How long have you had PCS?
 

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.

How Long...???
 

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.

Yes, there is hope!
 

Dear Mint et al,

PCS McGee is right -- it CAN get better. My then 14-year-old daughter had a concussion playing basketball 17 months ago and several weeks later was hit in the head with a full backpack. Without going into all of the details, life was hell and there were many times that we gave up hope. But we found that the right combination of acupuncture and Effexor helped. Yes, McGee, the latter is an antidepressant, but the way it works for TBI is that it and other antidepressants promote NEUROGENESIS, to re-establish nerve pathways in the brain.

Anyway, I just came back from visiting my daughter in overnight camp (she's been away nearly 4 weeks) and she said that she feels normal again. She's had only two short (5 to 10 minute) headaches and no more light/sound sensitivity, difficulty reading (focus/concentration), dizziness, fatigue. This, despite being slightly sleep deprived. (This is a girl who needed 12-14 hours of sleep at the height of her PCS.) The true test will come when school starts, but we'll cross that bridge when we come to it.

Keep us abreast of how you're doing and keep your chin up.

PCSMom

Glad to hear that your daughter is doing well!

PCS takes so long to heal that it's difficult to be patient and let the healing process go at its own pace and it's easy to give up especially as the symptoms randomly get worse sometimes. Does anyone else experience that some weeks are worse than the week before?

Mint,
Yes, 3 steps forward 2 back! This was definitely us. My son would relapse alot, depending on stimuli. He is continuing to improve. He will be starting his Junior year in high school this September, 7 months after his concussion last February and we will have to see how it goes. He has a pretty intense class load and I hope it will not stress him into his symptoms again. PCS is so hard, and impossible to predict what is too much and what is just enough. Hang in there and keep on hoping for the best. You are not alone.

Finally diagnosed
 

After 6 months of doctors trying to tell my son that the vomiting and nausea he had every morning was due to stomach problems (even though he told them he had probably sustained a concussion days before he fell ill) he was finally diagnosed this week with PCS-and by a gastroenterologist at Children's Hospital in Boston.

He had months earlier undergone ultrasounds of his stomach, kidneys, liver and spleen, had an upper gi and an endoscopy and a lot of blood work-all which were inconclusive. One doctor told him he was suffering from Cyclical Vomiting Syndrome.

Now that we know what is the proper diagnosis he is going to have a treatment called "LENS" which stands for Low Energy Neurofeedback System. Although his first session is not until later this week, what I understand it to be is a procedure that monitors and analyzes EEG (brain activity) using the EEG information as feedback. The signals which are recorded through electrodes influence the feedback and normalize the brain activity. It is supposed to improve functioning much quicker than other forms of neurofeedback and it is FDA approved.

I googled it and got a lot of information. I will get back with how it is going.

Thank you
 

Hi everyone,

I'm currently in tears after having read all your posts. Here I was thinking I was going crazy and I'm thankful that I'm not the only person experiencing this problem.

I was involved in a car accident just over three weeks ago and besides soft tissue damage, I hit my head pretty badly (my partner and I were very lucky to get away with lots of bruises, since we rolled 3.5 times and the cars been written off).

After the accident, I spent a couple of nights in the hospital and was then discharged. My head didn't seem to get better and a cat scan showed that my sinuses had filled with fluid. I was on antibiotics which I finished last week and was feeling really good. By Sunday, I was back on the couch and two days later (today) I just feel totally crap (sorry, Aussie slang).

I've also been told that I've got something called Benign Positional Vertigo, but I don't care what I have, I just want the boat to stop rocking and want to stand on still land again!! I can't sleep and when I do have horrific nightmares (not about car accidents) but about death and being chased by very scary people and aliens.

I keep using the wrong words (I love my words and hate this aspect) and I'm an emotional wreck. These are about half the symptoms, but the main ones.

My family lives on the other side of the country (six hour plane flight home), my partner is a six hour drive away, and the nearest doctor/hospital is an hours drive. I feel isolated and alone, but now relieved that others have experienced something similar to what I'm going through.

Good luck to everyone. I just want to get better and soon. I don't know if I can put up with this for 4 years!!

How long
 

I am in my fourth month with this mild TBI

Cassical- I too have the issue with words which can be like a pesky fly at times when I am trying to write. I also spent a lot of the first month thinking I would wake up and feel everything was back to normal. My second month I began to feel really helpless as I couldn't go out and do "normal" things without getting sick, cutting them short, or showing up at all. For me, even though I have only been released to work part time it does help me keep my eyes on the bigger picture that someday these problems I face now will either be "cured" or I will find a way to adapt my life around them instead of letting them adapt my life.

I have BPPV too or that is what they tell me. I have recently done the canilith maneuvers and am hoping it will cure my new seasickness that I have most of the time. It is extremely frustrating at times not to be able to go to the grocery store, or get "stuck" somewhere from the vertigo so I now carry a cane to help stabilize myself and plan a lot of extra time when I go anywhere that has open spaces which seem to affect my vertigo the most. I have felt lucky that people overall are very helpful at assisting me out of those places I have gotten trapped in. I also found that walking near walls helps. Often times I am able to get in somewhere and seem to expereince a lot of confusion leaving, so after talking with a friend who had similar problems, I took his suggestion to take a different path back out so that my brain doesn't have to process the same space again. Of course, this is not possible in all locations but I take advantage of it when the opportunity arises.

I am also from a smaller community and felt quite isolated as my family is not super close and my boyfriend dumped me when I was no longer "fun" anymore. If you have the chance at all, you might want to consider asking around your community of people who have had head injuries before. I have been lucky to connect with a couple of people in my community, and beyond their knowledge of how you are feeling, you might be able to get out and about without feeling out of place. I often get nauseous, have to stop driving or quit the activity and it's a very good feeling to know that the other person was once in that boat too!

Hope this helps, and I hope you don't give up on this journey!

hi concussiongirl and thank you for telling me of your experiences...

this time last week, i was so good, my head felt so great and i was looking forward to getting my life back onto track... today, i was back at the hospital again (headache just got way too much for me and anxiety set in and i couldn't cope)... the doctor was very nice and gave me an extra two weeks off on sick leave and told me to go home... so it looks like i'm about to book flights to get to the east coast of oz... now if i could just stop crying and get some decent sleep i'd be happy...

my small community incorporates seven whitefellas and about 50 indigenous... my boyfriend is trying to understand what i'm going through, but he doesn't deal with emotion very well, so i can't lean on him to go through this... but he does provide comfort where he can...

strangely enough, the vertigo was pretty much under control today (yesterday was a horror), with a little bit tonight as i write this (laptop on belly, laying on couch)...

crossing my fingers for you... i hope things go well for your recovery...

Please take good care of yourself. Vertigo is one of the hardest things to work your way through. So I know exactly what your going through.

I can make a recommendation when it starts to get really bad take a couple of really deep breaths and focus on something across the room if at all possible even a imaginary object. THis is something my physical therapist taught me and it really helps.

Also take your time and try to slow down. And let yourself recover as much as you can.

Donna

What Dmom said!

Look, I've had more concussions than I can count, one skull fracture, two go-rounds with meningitis, lead poisoning, and over-exposures to some real nasty solvents in the workplace. Guess what? I still keep getting better!

Yes, it's a learning curve for those around us when we get into emotions or foggy brain or sudden fatigue, etc.. Those people who truly love us come to accept these realities, just as we have to find our own levels of acceptance. Those people around us who are not willing to deal with these issues can (and often do!) take a stroll.

The few people standing with me today are the other heroes who love me as I am in the here and now.

This recovery business takes a LOT of patience. That's the hardest part for us head-injured, in my humble opinion. A lot of us experience increased impulsiveness, irritability and impatience. I've spent my life learning cognitive tools to deal with that aspect alone, and I hope I never stop learning.

Let us be gentle with ourselves. We can get through this. :grouphug:

Jeff

Update
 

Hi everyone...

again, thanks to everyone for your stories and how you've been coping and recovering from this awful thing...

the headaches started getting really severe, and being so isolated i started to get very worried (interpretation = "i freaked") and went back to the doctor (another hour and a half drive on dirt road through the bush to get there)...

the doctor told me quite honestly that if there were anything else wrong with me that they couldn't do anything, so i was best off going home to where my support systems are, along with medical care on the door step, instead of being so far away... she said she could arrange for a medical certificate and all i had to do was arrange the flights... so off i toddled and booked my flights....

ok, next time remind me to discuss flying with you guys before i do that again!!! to get home from where i work takes three airflights, all from 2.5hrs up to 4hrs...

i was apprehensive to start off with, which i thought was kinda reasonable... plane took off and within a half hour to 45mins i was ready to rip my head off... the pain was so intense, even though i'd dosed up on painkillers before taking off...

plane landed and i almost kissed the ground when i got off the plane... i was alive and pretty happy about it... i thought very long and hard about it and decided that i wasn't going to keep going... wimping out was much better than continuing with the pain i'd been going through...

i took myself off to the nearest hospital and spoke to a doctor about it... he suggested that with my sinuses, i had experienced a sinus squeeze, where an air bubble has expanded and had nowhere to go - similar to needing to equalise your ears when scuba diving - and that was what had caused the pain... he suggested that i could take some pseudoepherdrene, except that would just cause high blood pressure and cause the headaches to get worse... he also suggested that i not fly for at least another three weeks...

so, now i'm stuck in the city of Perth, the capital of Western Australia... thankfully, my family all love me and all wanted to come to my rescue... my younger sister is flying in tomorrow night and then together we're going to catch the train over to the east coast to Sydney, which will take three days, followed by another train in order to get to Canberra... (whooops, wiping away tears again - wishing they would stop leaking out of my eyes!)

so, lesson i've learnt? don't bang head during car accident... *lol*

carol

Call it what it is: TBI
 

Hi Mint

I think the term post-concussive syndrome is really not accurate. You need to think about concussion for what it is: a brain injury. Brain injuries can widely range in severity. What most people call PCS is actually "mild traumatic brain injury." The word mild is misleading, because the effects of MTBI can be debilitating and life-long. I suffered a TBI a little over 2 years ago. There is an excellent book on the subject of MTBI, which I recommend to you. It is called Coping with Mild Traumatic Brain Injury: A Guide to Living with the Challenges Associated with Concussion/Brain Injury, by Diane Roberts Stoler and Barbara Albers Hill. This is a very comprehensive book on all aspects of MTBI, how it affects your life, physical, mental and emotional effects, and recovery. It is an excellent resource.
-pasara

Hello, Post concussion syndrome is a new term for me. I have never heard of it before coming here last week. I received a tbi when I was five about 42 years ago when I was hit by a car. Among other injuries, I had to relearn how to talk, and my personality was drastically changed. There has really been no therapy available for me when I was growing up. I just had to learn, relearn and adjust on my own. School was difficult for me, and I was always put in the slow classes. M y moods were always dark afterwards and as a result I have very volatile mood swings. I do talk with a therapist, and take a mood stabilizer which does seem to help. Other than that I just try to learn the best way I know how. I have developed skill as a medieval calligrapher over the past 5 years or so. :icon_neutral:

This is interesting PCS McGee... everything you have written I can relate to. I have had PCS since April 2005, with some days waking up like it is day 1 again. It's been harder than anything I know of. Even using the PC makes me very dizzy (anyone know why this is?)
Your message is a ray of hope to my life! I'm sick of being sick...

I've had the most recent bout of PCS symptoms since 2004. I also had an shorter bout where most of the symptoms went away where the injury was in 1998 and the symptoms faded dramatically on their own in a few years.

The most recent concussion would probably be termed 'moderate', with only a few seconds of greying or blacking out after impact. However, the symptoms from this concussion are more dramatic, with the following symptoms

*Concentration issues
*Dyslexia when writing or typing
*Issues forming coherent sentences or speaking verbally (loss of vocabulary, etc.)
*Headaches (these are fortunately getting a lot better and are few/far between)
*Feeling of pressure/'congestion' in the back of my head, at the base of the skull/beginning of spinal column (nothing has shown up on any x-rays or MRI about vertebrae being out of alignment or any soft tissue issues. This also tends to occur more with headaches. I also have borderline-to-high blood pressure, which I'm sure ties into this symptom somewhere)
*Inability to deal with being in large groups of people-I'm almost agoraphobic
*Depression and anxiety issues
*Radical mood swings
*Easily irritated/extremely short temper
*Extreme inability to deal with stressful situations-at some point where the stress level reaches a certain point, all sorts of things begin misfiring. Something seems to take over on a fight-or-flight-instinct level and I just physically leave the situation. Naturally, this has caused a lot of problems, and has cost me one job, one relationship, and has repeatedly strained friendships.

Overall, I've had some symptoms improve, but overall things have been steadily declining.

I share a lot of the frustration that the other posters have with the medical community's reaction and treatment- I remember doing a lot of online research and took a bunch of printouts to the doctor when I first got treated, and the doctor actually TOLD me to my face that I was more well informed and knowledgeable about PCS than she was. Her treatment, rather than refer me to a neurologist, was to tell me that I'd have these symptoms for the rest of my life and to prescribe anti-depressants (Xoloft, which did absolutely nothing and I have since stopped taking them).

Wildcard, your symptons are just about the same as mine other than the dislexia. (spelling?) What interests me the most about yours is what you said about the base of your skull. I have the feeling there that when I am extra tired and not the just tired feeling, my skull feels like it is not attached to the very top of my spine. I have asked and asked about it. Like you, nothing showed up in the MRI. My blood pressure is also high and I have to now take pills for it. 2 years ago I was rushed to hopsital with a hypertensive crisis 230/190 - the pain in my head was absolutely unbearable fortunately I didn't have a stroke as was expected! Pre accident I didn't have any signs of high blood pressure. I don't know if there is any link. I also feel that I know more about PCS than my GP - even though he had it at med school. I note that the insurers psychologist has actually criticised me for studying up PCS - but it we didn't ourselves who would! The accident that caused this for me was in 2001 and was very minor. Since then I have re injured about 4 times, the latest being 3 weeks ago - the last brought back the worst headaches and memory problems. The headaches have got better and are mainly when I let myself get too tired. The key is not to get too tired.

I think that is the key too. My headaches are worst when I am stressed or tired so I always try to get enough sleep.

Mint, do you find that if your night's sleep is interrupted it can ruin your next day and in some cases the next few days. I notice that if I am too tired going to bed I can't sleep that night (just like a grizzly todler) and then the next day is a mess and then it takes a couple of days to catch up. I had eye surgery the other day and was given vallium - great sleep that night!!!! I can't control the icons - can't put them where I want to and now I can't get rid of the jolly thing!!! It was a grin to go after the vallium!

@Lucy

Yes, usually if I have had a bad night's sleep then the next day I feel terrible. Very sleepy, headache and generally not alert, although this has happened after a few days of good sleep too.

I've had what I believe to be PCS for 22 years now. I haven't been clinically diagnosed with PCS but here are my symptoms after suffering a severe concussion / seizure disorder when I was about 10 years old.

- Headaches (constant dull pain)
- Fuzzy thought (but I get by)
- Memory problems (I'd tell you what they were, but I can't remember. :winky:)
- Depression (difficulty being happy at or feeling good, if I am happy it doesn't last longer than an hour.)
- EASILY Irritable (my girlfriend can attest to this)
- Dizzy (well it's kind of dizzy.. It's like I can't see straight/focus)
- Trouble concentrating (I can't even focus on conversations many times)

------

someone here also mentioned difficulty forming sentences or speaking sometimes. I also have that problem that may be related to PCS.

A more complete analysis of my condition is below, which I have pasted from my first post here.

I wasn't diagnosed that long ago, probably mid-May, early July. But with having 3-4 head injuries in my life, the doctor said I should have probably had it checked earlier. Go figure... lol But, my family is helping me cope with it because I can't seem to get it around my head that I can't be rude to them lol

Pcs
 

Hi all,

Im new here and since reading PCS Mcgee and all your other posts its good to know im not alone in the way i feel, i have learnt alot from your posts. I can relate to many of these symptoms. I had a steel frame fall onto my head 11 months ago, i was really drunk at the time (was not knocked unconcious) and thats when it all began. I suffer mainly from fatigue now which has changed my life drastically, i cannot do any overtime at work without regreting it, im very sensitive to alcohol, i have a constant fuzzy head which worsens as i get tired and basically ive just changed. Ive found alot of my life now revolves around resting and sleeping which ive been told is one of the best cures but after 10 months my positivity is wearing thin. Im 23 years old and its hard having to cut down your social life so extremely. Anyways its good to have somewhere to read about this syndrome that not to many doctors seem to know about, im going to research some of the therapies you have brought up but living in little old new zealand i dont know what ill find.

Cheers

Hi Mattioncar, I am also in New Zealand. My main problem is the fatigue. When I am over tired everything basically turns to custard. I work 3 hour days now and am in my 6th year of this. And yes, life certainly changes! I ended up going to Australia for a QEEG - which was the only test that actually showed the physical evidence of head injury. I can give you contact details if you like. Are you living in Auckland? Lucy

Hi lucy, Yep i am in auckland, yeah any more info would be great, was there anything they could do for you?

Mattioncar, are you still working full time and what specialists have you seen so far? Have you been dealing with ACC? As far as social life goes = that is about the first thing that goes down the drain!! The noise is very difficult to cope with and the recovery time after wards is not worth it = took me a while to come to grips with this. I have also given up on alcohol loved red wine and rum previously - now one glass of wine and instant headache. One thing that I haven't mentioned before is that you certainly find out who your real friends are!!! The best thing that you can do for yourself is rest before you get too tired and all the symptons get out of control. Lucy

Yes i have been working full time ever since accident, 40 hour weeks aren't to bad, any more and i get very fatigued. I was dealing with acc i had an occupational therapist visit me and saw a neurophsycologist, neurologist and a neurophysiotherapist all didnt find much if anything and there conclusions were you're doing really well i think it'll fix itself eventually. That was about 5 months ago and i feel much the same. Have you been down the road of therapy as others talk about on here? Or are you looking into anything else?

HI mattloncar - I am in Auckland as well and had similar treatment. What about going back to your GP - that is if he understood head injury and start there by telling him that you don't feel any better and asking for a referral. You must not get yourself too tired. I am now of the opinion that if you do too much initially it slows recovery. If you like give me your phone no and I can give your a ring or you can email me - my address at work is Lynlee@powrie.co.nz

Is it getting better?
 

Things HAVE improved a lot for me.
There that's the positive bit.
I don't want to forget that part of the original question.

I have had Post-concussion syndrome for just over 18 months now. And I still have symptoms on a daily basis. So that doesn't sound too hopeful. However, if I caste my mind back to a year ago and what I was doing and feeling like a year ago, I am tons better.

I have kept an accident diary. Mostly I got bored with it because each day is pretty much the same as the last in the catalogue of symptoms. However, it is good to note when you do something for the first time and you see that you must be recovering.

I felt really dizzy for 3 -4 months, but that gradually improved to the point where I started driving again. For the first 6 months, it felt strange to walk as if I couldn't naturally direct myself in a straight line. At 18 months walking seems pretty much back to normal. At 6 months, I tried to go on a run. It felt really strange. This morning I went on a run and it felt pretty normal. I am really unfit now after 18 months of not taking much excercise but I was tired out in a normal way not a concussed way. After 6 months I felt that I could go swimming again. It felt strange at first but soon improved.

The biggest improvement that I remember was that after about 7 months I actually something. Before that I was constantly in some degree of pain or discomfort. I remember being asked if I had enjoyed going on a walk, but walking along the beach in the sun is hard to really enjoy if you have a headache and feel ill. But after about 7 months my discomfort was low enough that I could enjoy things.

So, I guess that's the good news: it is possible to improve. Things can get better.

However, if you were ask me if I feel completely better, then the answer is no. If an uninjured person woke up feeling like I do, I'm sure they would feel quite justified in calling in sick from work. But just because the symptoms haven't completely gone doesn't mean that you aren't getting better, slowly....more slowly than anyone would want, but there it is.
If I compare today with yesterday or even last week or a month ago, I don't see an improvement. However, if I go back a year, then sure I can see that I am actually getting better.

I am starting a new part-time job next week, so if that works out that will be another step in the right direction. The last neurologist that I saw said that my condition would settle down in 1 to 3 years. I could be on track for that. But I don't think that doctors, even neurologists, know beans about the condition. You could be better off getting the responses of people who have gone through the same thing, even though I'm sure that all injuries are different and everyone responds differently.

So, I hope that that might help someone to look on the bright side, even though, let's face it, the condition is really pretty bad; it can still improve.

I'm going to try variious treatments, one at a time, and see if they help.
They are acupuncture, craniosacral therapy, neurotherapy and amitripyline.
So, I would be particularly interested to know if anyone has tried any of these and how they got on.

Wishing you all the best or at least better health.

Thanks Concussed Scientist for your response.

Things have improved for me too so there is hope for every one else. Progress has been much slower than expected (it has been nearly two years since I first posted here). Things don't change much from day to day for me either but if I look back in 3 months or 6 month steps then I can see that my condition has improved and there are activities I can take part in and enjoy.

I'm still very vulnerable and intense activity can trigger my symptoms again and I continuously try to find what my limit is.

Keeping a diary of my symptoms is useful and it helps me see objectively if my condition is changing. Apart from that I am not having any treatment, I am just waiting for the day my life will return to "normal" again avoiding anything such as very active sports which may trigger my symptoms again.The good news is that over the last two years, it has become more "normal".

Wishing you all good health too.

got worse
 

hi peeps

good to see old and new posters I think I actually got worse for a time, that maybe due to scaring , because neurons heal at such a slow rate, if I get overloaded thats when the mix ups/ white outs happen' I adapt to try to limit this with limited success , so living in slow mo, like if I open up the throttle, the brain stalls, so finding it hard to apply the use it or lose it analogy, I hate ! not a word I like to use when mid sentence / action or thought my mind go,s blank like the inside of a table tennis ball ( or a stunned mullet as us kiwis would say :D) the confused look on peoples faces , when they cannot understand why, I have taken to saying excuse me, I have a head injury an some times this happens, but this would mean nothing in the world of employment ? please remember we all have this in varying degrees, people can and do recover but unfortunately not to order

vini and others,

That "mind going blank like the inside of a table tennis ball" sounds so familiar. My wife can see these instances by the look on my face. Sometimes, I will get stuck in a stare, usually with a stern facial appearance.

Regarding the fatigue, make sure to eat a good morning meal and lunch. Maintaining good blood sugar is very important. Here in the US we have TV ads for drinks that support mental awareness. Most have DHA and other good stuff. Be sure to feed your brain even if you short change your body. Get to understand the Glycemic index. It relates to how long a food will take to be digested and absorbed. Refined sugars cause spikes, complex carbs and proteins take much longer. The alcohol is a known problem, but also MSG, aspartame, sucralose and other excitotoxins.

Let those friends who show concern know how to help you. If they understand why you need to leave an environment (noise, lights, chaos etc), they can be more supportive.

Download and rpint out Dr Glen Johnsons TBI Guide at www.tbiguide.com It is about as good as it gets for PCS support and knowledge.

Good luck as you consider these life changes. They are worth it in helping you have a more stable life.