that other people made an effort to make that tread but I can't make an effort to read it... Is vitamins something I should worry more about, even though all my vitamin-levels looked great on my last blood test? I take multivitamins and fish oil.

I will look into Neuro Psychological Assessment!

The drugs I have tried are:
-Atacand (active substance: kandesartancileksetil) and another blood pressure medicine
-Orfiril (active substance: Natr. Valproas)
-Topimax (active substance: Topiramat)
And now I am on this drug called Sarotex (active substance: amitriptylin).

I don't really know if I always had low blood pressure, but I think so. I've always felt a bit dizzy when doctors measures blood pressure, but I always thought that was normal. It wasn't until the Neurologist tried to measure my blood pressure standing up, when I was on blood pressure medicine, and commented that it was not normal to almost faint from measuring blood pressure, that I thought about it.

However, I have had the problem of fainting since I was 6 years old. It wasn't really investigated since my dad used to have the same problem as a child. I was mostly just that kid who fainted and had bad nosebleeds, and I would probably just grow out of it... And it has been a lot better in the past years. Before my concussion I hadn't fainted since taking the swine flu vaccine in 2010, so over three years.

I haven't spent days without visual stimulation for some time, so maybe you're right and it is time to try that again! I sometimes tend to get stuck every now and then, doing something stupid on my smartphone (which have brightness and blue light turned all the way down). I know it's stupid, but it just feels good for the moment, to zone out of my head.

How did you find out that the exercise made you feel better in the long run? I mean, how did you know that you should continue exercising that much?

I also have a problem with knowing when something is to much. I just do things and don't realize that I shouldn't before I have a very bad headache. It may just be an Asbergers-problem, I'm the same way with hunger...

What does "desensitising exercises" mean? Is it like training the eyes to be less sensitive? I didn't know that was possible.

Thanks again for your answers! I do realize that there is no quick fix, but it is very nice to hear other things than the doctors "wait and see" and other empty words!

The common upper neck injury is usually too subtle/mild to be imaged on a CT Scan or MRI. It is more likely to be found by an upper cervical chiropractor, or osteopath or physical therapist.

You should be taking a bit more than the normal amounts of B-12, D-3, magnesium w/ calcium (citrate is best). The minimum health range for B-12 starts at 300 picograms/mL but the good level is close to 1000 picograms/mL.

Sarotex (amitriptyline) is commonly prescribed for PCS headaches, insomnia and depression. It is not a healing agent. None of the meds you listed are.

Your smart phone may be a cause of fatigue because the screen changes so quickly as you scroll. That is a lot of visual processing for an injured brain.

Hi Julia, before my injury I always exercised a lot so wanted to stay fit if at all possible. I gradually built up my walking distance, but pushed it a couple of times and felt exhausted afterwards. One early time I had trouble getting back and had to sit down for a hour. The next two days I rested and recovered and felt stronger. afterwards. Another time, about 6 months in, I tried to jog and got a sharp pain in the front of my head so I stopped that right away, now I can jog without pain.

I think it's understanding where your limits are and the triggers to feeling bad that is difficult. Degrees of brain fatigue is hard to judge, but pushing a little every so often worked for me.

Thank you again for your answers!

Ah, okay. I went to a specialized physiotherapist (don't known what they're called in english, but they do manual therapy) every other week or so this Spring, and he did not say anything about a injury. The same physiotherapist have helped my stepmother a lot with her neck, but for me the treatment mostly helped with my bad posture.

I will get some more vitamins then and look into my B12-level from last blood test!

Are any medicines healing agents? *curious* My neurologist only concentrates on finding a cure for the migraines, because apparently everything will be allright after that...

Thank you for the reminder! I remember now that the scrolling used to make me sick in the start, but now when I'm a little better I hadn't thought about that for a while. I have now taken up the habit of scrolling with my eyes closed :) I've also tried to be better at not using my smartphone unnecessarily.

Thanks for sharing your experience with walking! :) I had the same experience with jogging, and will not try that again for a long time... Would you walk with a headache or turn around when you noticed it?

I have a doctor's appointment tomorrow and think I will mostly focus on my changed experience with fainting, get my values from last blood test (in numbers, so I can check the B12 for myself) and try to get referred to get a neuro psycological assessment. I'm a bit nervous about it though, the doctor seems to think that the neurologist and the vertigo-specialist (that I haven't seen yet) is enough. She mostly just smiles and tries to ensure me that all will be well, which just gives me the feeling that I could be well if I would have wanted and believed it enough... Urgh, I really wish I could watch a movie and clear my head of it!

. . . try behavioural or neuro optometrist for light sensitivity, reading difficulties, concentration. Psychologist suggested this move for me and by wearing corrective lenses my world returned to me. I struggled to read for any length of time, failed to grasp what I was reading, apparently not uncommon with brain injury.

Eyes specialist gave me the all clear, testing by behavioural optometrist entirely different. Will see if I can find link that I found helpful.

Chin up, there is always HOPE, helping other possibilities emerge. This site giving all of us hope, inspiration and information for positive change.

Best of,

www.vision-specialists.com is the site which speaks of symptoms.

Brainlash a book by Gail Denton am told is a great resource. Try googling YouTube 'What are the core therapies for Mild Traumatic Brain Injury' and also 'Advice for those looking ahead after a Brain Injury' excerpts by Gail.

Hey, I'm sorry you're going through all of this. I am also 2 years (and 2 months) post PCS and it can be heartbreaking at times. This being said, I still continue to recover and see changes every day and haven't given up hope. Every 6 months I look back and feel like a different person than I was before. Cardiovascular exercise has helped me feel more normal as long as I don't push myself too much. I still feel like I will recover fully eventually, despite all of the naysayers. I am young as well, (17) and I think that age can be a contributing factor to how well you adapt to the injury. I think a really important thing to do is stay positive. WHEN I recover, I will let you know. Good luck with how you're feeling and I hope you feel better soon.

I've been without Internet for a couple of days and when I got home yesterday evening I was very low on energy. But I really appreciate your tips and encouragement! :)

I will ask someone in my family to help me look up Neuro/behavioral optometrists in my city! Thanks for the tip!

I started listening to the core therapies for TBI on YouTube after reading about it in one of the stickies, but couldn't really take in/comprehend the information... Will ask for help with that too!

tbi_survivor, it sounds like you are on your way to recovery! :) I hope you will continue to see changes for the better!

The problem for me is very much that I don't get better, but worse. When I look back to 6 months ago (or a year ago) I see that I had way more energy and less headaches. That makes me scared.

I kind of know that the good thing with concussion is that you will recover eventually, at least that is what my doctor told me early on. And I can see that I learn valuable lessons about resting and listening to my body. I'm just so very, very tired.

Woohoo! I actually feel better! :D

The other day my eyes were hurting quite much, but I just felt very happy, since it's probably the first time in two years that my eyes have been hurting more than my head! It's kind of like my feet. During a trip to Amsterdam last year I suddenly realised that my flat foot hurt more than my bad foot, which also made me very happy.

Now I just struggle a little with constraining myself from jumping up and down and doing too much.

Of course I still can't watch tv, use a computer, go running or anything like that, but just not having headaches all the time makes it so much easier to enjoy life! Like some days ago I had a long conversation with my boyfriend about mathematics and I actually felt like I had access to my whole brain again, even though I wasn't thinking that fast. And I just feel this difference in the way I get tired.

Two weeks ago I had an EEG to rule out epilepsy and it made me worse, but only for something like two days. That's great progress!

I also had vertigo testing and they didn't find anything, but referred me to balance training at the hospital, which I really look forward to starting! I also liked that the doctor was clear with the fact that he is convinced that my vertigo problem is physical and not psycological, and that today's knowledge of vertigo is just not complete.

I hope and think that my progress towards getting rid of PCS have to do with my new medicine, which is supposed to improve my sleep quality and prevent migraines.

Seing how much better sleep matters I've been thinking about my sleep quality. My boyfriend has been telling me for years that I hold my breath while sleeping, does that mean that I have sleep apnea?Woohoo! I actually feel better! :D

The other day my eyes were hurting quite much, but I just felt very happy, since it's probably the first time in two years that my eyes have been hurting more than my head! It's kind of like my feet. During a trip to Amsterdam last year I suddenly realised that my flat foot hurt more than my bad foot, which also made me very happy.

Now I just struggle a little with constraining myself from jumping up and down and doing too much.

Of course I still can't watch tv, use a computer, go running or anything like that, but just not having headaches all the time makes it so much easier to enjoy life! Like some days ago I had a long conversation with my boyfriend about mathematics and I actually felt like I had access to my whole brain again, even though I wasn't thinking that fast. And I just feel this difference in the way I get tired.

Two weeks ago I had an EEG to rule out epilepsy and it made me worse, but only for something like two days. That's great progress!

I also had vertigo testing at the hospital and they didn't find anything, but referred me to balance training, which I really look forward to starting. I also liked that the doctor was clear with the fact that he is convinced that my vertigo problem is physical and not psycological, and that today's knowledge of vertigo is not complete.

I hope and think that my progress towards getting rid of PCS have to do with my new medicine, which is supposed to improve my sleep quality.

Seing how much better sleep matters I've been thinking about my sleep quality. My boyfriend has been telling me for years that I hold my breath while sleeping, does that mean that I have sleep apnea?

I'm also thinking about doing something about my problems with going to bed at night and falling asleep. I've seen melatonin recommended both for people with Aspergers and people with PCS, so I wonder if I (being in both groups) should try to get a prescription?

"My boyfriend has been telling me for years that I hold my breath while sleeping, does that mean that I have sleep apnea?Woohoo! I actually feel better!"

It sounds like you need to get checked for sleep apnea. Do you snore, especially before you "hold your breath" ? Sleep apnea can make minor concussion issues a 100 times worse. Not only do you not get good REM sleep, but the brain is left with a toxic combination from the lack of oxygen.

Your boyfriend can do a lot by observing your breathing when you sleep. Counting the duration of the apnea events. Counting how many per hour you have. Noticing whether you make snoring or other sounds when you are breathing.

You can have Obstructive Sleep Apnea where tissues obstruct the airway. You could also have Central Sleep Apnea where the autonomic nervous system fails to cause you lungs to draw a breath until you are in oxygen debt.

Getting a good diagnosis can change you life.

Mark

Thanks again for your answers!

I don't think I snore, at least no one have ever told me I do. Apparently I just don't breath, but when I'm told I take a deep breath and then start breathing again. Maybe I just forget to breath, I do that while awake too, but I'm trying to be more aware of that.

I will talk to my doctor about it when I see her next week. I will also look into the two types of sleep apnea you mentioned!

Things are starting to fall into place, which feels really nice. Next week I'll get the results from the EEG, I'm waiting for an neuropsycological assessment, I'm getting help with trying out filter glasses, the new medicine is actually preventing the daily migraines and I started balance training last week (and managed to realize that I have to be careful, since balance training apparently gives me migraines...).

I also experience the effects of antidepressants when you're not depressed. The other day I got really excited and happy about eating oatmeal for breakfast :)

As you probably already know, the CT and MRI and not often helpful in the diagnosis of a concussion, but they can rule out some more serious causes for your symptoms.

Most important for anyone who may have sustained a concussion is to allow your brain time to rest. Watching TV immediately after having a concussion was not good advice!

There are no prizes given for toughing out the pain of a concussion and the most important thing is always to rest and let the brain heal. My brother and I are high school athletes and very competitive but nowadays the smart approach to athlete with a concussion is "when in doubt, sit them out".

The same applies on or off the playing field.

Julia,

What you describe sounds a lot like Central Sleep Apnea (CSA). When I was struggling with CSA, it sometime effected me when I was awake. I would suddenly find myself gasping for air. At first, I thought it was an anxiety attack but once I realized I was not breathing, I understood. I first became aware of my CSA during an EEG with a sleep session. I could not fall asleep because as I tried to relax that last bit to fall asleep, I would start gasping for air. I repeated this until I realized I was simply not breathing properly.

I had conditioned myself to breath consciously, rather that automatically. It turns out the hard pillow under my neck that protected the electrodes was holding my neck in a bad position. Once I straightened my neck out and let the inflammation subside, my normal breathing returned. I was able to repeat this head/neck position at home and the CSA returned.

I hope you can find some help. Sleep specialists do not have much experience with CSA. Plus, the treatment is not reliable. I had to learn how to sleep with my neck in a good posture so this did not happen. It took a lot of discipline to get a good night's sleep and to allow my neck to heal and stabilize so it was not so prone to inflammation. Some upper neck therapy can be helpful in the beginning to allow the C-1 and C-2 to find a proper position.

It is important to find a solution to any apnea. There is a cumulative effect that leave the brain with slow deterioration. I could tell you a horror story but I will spare you.

It is a primary cause of daytime fatigue and sleepiness.

My best to you.

Thank you for your comments!

Yeah, to watch tv was very bad advice. For the last two years I've been wondering so many times what would have happened if I wouldn't have started my concussion with watching tv. But it's kind of pointless. I think the hospital just had bad routines and that the nightshift of nurses started working in the time between my faint and me watching tv.

I've probably tried to toughing it out at times, but it's also been a lot about finding the balance between my aspie head, that needs distraction and order, and my concussed head that needs resting. And of course the feeling of responsibility and expectations.

I'm seeing my doctor tomorrow, so will definitely talk with her about sleep apnea and breathing! Thank you for all the information! :) I wonder, do you breathe automatically now? And is it true that sleeping on the side is better than sleeping on the back? I usually find it easier to breath when on my back.

I had a small nose operation three years ago, because my nasal Conchas were too big, but I never had a check up afterwards. Maybe that's a good place to start, while I wait for whatever my doctor will refer me to.

I found some horror stories while googeling, yes. Hua! I won't give up after the "your sleep is just restless because you go to sleep to late"-answer this time. Luckily I've stopped going to doctors alone and my boyfriend is very persistent, so I think it will be okay.

Your turbinoplasty (nasal concha) should have improved your breathing from an obstructive point of view. I had a turbinoplasty 2 months ago/ Aaaaahh. To have open nasal passages is great. If you have Obstructive Sleep Apnea, you sleep would be worse on your back. But, Central Sleep Apnea is different. It is a condition where the brain fails to tell the diaphragm to take a breath.

For me, my CSA was likely due to inflammation in my upper neck and brain stem that decreased blood flow causing the autonomic nervous system to dysfunction and forget to tell me to take a breath. Resolving my neck issue over time has resolved my CSA for the most part. I sleep best flat on my back with my head and neck straight.

I don't really know if the turbinoplasty made it easier to breath, I still feel like I don't get enough oxygen when I only breath through the nose. Oh, and now I can't remember if my doctor checked my nose too, or just my throat (tonsils I guess), when I saw her on Wednesday. Well, it probably doesn't matter.

My doctor referred me to sleep checking or maybe some doctor. I was quite exhausted at that point, since I had agreed to let a student train patient relations, so I had been there for more than half an hour when I finally saw my doctor. Anyway, I got referred to something, but it will probably take almost a year. So meanwhile I try to find a good chiropractor like you told me earlier.

Thanks for all the excellent information! :)

I was feeling better before Christmas and now I'm trying to reach that level again... However, even though I pressed my limits too much several times during the holidays (and ended up exhausted), I still managed to do and enjoy many things I couldn't half a year ago. It's really nice to actually see progress!

During Christmas I also tried to appreciate the fact that I'm getting better at recognizing my migraine triggers. For example I could tell after just a few seconds that the lights my stepfather wanted to put in the Christmas tree were not good for me (then I concentrated on feeling gratefulness instead of guilt when he used more than half an hour making other lights possible). I also realized that adrenaline gives me horrible migraines, which I should have been able to tell from the fact that stress does...

My biggest mistake during Christmas was ignoring my worsening headache. I had a nice family Christmas, but it ended in tears, a splitting migraine and the feeling that even brushing my teeth was like climbing Mount Everest. I know that I should learn from it, but I'm ambivalent about whether it was worth it or not.

Several times I was very scared that I would lose my progress and end up like I was before.

I'm a bit nervous about a dentist appointment I have tomorrow. I don't think I have any cavities, taking care of my teeth was the only thing I felt I had control over right after my concussion. But I will most probably have to get my remaining three wisdom teeth out.

The problem is that I had a short, simple dentist appointment last August, fixing a remain from the braces I used to have, and it was exhausting, so I'm worried about what a longer dentist appointment will do to me.

My dentist offers local or general anesthesia (nothing like the American anesthesia that generates countless of YouTube-clips), so I'm trying to figure out which one to choose. I had a wisdom tooth removed some years ago and was exhausted for some days, so I don't even want to think about how I would react to it now. I had the normal, local anesthesia then, so I'm thinking that maybe general anesthesia would be better. However I wonder if anyone have experience with general anesthesia together with PCS?

I tried searching this forum for experiences with dentist appointments, but couldn't find anything that answers my questions. I have waited to get good enough for removing the teeth for the last two years, but now at least one of them is so bad that I can't really wait much longer...

I had 6 teeth extracted last May (2 wisdom teeth) under general anesthesia and did not have any problems. Considering the fact that I have had no luck with any meds for headaches, I was amazed. Since I also have problems sleeping due to PCS, anesthesia offered a wonderful, restful sleep. Hopefully, anesthesia will work fine for you, too!

Good luck and try not to stress over going to the dentist.


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