New here - MargN, 3 months PCS
 

Hello. I've been reading this board for weeks now, and first, I want to thank all those on the PCS/TBI board that take the time to share their stories. It's very comforting to know we are not alone.

My injury occurred Nov 28/07, when I fell on the cold sidewalk up here in Canada, after a work event (and too much wine), and knocked myself out. An ambulance took me away to a Trauma Unit for a couple of CT scans (a small hematoma resolved on its own) and to a hospital bed for 3 days observation.
My worst symptoms came a few days later at home, including headache, dizziness, irritability, some initial vision issues, ringing in the ears and trouble concentrating. Also my sciatic nerve went bizerk for a few days, but that resolved. I spent weeks in bed regardless, 5 weeks off work, etc.

My biggest things now (3 months out) are dizziness (which is not really being dizzy but having a balance sensation that's disturbing), ringing in the ears, some headaches, sensitivity to excessive noise/light and inability to exercise or handle any stress (physical or otherwise). I'd have to admit I'm somewhat depressed, anxious and irritable.

I'm working with a physiotherapist now to find my baseline and try to get my activity level up. I miss my daily workouts and volleyball terribly, and I'm tired of my husband having to do everything, including household and childcare things. I'm back to work but only part-time, and I'm struggling with it.

My GP, though caring, doesn't seem to offer much help. I'm reading all threads to research other things to try. Thanks to all for putting up links, books and other possible places for answers.

MargN

Hi Margn - so sorry to hear about your fall. It is early days yet for you.

Really all that I can suggest is don't over do anything. My problem is that I tried to carry on exactly as I had been. So be kind to yourself, take it easy, let your husband look after everything as I firmly believe the early days effect your over all over out come for recovery.

You have probably read about me, I am now 6 and half years post accident and have huge fatigue issues, my doctor has now given me 3 months off work as I was totally exhuasted and the past years seem to have caught up with me together with depression. At the moment I am overly anxious about everything - todays issues: had a puncture in my car, have to get that fixed and orgainise a birthday cake - 2 things to do and it is enough to get me to panic - so hard to believe compared to the old me. I still can't tolerate noise especially noise from crowds, nor bright lights.

If you are feeling depressed what about seeing a psychatrist? My one told me last year that he thought that if he had seen me in the first 6 months I wouldn't be like I am now - I don't know how factual that really is but it is food for thought!

So be kind to yourself and give your brain a chance to recover. Pushing yourself simply has the reverse effect and I found that it is hard to understand that.

Lynlee

Thanks for sharing your story Lynlee, so that I can learn.

It's tough to read all the threads about how long recovery can take. Initially, I thought I'd be better in a few weeks, but now I realize it will be a long haul. :Sigh:

I'm finally admitting to myself that I will not be playing any volleyball this season, and that was a very hard thing to do! I am an avid athlete and watching all my hard work atrophy away (i.e. muscles turning to skin and bone) is heartbreaking. But it's just too stressful to keep hoping I'll recover in time to salvage some of the season. Now I'm ready to look at other things like trips with my family. I think this will help me mentally over the next few months but I'll sure miss the game and my teammates.

I'm working 4-5 hrs a day, but it's tricky when I look so normal. Thankfully, my company is being terrific.

I see my GP tomorrow for a follow-up and I also have more physio. He's working on my neck mostly so we'll see how that goes. Last week he activated symptoms, so now he feels like he has a baseline and will back off. I don't want to get too hopeful though, and will just keep trying things as well as resting, keeping the stressors down and sleeping/eating well.

MargN

Welcome
 

Hi MargN Welcome to this forum. tbi and pcs are very difficult to recover from and it's going to take some time, maybe a lot of time .

I've been in the recovery process from tbi/pcs for over four years now. I was hit by a Drunk Driver on my bike concussion and in a coma for 4 days. Bad day at the office.

Theres at great deal of information here on TBI/PCS written by people who are suffering from this invisible disorder and sometimes it good to know you are not alone in this battle.

Learn as much as you can about the causes and symptoms as they are all unique to each individual.

Take Care Jeffn

What I've learned....there's lots to know and learn about PCS! My son (age 10) is about 2 months out from a mild concussion from hockey, leading to PCS. His chief problem is headaches. We rallied last week and saw "1's" (headache scale with 10 being the worst -- but you probably know that!) on the chart for the first time. We were hopeful to return to school this week, but that has proved difficult. Poor kid, we also had to finally break the news that he couldn't return to hockey this season and we postponed a planned trip to Disney (haven't quite figured out how to avoid the other kids blaming him yet!).

I think Jeffn said it right when he called this an invisible condition. Trying to be the caretaker and advocate for my son, it is very difficult to know when and how much to push, or if at all. The psycological part of this is SO important. I'm now thinking just the stress of going back to school is what set off the headaches this week. We're now looking for a counselor for him (which was recommended by his neuropsycologist).

Hang in there. I have found reading about other people's experiences helps to balance the reality with what the doctors tell you. I also have to give a shout out to NancyF...thank you so much for leading us to Dr. McGrath. He's been wonderful! MargN, his focus is on sports-related concussions...check out his website at www.sportsconcussion.net

Good Luck to you!

Hi Margn, welcome to this forum. Having PCS and not being able to exercise can be very, very frustrating. I was active in cycling before I was hit by a car while riding my bike in May of last year. I still get headaches and feel somewhat dizzy today, although I have been feeling much better lately. I tried to stay involved with my bike club by attending meetings and social events. It is hard not to be able to participate, but I think it helps to stay in touch with people. I still can't exercise much, I have been doing some easy pedaling without getting my heartrate up. I hope it won't take this long for you to recover. Don't try to push yourself.

Thanks Sissy. It must have been hard for you to give up cycling, too.

It's still surreal that I will miss my whole season this year. I've been out to watch a few times, but I gotta say I don't like it much. I want to be on the court! I know they would have me as a coach, but I'm not ready to stop playing yet.

My strategy is to start focussing on other parts of my life...summer activities in the mountains with my kids in terms of a new trailer; a little travelling (if I can tolerate flying and/or long drives), etc.

My GP yesterday wanted to put me on anti-depressants, but I don't want to go that route. I'm going to try taking a few days (or weeks if I need it) off work to get all the symptoms down and then only go back 4 hrs per day. I believe I've overdone it anytime I've felt normal, and this has caused relapses. Like you said "don't push yourself." I have good support around me, so I just need to approach this differently. Ironically, the approach needs to be almost the opposite of an athlete's approach, i.e. push through the pain, be disciplined to workout even if you don't feel like it, work through the bad days, etc. This will be a great learning experience if nothing else.

MargN

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I do have one thing to add to the anti-depressant angle. THere is one that
you might read up on and consider. It also has help for pain management.
So it might also be of benefit to you its cymbalta.

It is more of a mood stabilizer than for depression and it is something I personally was put on before my TBI. I have 3 kids that have lots of disablities that make me very stressed at times. And I could tell I could
use a small amount of help.

Now its also helping many other things, I was just diagnosed with fibromyalgia
about 3 weeks ago, and along with a muscle relaxant it has done wonders the increase.

I am one that has always fallen. And now have been in Physical therapy for
many months, for many issues. But my main issue is for vestibular or balance,
vertigo and just learning to use my abnormal brain again. And its a lot of
help.

But I still have to be very careful.

Donna

I am sorry MargN to read about your current situation. I understand how difficult PCS is to deal with. I've been suffering since May07. I'm also off work and have been since around the beginning of september time. Before that i was off the odd week or two here and there. I know at this moment iin time work would be impossible for me as my headaches are severe luckily my work have been pretty understanding.

A doctor i seen in the first few weeks told me that the best thing to do is to try and carry on as much as possible. Now after this time and i have done some research into PCS i think this just highlights how ignorant some doctors still are to PCS as i do agree how i rushed back into things is partly the reason why im still suffering. Ofcourse you do have to stay active but should never push yourself as i did for the first few months.

I was prescribed an antidepressant for pain (amitriptylene) and i found this to help my pain a great deal after 3/4 weeks. I am not taking them anymore though as i started to have palpitations. I would though say i was just unfortunate, all drugs have their side effects some that bothers some people and not others. I would say to anyone suffering to look into using this or something similar as many do agree that they can help. And we all know anything is worth a try when your desperate for some relief of these symptoms.

I wish all well :grouphug:

Thanks for your comments. Update is I've now decided to try the anti-depressant my GP prescribed (Effexor) because the stress of this situation is starting to affect my sleep and general mood and that's not good when recovering from a TBI. My GP and I also put together a plan (and a note for my boss) on how long I should be at home, when I could consider going back part-time and how my workload will need to be reduced (or a support person provided) until I can get back up to speed. I felt much better after we did this. TBI causes such a loss of control that this little exercise helped me feel like I got a little back.

Am also going to talk with a psychologist Friday (who has experience with TBI patients), and am booked for a repeat CT (not expecting to find anything) and an appt with a neurologist next month.

So even though I feel lousy right now, at least feel like I'm doing everything I can to get better.

Need to go rest now...computer work bugs me too!

MargN


[\ I'm also off work and have been since around the beginning of september time. Before that i was off the odd week or two here and there. I know at this moment iin time work would be impossible for me as my headaches are severe luckily my work have been pretty understanding.

I was prescribed an antidepressant for pain (amitriptylene) and i found this to help my pain a great deal after 3/4 weeks. \