PCS - getting better?
 

Hi everyone,
I am a fairly long-time lurker but I just now decided to bite the bullet and join this forum. I can't begin to express what a comfort it has been to read the posts here and realize that I am not alone in my struggle with PCS. A brief history about myself before I ask my questions of you all.

I suffered a blow to the head by falling (whilst inebriated, unfortunately) on a cement staircase in early November of this past year. Because I felt embarrassed by how I hurt myself and because I did not realize the severity of my injury, I continued much of my daily activity/life for the first few days after the injury. Daily migraines, sensitivity to light and sound, and a poor result on the Impact test alerted me and my doctors to the fact that I was probably concussed. I took a few weeks off of exercising (I am a collegiate athlete), then jumped right back into things only to have all the symptoms come raging back. I have since had to withdraw from university, completely cease any and all athletics and exercise, and have been living at home trying to get better. I suffer from the usual PCS symptoms - headache, occasional nausea, difficulty concentrating, pain over and behind my left eye, mood swings, sensitivity to some light and loud noises, etc. Over the last few months I have gone through changes in severity of headache with little discernible pattern - some days I feel symptom-free, other days i am forced to stay in bed with the lights off due to such bad head pain. I have seen numerous doctors and am on a cocktail of various headache/known PCS meds as well as a healthy dose of supplements like D3, Omega 3, B12, etc. I try to limit reading, studying, and media as much as possible. In essence, I am trying to do all the right things. Yet, the process of healing has been incredibly difficult, frustrating, and seemingly slow - especially considering the fact that I have never had a concussion before.

The last couple of days, however, have felt different to me. I don't know if it's my mind playing tricks on me or what, but I have started to believe somehow that I am getting better. My headaches have been lighter than usual but this has certainly happened before (I had a few days in January in particular where I felt good as new and thought I was on the road to recovery, only to be hit with horrible headaches soon after). I am certainly not symptom free, my left eye aches as I type this as a matter of fact, but something inside me wants to believe that this is finally turning around.

I know I am rambling here, but I guess what I wanted to ask is - for those of you who perhaps have cases similar to mine, who have suffered a first-time concussion or a case of PCS - how did you know when you were getting better? At what point did you begin to proceed with your normal life? My doctors tell me, for instance, that the pain around my left eye may be something that will remain with me permanently. If I don't know whether the headaches/symptoms I am experiencing now will ever fully go away...at what point would you think it's smarter to resume my life activities and assume that I've healed as much as I'm going to? It has been almost 5 months now since I hit my head and I know from lurking on this site that people with PCS have suffered for shorter and longer times but the general consensus is a 4-6 month healing process, which I am nearing the end of. I guess what I'm looking for is any reassurance/guidance/(God willing!) success stories that anyone in a situation similar to mine can share. Thank you all so much for your time, I apologize for such a rambling post :)

beckster,

What do you mean by "cocktail of various headache/known PCS meds" ? Are you in school and attending daily ? Are you getting good sleep ?

There are a lot of things that can make it difficult to recover from a concussion. Identifying over-stimulation issues can help.

I had the same headaches and they went away!
 

I had the exact same pain behind and above my eye that you have. It did go away, so there is hope for that. I don't think that everyone that has PCS has the same cause of their problems that I do, but I want to make sure you know every avenue you can take to get better.

I have a plethora of eye related problems due to my concussion (read my siggy for details), and if you haven't already seen a neuro-ophthalmologist, I would if I were you. I should've seen one way back in October, but unfortunately my doctors weren't on top of things and I wasn't capable of being my own advocate at that point. You need to make sure that vision problems aren't contributing to your headaches or any other symptoms you might be having, because there are separate ways addressing vision-related issues.

Also, have you checked to make sure you don't have an injury to your neck that could be a contributing factor to your headaches? Some of the headaches that I was having were due to a gap between my C2 and C3 vertebrae. I saw a physical therapist who was trained in the Mulligan technique, and she fixed me right there in one minute. She also taught me how to fix it myself if the problem were to recur, which I have done a handful of times. I had had these terrible headaches for a month and a half, so this physical therapist was like an angel to me. Neck injuries can come along with concussions and cause headaches, so just be aware of that!

You would think that the pain behind and above my eye was caused by my vision-related issues, but it was actually caused by the neck injury. Once my neck was fixed, those headaches went away. I think this could be a good lead for you! I hope that it is anyway.

Good luck! I hope you start feeling better soon.

I had a constellation of PCS symptoms. I also had pain behind my eyes, headaches, scalp pain, trigeminal neuralgia type pain affecting my face and teeth.These symptoms started to dissipate in about a year. Stress and too much activity definitely made them worse. Even doing minor housework would trigger an attack. Rest is incredibly important for the brain to heal. Do not jump back into your normal activities too soon. I was unable to take too much time of work, and I believe that slowed my recovery.

Lumosity
 

I wanted to say that if you think you feel like you're getting better, you probably are. I found it helpful to keep a journal to track my progress, rating every day, so I could look back and see myself getting better. Lumosity.com has also been very helpful to me, though you really have to watch overdoing it on the computer. I am in no way affiliated with luminosity.com! I realize that I seem to be promoting it a lot on the site, but that's because I really do feel like it helped me and I want people to know about it. It does cost money, but I thought it was reasonable. I was actually able to quantify my improvement by playing the games on the site everyday.

Playing the types of brain games on Luminosity helps build new neural pathways. I tried playing them after my car accident, but using the computer too much made me feel dizzy and nauseous.

Lumosity games do not necessarily build new neural pathways. Many just cause lazy neural pathways to become better functioning. Many brains have rarely tried to use the functions that are exercised by Lumosity and other brain training programs.

Establishing new neural pathways is a slow and long process. It takes months and years to establish new pathways. Just consider how long it takes an infant to establish them as the infant grows through childhood to adulthood.

The person who was comatose for a long period often needs to awaken neural pathways that were dormant during the coma. Once these dormant pathways are reawakened, then there is a concerted effort to establish new pathways for pathways lost to the injury. This is a slow and long process.

Lumosity is good exercise for gaining new skills or strengthening weak skills but it is not a healing/recovery program.Often, by gaining new skills or strengthening weak skills, one can develop work-arounds and accommodations to overcome lost functions. That is the key focus on brain injury rehabilitation.

Mark,
Sorry about that, I definitely should have been more clear. I have been on all sorts of different meds over the last 5ish months but I've found that Amantadine has helped the best with removing that general fogginess that I had and so that has become a staple, as has Zoloft, of which I have been on a low dose of for only about a month so I'm not sure if I can say it's working or not.

On the advice of my doctor, I withdrew from this semester of college and spend most of my days resting at home; scrapbooking, sitting outside, listening to audiobooks, etc. I do try to stay away from media as much as possible but do get on my computer at times like this to research and find support.

Oh my goodness, that gives me a lot of hope, thank you so much!! I certainly will look into the Mulligan technique! I suppose my only concern would be in how drastic that technique is? Is it more of a chiropractic sort of POP or a gentle type of thing? I ask because I am an swimmer and I do have a high amount of ligament laxity (am double jointed all over) which results in a number of other injuries I've had to deal with along with a high inflammatory response to being adjusted in any way. Due to years and years of swimming (and childhood mild scoliosis) I am very hunched and my neck protrudes forward quite a bit which is something that most physical therapists and chiropractors probably would be VERY concerned to see but I've found that any adjustments in that area that are too extreme only send me farther forward in my hunch in the long term. Anyway, I'd just love to know a little more about how you were able to discover the injury to your neck and what the technique was like? Thanks so much, I really appreciate your help. You are the first person I've "met" who had pain around/behind her eye and it is a comfort to know I'm not alone! All the best

My 2 cents
 

I honestly don't know how much Luminosity helped me to recover lost skills, but I do know that it allowed me to see myself getting better. That I know with absolute certainty. If you have an interest in being able to quantify your recovery and see it in numbers, luminosity is great for that. My confidence had been completely decimated by postconcussion syndrome and Lumosity really helped give me confidence as I began to regain lost abilities. So it was helpful from a psychological perspectove, but I also think there were specific games that challenged me and did help me with specific skills I had lost, whether or not there is any science to back this up yet.

I would do some more research into the science behind it, but unfortunately my eyes won't allow for it! My time spent online is very minimal these days. I talked to my doctor today and apparently the therapy I'm doing can cause a spike in light sensitivity, so I can stop blaming myself so much for my current relapse!

Beckster - If your symptoms are coming and going/reducing then you are getting better. I had all the symptoms you mentioned, the only thing left now is earache and headache - but I have meds for this now. The key is to roll with it and not rush straight back into activity until you are 95% better.

I found that going back and doing things (non strenuous) gradually like the Supermarket a good test, each time it got better, until today I went and it was like being back to normal. Previously I hated the Supermarket more than anything.

Also going back to places where you struggled before with certain symptoms is a good test. If your upto it, walking is a good alternative exercise to test your progress. Swimming really provoked symptoms, even 1 or 2 lengths, today I swam 25 lengths. But don't try it if your not upto it.

Reading a book is a good test in progress for your concentration. Especially if you can manage it with background noise, something I never could have done three weeks ago.

I am going back to work this week, but still couldn't stand crowded or noises places, I will be completely better when I can manage this.

It is a rollercoaster, with good days and bad days, and I thought that I was better about 20 times over the past two months. I do feel I am getting better and so does my doctor, so thankfully I will be gradually trying to get back to normal.

Glad to offer you some hope!
 

So basically, after my last concussion, I started having that pain behind and above my left eye. I was going to a physical therapist for this vestibular therapy, and she was getting very frustrated by her inability to help me with my headaches. She finally told me that she thought I should consult with her colleague who was a spine specialist. Maria came over felt the back of my neck, immediately felt that my there was a gap between my C2 when C3 vertebrae, and then with a very gentle adjustment that took less than a minute, she fixed the gap. My headache went away instantly. She was like an angel! Immediately, my physical therapist Jodi said, "you need to be going to her." She was smart enough and good enough at her job to recognize her own limitations. (The way physical therapists are, they're all very specialized.) Jodi also recommended me for the neuro-optometrist, so I'll also always be grateful to her for that.

So yeah, if i were you I'd look for a physical therapist trained in the mulligan technique and/or get a ct scan of your neck. I only mention the CT scan because after my headaches were relieved, I received my medical records from the hospital I'd gone to after the car accident and was infuriated to find that the doctor had noted an anomaly between the C2 and C3 vertebrae and hadn't mentioned it to me! I couldn't believe it. If he had just said something to me, then I wouldn't have had horrible headaches for a month and a half! I am never going to that hospital again.

Anyway, the Mulligan technique does not involve any cracking or anything like that. You can Google it to find out more! I'd be interested in knowing if you ended up having an issue with your neck. Good luck!

Test
 

I thought I was getting better this week too. I had a couple of good days. So I tried grocery shopping, a big trigger for me. That brought most of my symptoms back. Bummer. I was so hopeful. I'm at month six. I had more good days around Christmas. But I think I have been working too much since then. My advice would be to rest more, but don,t let depression take over.

Sorry about your injury. It is hell, isn't it!!!
I have slow progress...baby steps, really, and setbacks when I overdo things.
I was so looking forward to the six month mark because my doctor ASSURED me that it would all be gone. Not for me. I think if you are continuing to feel better slowly, that is a good thing. Each injury is different. Rest is important but I also try to get back to living...sometimes I overdo it. Grocercy store, staying up late, etc.

Good luck!!! Hang in there.