New to Forum - PCS for a 1 1/2 years and I need advice
 

Hello,

First, let me say thank you for this forum as it is the first place online where I see people describing similar things to what I am feeling. Quickly, I am 42 and I fell on the back of my head about a year and a half ago and was unconscious for a few seconds. I had a CT scan, MRI, and EEG all which were negative. But I had many symptoms everyone describes: extreme sound sensitivity, dizziness; unable to focus; can't remember details; trouble comprehending where I never had problems before; extreme irritability and crazy bouts of sobbing; unable to deal with the slightest stress; bright lights, and extreme tiredness. I could not do any physical activity that got my heart rate up. After about six months I took a very mild short bike ride, and for weeks afterwards I was almost non-functioning. It was difficult to sit in a chair and do nothing. The craziest one was if I was walking down the street and would see someone trip, not even fall, but just the possibility of seeing them fall would set off every single symptom listed above acutely.

I remember saying initially after I fell, all I want is to feel normal again. Then about a year later, most all of the symptoms went away, although the doctors I went to (concussion specialist, and a neurologist) both said average is 3-6 months which got me worried as the months went on. I had resumed almost all normal activities again, almost completely forgetting about my symptoms. I stupidly went skiing about a month ago and fell once softly, not even hitting my head. I went to the gym a week later and after 15 minutes of cardio, all my symptoms are back, even worse then when I first fell. I sleep 12 hours a day and still feel exhausted.

I had another EEG and the neurologist says there's nothing wrong with me. Acupuncture has helped me a little bit. But I feel totally at a loss. I feel like the symptoms will never go away, that I am almost totally non-functioning on a daily basis and feel even more scared that the symptoms will never go away. I feel very alone as it is difficult to get across how I feel to anyone, and I don't even want to talk about it because the more I think about it, the more insane I feel. I read that people have recovered, but I'm worried that many of those people are younger than I am. If anyone my age or older had/has anything similar to what I'm describing and recovered, or has any ideas on what could help me not lose my mind, I'd greatly appreciate it.

Thank you to whomever took the time to read this. All the posts I read are extremely helpful.

JakeD,

Sorry to hear about your struggles. Glad you found this place.

My first recommendation is to go to www.tbiguide.com and read Dr Glen Johnson's TBI Survival Guide. You can read it chapter by chapter or you can download it for print out, too. It downloads to open in MSWord.

With it, you will be able to highlight your symptoms so others can read and understand your symptoms.

If the concussion specialist is truly a concussion specialist, he should be able to explain what you are going through. Unfortunately, many concussion specialists are oriented at determining 'return to work' or 'return to play' conditions and are not much help explaining the symptoms. They are even worse at empathizing with PCS patients. You are not alone. Most of us have experienced this same problem.

There are very few procedures that will image PCS. A neuro-psychological assessment is the most common. Functional MRI can work if done by a skilled technician under a neuro-radiologist's supervision and review.

If you will tell us about your struggles, we will likely have some understanding of what you are going through. We may be able to actually provide some worthwhile help.

I would bet that your biggest problem is becoming overwhelmed. The medical term for this is 'over-attending'. It means the brain is trying to do more than it can currently handle. It can leave you exhausted and in need of sleep and quiet.

You are likely suffering from Multiple Impact Syndrome. It can cause prolonged symptoms and a severe sensitivity to even the mildest movement of the brain. Believe me, I know what this is like. I can get immediate symptoms from shaking my head 'No.'

Please stay in touch. There are many people here for you.

My best to you.

Mark,


Thank you very much for responding. I can't thank you enough. This is a very lonely experience I'm going through as I feel insane trying to describe it to people who haven't experienced it. I read the tbiguide and it did help. I realize now there's no one cure all, and that each symptom can be addressed and dealt with individually. However, when one symptom hits me, they all are soon to follow. For example, I walk down the stairs and all of a sudden I feel a little bit foggy, spaced out; it's difficult to focus my eyes on anything. If I do the slightest bit more of any exercise (the simplest walking or any kind of exercise for that matter) I'm a mess for hours, possibly days. When one symptom comes, all the others arrive very quickly: sound sensitivity, crying, pulsating on my head where I hit it, intense anger, inability to think or remember, nausea (sometime extreme), dizziness, fatigue (sleep for 12-14 hours.) Then when these occur, they last for days, weeks, sometimes months.

I think you're right, I am overwhelmed. Because the moment I notice any of these symptoms, I start thinking, oh no, not again. I can't go through another series of days like this. I start thinking, this will never go away or it's actually getting worse, it's degenerative. I start wondering if I'll ever be normal again. Honestly, I'm scared. All I can do when these occur is to lie down for a while and they subside slightly.

For the record, 95% of the symptoms went away after about a year. But since they all came back, some even stronger, I got really freaked out. I guess why I'm on this forum is because I feel kind of helpless. All I seem to hear is that I need time to heal, but when? Another year? More? And is there nothing that can help me in the meantime deal with these debilitating symptoms?


Again, thank you for your kind response. Just hearing from someone helps.


Jake

JakeD,

The most important thing is for you is to learn to recognize your triggers. Then, you need to start trying to prevent these triggers. You need to focus on avoiding the crashes so that your brain has longer time between crashes. The brain will only heal when it is crash free. The crashes can actually cause you to regress.

Walking quietly; avoiding noise, avoiding flashing lights, avoiding getting stuck in an anxiety attack from fear of another crash, anything you can do to stay settled.

I had a recovery system of a dark quiet room with a soft blanket and good music. The focus is to create a soothing environment that fills all of your sensory systems. The soft blanket is to fill your tactile sensations. The music is to fill your auditory sensation. The dark room is to settle you visual sensation. When all of these can get settled, your brain can try to reboot.

You need to find the music or sounds that settle your brain. Normal stimulating sounds or rock music, etc will not work. Once you start to find these settling sensations, you will hopefully get mental time to sort out your thoughts. It is a slow process at first but improves quickly as you learn to avoid over-stimulation.

Avoid caffeine and other stimulants. Do a search on this forum for nutrition or supplements. Proper nutrition for your brain will help it slowly purge the toxins. It will take a few months of good nutrition and low stress to see an improvement.

There is more I can say but you are likely overwhelmed already.

Take it slow. Try to find a brain injury support group. The Brain Injury Association of America www.biaa.org has local state affiliates with contacts to support groups. They can be very helpful.

You are not going crazy. You are experiencing normal PCS symptoms.

Try to relax and learn so relaxation skills.

My best to you.

Thanks so much Mark. I definitely need to relax and find more ways to do so. Your suggestions are very helpful. As are your words of support. It's just even so beneficial to me to hear that these symptoms are normal.

Thank you again.

2nd time
 

Sorry to hear about your pcs.
The second concussion usually has worse and longer lasting symptoms (depending on the severity).
The way I like to think about it is that my brain is kind of suspended in my head, but once you stretch the springs suspending your brain, they never work as well. If you hit your head again, the springs have less spring to continually protect you.

Basically once you have had one bad concussion don't fall or hit your head again...the springs are too stretched to protect you and the consequences will only worsen.

Good Luck on your journey!
Margarite