How long does recovery take?
 

Wow, I just discovered this forum and it is amazing to read so many people dealing with and feeling similar things to what I have been going through.

My background - I had 4 concussions in a 18 month period (2 car accidents and two skiing accidents - all not my fault by the way). The first 3, I bounced back pretty quickly, minor headaches, but generally okay after a couple of days. The 4th one was a different story. It was 18 months ago and I am still recovering. The headaches are less frequent, but still just as intense. I have difficulty comprehending what I am reading and working (I'm an accountant) can be frustrating. I have difficulty sleeping still and have been taking noritriplyne throughout my recovery to help me sleep. My neurologist initially said to give it 6 months. After a year, he referred me to a neuropsychiatrist, who said 18 months is the bell curve for major improvement. My neurologist basically said there isn't anything else he can do for me at this point.

Has anyone else's recovery taken this long? I keep trying to remain optimistic, but if my state is permanent, I need to find a new line of work. Functioning at 60-70% of your previously self leaves me making lots of mistakes.

Also - has anyone else had vision issues? Sometimes I get what I can best describe as double vision. I can focus on things close in, but when I look 10-15 feet away, my eyes sort of bounce around and my vision is blurry. If I really stare as something, I can focus on it, but it takes tremendous concentration and usually leaves me throwing up and with a major headache. I have 20/20 vision and this only happens a few times a week, but it is scary when I am driving or jogging.

Recovery
 

Hey there SoccerMom - My heart went out as I read your story. My TBI was in December of 2006. I was in a coma for 31 days and sustained a serious brain injury. I was in the hospital for 3 months. Personally, I can remember NOTHING from about New Years Eve of 2000 (or thereabouts ... and it's VERY spotty up until then)

It's been 13 months for me and my neurosurgeon and neurologist BOTH don't seem to know! They both have ideas but I have just come to accept the fact that 2 years is a major milestone!! 1 year was a big date but 2 years is supposed to be bigger.

From the 2 year mark, I was told its "very possible but after that length of time, we just can't make even an educated guess."

My daughter had 2 concussions occur a month apart ( no fault of her own)
just bad luck and ice. She has been suffering with her symptoms for 2 1/2 years. The vision problems are finally starting to go away. She not only had blurred/ double vision. She also had vision that was pink. Her head pain and dizzyness was extreme. Doctors/Neurologists/CT's/MRI's didn't show or help.
After extensive searching on the internet we hit on help. If you search for
" Balance Exercises" you will find some useful ones. They are usually used for people who have had strokes. But we thought that there was nothing to lose so decided to try. She has only been doing them for two weeks now. And already we see improvements. Her vision is almost normal. She can read for extended periods of time without the blurriness, and getting dizzy from it.
So it might be worth it to try some of these. Basically the drs. had told her that there wasn't much they could do for her and that she'd have to learn to live with it. She's only 23 years old, and has been home sitting in a chair for over two years while they just gave her meds. I wish that I had known that there was rehab type things that we could be doing from home to help her.
Good luck. I hope this helps and that you are well again soon.

glad you found NT & this group but sorry for the reasons that brought you here.

"How LONG... Recovery" frequently asked but don't think anyone (DRs, otherz) can answer....
it's a process...... as unique as each --brain, body, mind & soul
of those who've come here sharing various experiences & insights.... the good & not so... our similarities & differences...

for me, it's become a long journey ....

12 yrs ago I was hit by car--TBI & other injuries. several concussions & "mild" head injurys, after mostly from falls.
Last year I was struck in head by hydrualic lift; this accident set off problems Dx'd : PCS. been up & down since, w/ more downs....

I 've had vision problems similar to what you describe (comes & goes)
Persistant severe Headaches w/ nausea & vomiting .
Photo & phonoPhobia & other sensitivitys
I also don't sleep -- after 1 or 2 hours wake- Fatigued, in pain, irritable, angry & other emotional and many cogntive dysfunctions ...
and more... too much more....



Many "alternatives" have been discussed -- therapys like PT; NeuroFeedback chiropractic, "self help" techniques & other options
others may share more ....
I'll update on some things I am & will be trying...

If you can remain Positive...(many will tell you that's most important) .... it's very challenging
after years of chronic pain, neuro & other med problems, dysfunctions, Losses and more..
I've sunk into a low place, I wish I could Be & do many things "old self" did; I could wish List all things miss but all my wishing, hoping & grieiving hasn't changed what is NOW... perhaps more "work" and accessing better interventions & alternatives will enable better quality Life, even if It can't or won't be as before....

Yes, it is very frustrating ... and more that I can't find words for... I'm having problems trying to write, reply, stay on track.... and relevant...

I too had a DR --"brain injury specialist" --tell me "can't help you" .... after I didn't respond in a month to few meds he prescribed. I hoped for more from him--other therapys, interventions. I'm still seeking better ways to get relief & improvements.

Hope you find what you need....

Welcome!
 

Welcome to the forum, sorry about what brought you here though.

The only real vision issue I have is that I used to wear one contact for far vision and one contact for near (instead of bifocals). My brain was able to only use one eye for distance and one eye for close up. Since the head bonk- my brain can't sort it out and I've gone to wearing contacts for far sight and readers for reading (I'm 47- at that age where we all need readers.. ha ha)

I bonked my head in June of 07 and ended up with all of the PCS symptoms plus my PTSD became exacerbated. I also wonder about needing a new job because I can't do the same things the 'old' me used to do. It's super frustrating.

My neurologist also told me that there's nothing more she can do for me. It's all be documented, I'm on lots of meds, and now just have to ride it out and hope it eventually goes away.

I hope you get relief soon.

~Lori

I don't know how long recovery takes and that is my biggest fear for my 10 year old 5 weeks into PCS. Doctors have told us he will make a full recovery, but I don't know how they know that based on all of your experiences.

As much as anything else, this forum points out that there are always those who have it worse so we should be grateful for what health we do have -- just in case you were looking for something to stay positive about!

Good luck to you.

I have PCS but I also have other issues that go along with it.

SO some ot the things I use to treat my vision issues I can't say for sure were created by it. But it also helps it. So its worth a try.

I go to what is called a vestibular therapist. I first had to find a neurologist
that dealt with balance and vision issues. He did testing to find that I
have abnormalities in my brain. And honestly its the best news I could
have gotten. It means I don't just have a clumsy and fallen down problem.

But a real thing is going on. My therapist works with my vision and
my balance at each visit, she works on the things that I need to have
the most help with.

So for your daughter, just saying, I need to find a way to get through
this double vision that makes me vomit would be a starting place for her.

Donna

Hey Soccormom...Are you the "Soccormom" from the MS forum???

Anyway...

Friday night we went to dinner to celebrate my husband's 4 year anniversary of his TBI (traumatic brain injury). The injury was bad enough to leave him in an amnesia state for three weeks, in the hospital for ~5 weeks, and in rehab. for another 3 months.

We were told that 90% of the healing happens in the first two years. After that, there certainly can be healing, but it happens at an extremely slow rate.

I believe that headaches are extremely normal after a head injury (knock on wood, my husband never had to deal with them) and while I don't think there is anything that can "cure" them, I would think that there must be some kind of drug to help manage the pain when you get them.

Best of luck with the rest of your recovery.

P.S. Originally the doctor in charge of my husband's case predicted that worstcase, he would end up in a nursing home - best case he would be at home, but wheelchairbound and not be able to be left alone.

In actuality, he goes to work everyday (he's a mechanical engineer), skis, runs, skates and bikerides on weekends. Yes, there are definate personality changes, but he is close to where he was before the accident.

My daughter was 14 in Feb 2006 when she sustained three concussions within 3 weeks. Her two year anniversary is coming up next week. Still not 100%, but much improved with acupuncture, medication (Effexor), and now osteopathic manipulation and homeopathy. She's at the point where I don't worry about her living a normal life, with some necessary lifestyle modifications. (A lot of sleep, extra time for tests, taking earplugs everywhere to avoid loud noise, for example.) And who knows? Maybe these will pass, as well.

Maybe it was just a matter of time. But I couldn't just sit by and wait -- needed to be proactive and feel like we were doing something.

Anyway, my point is that recovery is different for everyone. Research different treatment modalities, see what feel right and follow your gut. Don't give up and don't give in.

God bless you all.

Soccermum
 

I have been meaning to respond to you for sometime but have not been feeling too good.

I had a car accident 30 years ago - when I was 21, fractured jaw unconcious for a day but recovered. Over the years I continued to knock my head and was ok, like did things like running into a ranch slider, slipped on floor tiles and landed on my head etc etc. Then when I was 45 (6 and half years ago) I hit my head on a hanging basket, was concussed - bad headaches etc and 6 weeks after that hit my head on the door frame when getting into a taxi.

I had headaches virtually immediately, memory problems - all the usual. I kept going back to the ER and was told "I devasted - had problems reading and was trying to work full time. I am a legal executive and do property conveyancing, subdivisions, tax and estate planning etc. Like I need my brain to be able to do my job. It was a nightmare, I could hardly read, my head felt like it wanted to explode.

Eventually I saw a neurologist - then she died of a heart attack. Since then I have battled with my insurer and had alll the usual about 6 months - you should be better, then told by a psychiatrist - 2 years is it you should be better.

I have managed to knock myself out again - 3 years ago - when I am tired I lose my balance and literally fall over - I landed on an umbrella urn and was k/od - stitches on the side of my eye - hospital.

At one stage I did get up to working 6 hours but was continually exhasuted and I know that quality of my work was not good and that worried me.

After the k/o my hours were reduced to 3 hours per day and I have been at that since.

I have to have a half hour rest in the morning 11.30 - 12.00 to avoid the tired yucky kind of headache and in the afternoon I have an hours sleep - if I actually manage to go to sleep I sleep well at night. Unfortunately I have been like this for the entire 6 years. My psychiatrist when asked admitted that this is as good as it gets. I am still hopeful on my good days and on my bad days I despair (which I am having a bout of now)

I would dearly love to change my jobs, but this is what I am qualified in and have been for 20 years. I believe that I now have a problem learning new information. It is ok if it is building on something I already know or is repetitive, but total new is very hard work and it is hard to keep up with changing laws.

I firmly believe and you may have read that I have said it before on this site that how you are treated in the early stages has a huge effect on the final outcome. I believe for certain that if I had stopped working immediately post accident I would be a lot better now and if I hadn't been pushed to work by the insurers specialists I would not have had the last bad injury.

You will find that you will pass the neuropsch testing well - I was told that my scores were all well above average and that the average person would be more than happy with the scores - I tried to explain that was never average or near average, I was a very high achiever and was it normal to be exhausted after the tests - all fell on deaf ears as the saying goes.

I think that you should totally avoid becoming too tired - being tired brings on headaches and pcs symptons and to remember to be kind to your self - I have had to have training in that as I have always believed (well used to believe)in mind over matter. I have really only learnt to make allowances for myself.

You did not say how old you were. I have been told that recovery is not so good over 40 and for high achievers. Do you suffer from fatigue? that is my biggest problem, if I avoid being tired I can avoid the worse of the headaches. Though if I am stressing about something or feel pressured it is instant headache.

I am sorry if I have waffled or repeated my self - don't give up hope - maybe 60-70% functioning is equal to the average persons effort - is that possible? I know that is not a nice thing to say - but it could be true!

take care
Lynlee

How long does recovery take cont.
 

Boy your response hits home.

A few answers to your questions.
I just turned 40 and I am easily fatigued. I have been trying to work a 4 hour work day, which is the most I can do. But I have an hour drive each way and am completely exhausted when I get home. I have 3 kids and find that on the days I work I have no patience. One part of me really wants to stop working because it has a detrimental effect on my life, but I worked hard for my mba and don't want to give up to this PCS. In my pre-pcs life, I worked full time and was recognized for my performance and quality of my work. Now I make routine mistakes and I am slow.

Like you , I also struggling with new information. My psych tests indicate that I have above average intelligence (90th percentile), but when you introduce noises or stress that I function at a below average level (40th percentile). Validating to hear, but awful to realize that this is what I am left with.

Thanks so much for everyone's responses. PCS is uncommon and before I found this site, I hadn't met anyone going through what I have. The weekly questions from well meaning friends like - are you better yet? are exhausting. It is reassuring and comforting to read everyone's postings. For some of us, PCS becomes a life long issue and it is helpful to hear how you do it. I try to look at things optimistically, think about the good days on the bad. The last accident I was in and the most serious of my 4 concussions - I was really lucky to survive. Each day we have with our family and friends is a gift. PCS is a pain and has a serious impact on my daily life - but at least I'm still here! And it is nice to know we are not in this alone!:)