Hi,

It's been 9 months since I suffered a concussion and I still haven't fully recovered yet. I know that PCS takes a long time to heal. It's the longest I have ever been ill and probably it's the same for others in this forum. I thought I would see how long others have had this condition. Maybe this can help put things in perspective for me and others.

How long have you had PCS symptoms and how bad was your original injury?

Are things getting better for you?

Thank you for your responses.

Mint

Gosh I have had PCS since last August, so its been almost 1 year.

And my case of post concussion syndrome wasn't considered that
bad. And it really shouldn't have been. But its taking a long time
to go completely away. But then I also just was diagnosed with central abnormalities of the brain which just means that I have other issues that cause the dizziness, and balance issues.

So its got competion for the problems.

Donna

I seem to have had PCS for far and away the longest of anyone that's posting on here... my, THAT'S depressing. Anyway, I initially hit my head over 4 years ago, in April of '03. It was a pretty nasty spill and was no doubt complicated significantly by the fact that I was really drunk at the time, but I never lost consciousness, so as far as the conventional medical field was concerned, I merely suffered a mild concussion. According to all of the doctors I saw around that time, I should have healed completely within a week. Clearly, I didn't. Over all of this time I have learned that I not only have PCS, but I also have PTSD, so I'm fighting both of those at once, and by all published accounts (of which there are none) I'm actually winning.

My story's a really long one, rife with undereducated/jaded doctors and loads of wrong turns, so I won't get into all that here. Just know that I felt really really really horrible for a really really really long time. We're talking horrible where you're terrified of the weekends because you can't go see your doctor on Saturday or Sunday... horrible like gorging yourself whenever you feel able to eat because you only have a normal appetite for a half hour a day, if that. I've been in bad spots, the spot that I'm in now is not nearly as bad, though I'm not at all satisfied. I still plan to make a full recovery... I'm kind of a summunabitch, as anyone who used to know me would tell you, so I've taken a "either I'm going to beat this or this is going to beat me" stance with this thing. I'm pretty sure I'm going to win this fight, too.

This morning I woke up feeling just like I did before all of this happened (well, not just like I did, because I still had some chronic pain stuff, psychologically it was RIGHT there, I LOVED it)... it's weird, but that's the thing I've really noticed about this syndrome, is that waking up is a profoundly horrible experience. Every day I'd wake up and the first thought on my mind would be "****, another day of this crap" as I'd immediately realize that I still wasn't okay. Well, this morning I woke up and my first thought was "ooohhh wow, I remember what THIS was like!" That was the first time I'd had that feeling... well, ever. I'd woken up like that thousands of times before 2003, but I'd never had such a profound appreciation for it before. It may not be there tomorrow, but I know once I've had it once if I keep working I can have it again. Mmm... sanity.

I'm still not completely healed, and my life's still not what anyone would call "good" at this point, but I've experienced more healing in the past couple of months than I had in the 3+ years that came before... 3 years after doctors told me that my injuries were likely permanent, I'm within walking distance of a full recovery. I can feel it. I hate to be all tony robbins here, but I know that a lot of you on here are dealing with lazy doctors who want you to accept that your injuries are permanent and "get on with your lives" (like that's possible when you're dizzy 24 hours a day), or doctors who don't believe that there's anything wrong with you at all, or doctors who just want to put you on antidepressants because they think sprinkling a little seratonin on your brain will make everything all better... uggh, these people infuriate me to no end. Anyway, the point that I'm trying to make is that these injuries are not permanent, you can make it back to where you used to be, or at least back to a place that's comfortable enough that you won't care about any tiny piece of yourself that you may have lost along the way.

Oh, another thing about me is that I write REALLY long posts on this website. It's another affliction of mine, unfortunately, medical science has yet to find a cure.

6 months ago i hit my head, and since then i'm just like PCS McGee 24 hours dizzy, and very fatigue. My life really stinks at this point, i run my own company, i love my job but i can't work 100%, it's frustrating me, and i'm really scared that it won't go away!

The story of PCS McGee sounds very similiar to me, The thing with the wake up in the morning is a profoundly horrible experience! Your story also scares me alot, 4 years of PCS is a very long time!!

A neurologist told me to go to a eye specialist, there gonna give me some special prism glasses, my vision is strabism after the injury, in two weeks i'm getting these glasses..

I also go to a chiropractor, i had 3 consults but so far no results yet..

a forum poster named 'Yannimac' had some interesting post about neurofeedback, i read a couple of site about this technique with QEEG's en training the brain, i found in very interesting and i'm very curious if this had a possitive impact on one of you?

just like my last post, i have to say it again, i'm from the Netherlands so sorry for my bad english!

Thank you for sharing your stories.


PCS McGee, I and I suspect others here find it interesting to hear your experience.

Yes, the stories shared familiar, and the issues, concerns, Questions esp. "how LONG??" evoke fear, frustration, and more... When [you] don't, aren't healing as "should"; when you know this isn't right, when medical pro's are dismissive , misinformed, misguided, Miss ..the issue , while [you] Miss Life , as it was before, hope it will be again , while struggling to get thru each day, hour, minute....
all those horrible feelings and experiences .... terribly familar....

my last "mild" TBi that resulted in PCS occured Dec. 2006. Not my first TBi but seems THE one that created more problems & many dysfunctions, esp. Cognitive, perceptual, Behaviorial,emotional, along w/ physical {persistant & severe headaches, visual & other sensory disturbances; Sleep disorders & more) -- slowly improving...

This last TBI got the most attention & "treatmt"...but most of the medical interventions NOT as successful as hoped, nor provided when most needed, when I felt worst, was most dysfunctional.

Besides my PCP-I went to neurologists, and other specialists . Physiatrist-Dr of Physical medicine & Rehab--"brain injury specialist--one I'd put most hope in, was most frustrating. he was very drug focused, and when I didn't respond well to meds he prescribed , said he couldn't help me. PT & other therapys had been mentioned, but were not "prescribed". He did refer to NeuroPsychologist for testing & possible neurofeedback but did NOT occur when most needed.
When I was most affected by PCS symptoms & problems, extremely dysfunctional & despondant that I didn't want to live, to go on--was too hard & frustrating, overwhelming... I'm more hopeful now, but are still challenges.

still waiting for appt. w/NeuroPsych
and continue to educate & inform self whle seeking more treatmt options & "self help" to progress thru this process of healing.

I'm not sure when improvements commenced --I felt stuck for long period & began to doubt but gradually more positive and improvements continuing. but still affected --memory, & other cognition; fatigue & sleep issues and more-- not all is healed and some may not-- I do feel I won't be same as Before TBi accident --but which??

My first TBi was 12 yrs ago --when I was hit by car as pedestrian. Since, many problems, "neuro' issues including episodes of drop attacks; originally thought Seizures but tests ruled out; these falls have resulted in several additional "mild" head injuries & concussions. Question: What's cumulative "damage" of multiple TBI ??

I've been dealing w/ chronic pain disorders since pedestrian accident; some problems exacerbated w/ last concussion, others began.
Bladder control, sleep disorders, headaches, visual & other sensory disturbances. I continue to be hypersensitive--to noise- doing better w/ light. Photophobia --kept me out of sun , bright lites, w/ shades drawn. now I 'm beginning to go outside more, but still limited. I couldn't wait for spring, summer but haven't been able to enjoy these seasons, or Life in general, but, gradually am getting back to living not just surviving .

How Long?? will see... it is a process. still plenty of downs, but now feel more hopefull, that I can " heal "

Healing is unique process... and Prayer ... to have the Courage to change what I can, Accept what can't & Wisdom to know the difference...

Prayers & Blessings to all....

Pono,
I'm so glad to read your positive attitude. Keep at it! Life is good and is fragile. Your post are good and helpful. I hope you continue to have less bad days and more good ones.
Nancy F

Dear Mint,
I just signed on as member. Sorry to hear of your situation. I do not have good news when it comes to longevity of PCS. My neurologist informed me that if it lasts beyond several months there is a greater likelihood that it could possibly last the remainder of one's lifetime. I also have worse news than that, at least as it relates to my condition. This may also serve as a warning to other PCS sufferers.
My PCS has been ongoing for 34 mos. after suffering blow to the head in a trucking accident. Initial symptoms: dizziness, facial numbness, blurred vision, tinnitus, tingling in all extemities. Numbness and blurred vision went away within weeks. Dizziness later diagnosed as positional vertigo. Had limited success with therapy and can no longer drive a big rig. I have be careful with head movement and positioning. I was able to go back to work 1 yr. 8 mos. after accident. All other symptoms continued but I could live a reasonable normal life. But, that came to a screeching halt in Feb. of this yr.

I became totally exhausted physically over the course of several days prepping for and making a move to another house. My arms and legs became heavy and I had great difficulty getting through my shift as a maintenance (primarily janitorial) worker. I had to spend almost all of my off time in bed just to try and regain enough strength to go back into work. After 2 mos. of this my life just became downright miserable. I felt like a dead man walking. I could not take it anymore and had to resign my position. I basically spent the first week in bed. I regained some of my strength, but I soon found out that even minor exertion sapped my strength significantly. Just being on my feet for a couple of hrs. with limited walking was exhausting. Forget about doing anything that required more exertion, especially if it required the use of my arms.

After 2 mos. of being off work I had no choice but to contact my neurologist. I cannot get in until Sept. In the meantime I am finding it difficult to find a job I can do. It is very frustraing and scary. Is this exhaustion going to be long term?

I wonder if my body crossed some threshhold that severely aggravated my condition? I can only speculate that it had since the areas previously affected, my arms and legs, have degenerated to this present state.

I guess this could serve as a warning to anyone to not pysically exhaust themselves. I could possibly see this happening if I had been physically inactive prior to the move, but I really was doing well physically in terms of performing physical labor prior to the move. It is puzzling.

Take care Mint and my best wishes to you. I am sorry I have nothing positive to say to you, except maybe my warning.

I have a update on me. In my situation the Physical therapy for my balance and other issues is really helping my problems. For the first time in my life I feel like I am alive again. Its been many months since I've felt like it was okay to walk in a building with my head held high and act like a person.

I am very pleased with what is happening it will really be a thing that when I can say that my brain lets me walk outside as I walk inside that I'm on the road to recovery. I personally can't wait till my immediate boss sees the difference.

I'm not telling anyone till they see me in person how the difference is going.
I'm doing so well I want to travel on trips just to show.

Such a difference.

Donna

Exhausted: Please take the time to browse the conversations on this page and read what other people have had to say (myself included). There are all sorts of stories on here about people getting better and better by venturing out and finding therapy, or finding supplements and vitamins that work for them, and even a few of people finding medication that have helped them greatly. PLEASE DO NOT LISTEN TO THIS GARBAGE ABOUT YOUR CONDITION BEING PERMANENT.

Here's the problem with most neurologists: While their knowledge of which parts of the brain control which parts of the body is fairly impressive, they don't know anything about treating the brain. They're great at studying people, looking at these bizarre fallouts from head injuries and saying "wow, that's really interesting, I might write an article about you for a medical journal", but when it comes to a patient telling them "I cannot live my life this way, I am in constant pain, help me get better" they'll usually give a prescription along the lines of "get more sleep, and don't overexert yourself until you feel better." Maybe they'll prescribe anti depressants, but even then prescribing anti depressants to a brain injury patient is a lot like prescribing robotussin to someone with throat cancer. Right part of the body, but the medicine is completely irrelevant to the problem.

You're right to say that it feels like your body crossed some sort of threshold, because it most likely did. There's a certain level of stress that anyone's body just cannot handle, and once it crosses that level it will need help to get itself healed. You likely crossed that threshold, but I emphasize again, PLEASE don't believe that your condition is permanent. Do you really think you could live the rest of your life this way?

I didn't start actively healing from my brain injury until 46 months had passed from my initial blow to the head. I'd sustained 3 seperate head injuries in those 46 months, each making my problems bigger and more suffocating until I finally just couldn't get out of bed anymore; most any neurologist would have told you my problems were permanent, but I found the right therapies for me, and now I'm almost back to 100%.

Don't give up, and don't listen to anyone who tells you that your hell is permanent. You can heal.