[JuliaP]

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...

[Mark in Idaho]

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.

[SuperElectric]

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.

[JuliaP]

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!

[Mark in Idaho]

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.

[SuperElectric]

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.

[JuliaP]

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!

[chasann]

. . . 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,

[chasann]

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

[chasann]

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.