[JNC3]

New to this website and thought I would tell my story. I've formatted it in a readable way, with short paragraphs.

This is an exhaustive account of my battle with what I now know to be PCS, but for months believed to be severe insomnia, depression, anxiety, and mononucleosis

My hopes in writing this is that someone out there can relate and draw a glimmer of hope from my story. Nothing is permanent, and I hope my account can serve as testament to that.

After a minor concussion during a squash game December 2011, I was left feeling fairly miserable for a number of weeks. I was able to move my exams and write them at my convenience. I was a third year University student with diagnosed ADD but was otherwise completely healthy.

I recovered fully by January and thought nothing of the incident.

In late April 2012, my health started to rapidly decline.
At the time, I was studying in Sweden and had no conception of my access to the Swedish healthcare system.

I felt dizzy, confused, extremely sensitive to light, slightly depressed, and developed a low tolerance to alcohol. My short term memory all but faded.
I couldn't sleep and was constantly exhausted throughout the day.

I credited the symptoms to the constant Swedish sunlight, rising at 3am and setting at 11p, causing my minor insomnia.

I was confident that my homecoming to the States would cure me once I could sleep again.

I started a new job immediately upon returning from my Exchange program.

I didn't give myself enough time to recover from jetlag and started working roughly 8a-11p daily, and was sometimes assigned to be on-call at night.
My bizarre condition was seemingly improving, and I was able to put it in the back of my mind and vowed that normal sleep would cure me.

Upon finishing work in mid-July, I had time to catch up on months of lost sleep. I slept 12-14 hours a day, waking up feeling confused and "hazy". I remained constantly fatigued throughout the day.

Days felt as what I described as "choppy"; I couldn't remember what I had done earlier. Nothing seemed to phase me; the difference between good or bad didn't exist, things just "were".

I attempted to self cure by remaining active and busy throughout the day, but found myself left exhausted and unable to follow through with my daily plans. Psychologically, I was a wreck, wondering when, if ever, I would recover and constantly wanting my "normal" self back.

I constructed causal theories, allowing the mysterious illness to literally consume my thoughts and dictate my life.
I couldn't look at my friends, family, or strangers without considering that no one felt like I did.
I became disinterested in leaving the house and my once outgoing, outspoken, and energetic personality became bland and depressive.

My short term memory completely failed me; in my worst stages, I struggled to remember what I was thinking about a mere 30 seconds before. I suffered from a constant headache.
My brain became "hazy"; I went about my day passively, feeling like my actions were disconnected from my thoughts. I became miserable to be around, constantly complaining and making excuses to account for my bizarre condition.

I kept questioning what I did to deserve this and how this happened to someone with a normal medical history. I finally saw my family doctor in mid-August and was diagnosed with Mononucleosis. I believed this aptly explained the fatigue, but failed to give explanations for the mental symptoms. I felt positive about the diagnosis but slightly unresolved. The doctor said my symptoms would start to clear up in a matter of weeks, and that I would be fine for the start of classes in mid-September.

I returned to school hopeful, but found myself unable to lead my normal life. I started to see a counselor to address the condition as a mental health issue, but deep down knew that there was a physical cause. I was encouraged to separate "things I know to be true" from "things I think are true" in an attempt to approach the illness as the product of depression or anxiety.

I continued to feel the seemingly bizarre physical symptoms, but became anxious that my "new self" could not meet the social, educational, and extracurricular demands that I had once been able to manage with ease. My in-class focus was eliminated, I ate one pathetic meal per day, and had to build in time to lie down and rest. I was truly at my worst and was ready to drop out for the semester. Basic tasks became a burden. I accepted that I was depressed, but only because of the physical ailment, not because of external forces.

My friends offered support, but I created a block because I felt like no one could properly understand or relate to me. I failed to be self-sufficient to the point that I asked my mother to make the long drive to school to help me. I started vitamins to cure the mono, and initially felt better; however I knew that mono wasn't causing my ailment. An untimely breakup pushed me over the edge, and I started to lose all hope of recovery. I felt depressed, frustrated, and confused, as my mind continued to fail me. It truly takes feeling your worst to be able to recover.

I restarted my ADD medication after a 6 month haitus (my studies in Sweden required such little work that I could do them without having to use my medication). I started on a new medication and immediately felt better, like I had more energy. I felt positive, and indicated this to the mental health nurse I was seeing. When the medication wore off, the symptoms would return in full force, hitting me harder than before. I couldn't focus on my assignments and continued to avoid social obligations. I met weekly with both a physician and a mental health nurse. The mental health nurse pushed me to self-cure mentally, but I couldn't resolve my feelings towards an undiscovered physical symptom.

I continued to push for an MRI, and placed my hope on a physical ailment. I needed a tangible cause; nothing in my life was causing me to be depressed. Not once did the physician or mental health nurse consider the December concussion to be a cause. I was prescribed an anti-depressant to help me sleep, but found that it failed to both put me to sleep and keep me sleeping. I would wake up at 6, my brain still running.

After a minor epiphany with the mental health nurse at the end of September, I accepted my illness to be anxiety/depression and that it was perpetuated by my own negative thoughts. I was prepared to move forward with whatever treatment the mental health nurse suggested. Resolved, I determined that good, natural sleep and therapy would cure me. I turned my focus more towards schoolwork and my social life and attempted to make a recovery.

By mid-October, the helpless calls to my parents had subsided and my overall health started to ameliorate. My feelings of "if I was healthy..." also subsided, as I slowly accepted the hand I was dealt. I stopped seeing the mental health nurse and the physician. Still undiagnosed, I felt myself recovering week by week and was prepared to be patient. My thoughts of my illness turned into those of my recovery, my surroundings, and my studies. I met a girl and started to resume life as normal.

In mid-November, I was finally given an appointment to a neurologist (CDN healthcare involves long waits for specialty appointments). On Thanksgiving day, I saw him and was diagnosed with post-concussive syndrome. I had integrated my illness into my life, and receiving this diagnosis was a positive outcome. Recovery can and will occur, he comforted me. I felt relieved that this wasn't my fault, and most importantly wasn't a product of my mind.

I struggle to write this. Remembering the past 6 months is both difficult and emotionally draining. It pains me to consider how long I've been ill and how many opportunities and experiences have passed me by.

Today, I am not fully recovered. I still sleep poorly. I still have difficulties with memory, attention, and fatigue. Despite my unfortunate, unfair position, I have hope. Hope for recovery. Hope for understanding and health. Hope that someday I can be my old self again. Hope that doctors, friends, and family can understand our illness and provide it with the importance that it merits. Hope that people will never discount the brutally damaging effects of a head injury and not downplay the profoundly awful effect that it has on ones life.

As I recover, I continue to rediscover myself. I know that when this subsides, I will emerge a stronger, healthier person. And never again will I discount the importance of good health.

There is hope, friends. You're not alone in this battle. I, along with thousands of others, have been and still are fighting PCS. This is not your fault, and you can't control this. You didn't ask for this and unfortunately you can't make it go away instantly. But recovery is within your reach. Positive thought and distraction have served to be the best medicine.

Surround yourself with those that care about you and can get you through this. Understand that illness is temporary and you will again be yourself. I've managed to internalize this, but it wasn't without the help and support of my family and friends. Talk to someone; exist outside your thoughts and theories. Connect with others and understand that you're not alone. Internalize hope and believe in recovery.

Thank you for lending your ears. This is more important to me than you could ever grasp. Keep fighting, there is hope for recovery.

x
JNC

[Theta Z]

Thank you JNC for your experiences and encouragment shared here on the TBI-PCS threads.

Sincerely,

Theta

[Mark in Idaho]

JNC,

Welcome to NeuroTalk. Glad you found this place.

From your post, it appears you are a high achiever with high expectations of yourself. I say this because of your post including many fine details of your thoughts and experiences. It is good to see that you have such good memory skills.

It is very difficult to live with and manage PCS by focusing on the small details. Recovery and improvement is best done by noticing trends, not individual experiences. These trends are best viewed in time spans of weeks and months. Many good days last just that, days and are only momentary events. When they start lasting weeks, they can be expected to be a trend of improvement.

After your diagnosis of PCS, did they recommend quiet rest? I or others can explain more about quiet rest. The busy and active life you describe is counter to recovery. Have you returned to your ADD meds? Have you modified the food and substances you consume? Research suggests limiting alcohol to a single serving per day. Many of us use a vitamin and other supplement regimen to support our brain's efforts to recover.

Please feel free to tell us about the symptoms you are still experiencing and many here will have suggestions for moving forward with your PCS.

btw, Are you in Canada or the States? You mentioned returning to the States but then mention the CDN healthcare system.

My best to you.

[Mokey]

Thank you for reminding us about being hopeful. My super supportive sppise broke into tears at hearing 'hear comes the sun' today....it was hard to see how he has suffered throigh 15 months of my injury. Thanks, and all the best for continued recovery.




QUOTE=JNC3;934410]New to this website and thought I would tell my story. I've formatted it in a readable way, with short paragraphs.

This is an exhaustive account of my battle with what I now know to be PCS, but for months believed to be severe insomnia, depression, anxiety, and mononucleosis

My hopes in writing this is that someone out there can relate and draw a glimmer of hope from my story. Nothing is permanent, and I hope my account can serve as testament to that.

After a minor concussion during a squash game December 2011, I was left feeling fairly miserable for a number of weeks. I was able to move my exams and write them at my convenience. I was a third year University student with diagnosed ADD but was otherwise completely healthy.

I recovered fully by January and thought nothing of the incident.

In late April 2012, my health started to rapidly decline.
At the time, I was studying in Sweden and had no conception of my access to the Swedish healthcare system.

I felt dizzy, confused, extremely sensitive to light, slightly depressed, and developed a low tolerance to alcohol. My short term memory all but faded.
I couldn't sleep and was constantly exhausted throughout the day.

I credited the symptoms to the constant Swedish sunlight, rising at 3am and setting at 11p, causing my minor insomnia.

I was confident that my homecoming to the States would cure me once I could sleep again.

I started a new job immediately upon returning from my Exchange program.

I didn't give myself enough time to recover from jetlag and started working roughly 8a-11p daily, and was sometimes assigned to be on-call at night.
My bizarre condition was seemingly improving, and I was able to put it in the back of my mind and vowed that normal sleep would cure me.

Upon finishing work in mid-July, I had time to catch up on months of lost sleep. I slept 12-14 hours a day, waking up feeling confused and "hazy". I remained constantly fatigued throughout the day.

Days felt as what I described as "choppy"; I couldn't remember what I had done earlier. Nothing seemed to phase me; the difference between good or bad didn't exist, things just "were".

I attempted to self cure by remaining active and busy throughout the day, but found myself left exhausted and unable to follow through with my daily plans. Psychologically, I was a wreck, wondering when, if ever, I would recover and constantly wanting my "normal" self back.

I constructed causal theories, allowing the mysterious illness to literally consume my thoughts and dictate my life.
I couldn't look at my friends, family, or strangers without considering that no one felt like I did.
I became disinterested in leaving the house and my once outgoing, outspoken, and energetic personality became bland and depressive.

My short term memory completely failed me; in my worst stages, I struggled to remember what I was thinking about a mere 30 seconds before. I suffered from a constant headache.
My brain became "hazy"; I went about my day passively, feeling like my actions were disconnected from my thoughts. I became miserable to be around, constantly complaining and making excuses to account for my bizarre condition.

I kept questioning what I did to deserve this and how this happened to someone with a normal medical history. I finally saw my family doctor in mid-August and was diagnosed with Mononucleosis. I believed this aptly explained the fatigue, but failed to give explanations for the mental symptoms. I felt positive about the diagnosis but slightly unresolved. The doctor said my symptoms would start to clear up in a matter of weeks, and that I would be fine for the start of classes in mid-September.

I returned to school hopeful, but found myself unable to lead my normal life. I started to see a counselor to address the condition as a mental health issue, but deep down knew that there was a physical cause. I was encouraged to separate "things I know to be true" from "things I think are true" in an attempt to approach the illness as the product of depression or anxiety.

I continued to feel the seemingly bizarre physical symptoms, but became anxious that my "new self" could not meet the social, educational, and extracurricular demands that I had once been able to manage with ease. My in-class focus was eliminated, I ate one pathetic meal per day, and had to build in time to lie down and rest. I was truly at my worst and was ready to drop out for the semester. Basic tasks became a burden. I accepted that I was depressed, but only because of the physical ailment, not because of external forces.

My friends offered support, but I created a block because I felt like no one could properly understand or relate to me. I failed to be self-sufficient to the point that I asked my mother to make the long drive to school to help me. I started vitamins to cure the mono, and initially felt better; however I knew that mono wasn't causing my ailment. An untimely breakup pushed me over the edge, and I started to lose all hope of recovery. I felt depressed, frustrated, and confused, as my mind continued to fail me. It truly takes feeling your worst to be able to recover.

I restarted my ADD medication after a 6 month haitus (my studies in Sweden required such little work that I could do them without having to use my medication). I started on a new medication and immediately felt better, like I had more energy. I felt positive, and indicated this to the mental health nurse I was seeing. When the medication wore off, the symptoms would return in full force, hitting me harder than before. I couldn't focus on my assignments and continued to avoid social obligations. I met weekly with both a physician and a mental health nurse. The mental health nurse pushed me to self-cure mentally, but I couldn't resolve my feelings towards an undiscovered physical symptom.

I continued to push for an MRI, and placed my hope on a physical ailment. I needed a tangible cause; nothing in my life was causing me to be depressed. Not once did the physician or mental health nurse consider the December concussion to be a cause. I was prescribed an anti-depressant to help me sleep, but found that it failed to both put me to sleep and keep me sleeping. I would wake up at 6, my brain still running.

After a minor epiphany with the mental health nurse at the end of September, I accepted my illness to be anxiety/depression and that it was perpetuated by my own negative thoughts. I was prepared to move forward with whatever treatment the mental health nurse suggested. Resolved, I determined that good, natural sleep and therapy would cure me. I turned my focus more towards schoolwork and my social life and attempted to make a recovery.

By mid-October, the helpless calls to my parents had subsided and my overall health started to ameliorate. My feelings of "if I was healthy..." also subsided, as I slowly accepted the hand I was dealt. I stopped seeing the mental health nurse and the physician. Still undiagnosed, I felt myself recovering week by week and was prepared to be patient. My thoughts of my illness turned into those of my recovery, my surroundings, and my studies. I met a girl and started to resume life as normal.

In mid-November, I was finally given an appointment to a neurologist (CDN healthcare involves long waits for specialty appointments). On Thanksgiving day, I saw him and was diagnosed with post-concussive syndrome. I had integrated my illness into my life, and receiving this diagnosis was a positive outcome. Recovery can and will occur, he comforted me. I felt relieved that this wasn't my fault, and most importantly wasn't a product of my mind.

I struggle to write this. Remembering the past 6 months is both difficult and emotionally draining. It pains me to consider how long I've been ill and how many opportunities and experiences have passed me by.

Today, I am not fully recovered. I still sleep poorly. I still have difficulties with memory, attention, and fatigue. Despite my unfortunate, unfair position, I have hope. Hope for recovery. Hope for understanding and health. Hope that someday I can be my old self again. Hope that doctors, friends, and family can understand our illness and provide it with the importance that it merits. Hope that people will never discount the brutally damaging effects of a head injury and not downplay the profoundly awful effect that it has on ones life.

As I recover, I continue to rediscover myself. I know that when this subsides, I will emerge a stronger, healthier person. And never again will I discount the importance of good health.

There is hope, friends. You're not alone in this battle. I, along with thousands of others, have been and still are fighting PCS. This is not your fault, and you can't control this. You didn't ask for this and unfortunately you can't make it go away instantly. But recovery is within your reach. Positive thought and distraction have served to be the best medicine.

Surround yourself with those that care about you and can get you through this. Understand that illness is temporary and you will again be yourself. I've managed to internalize this, but it wasn't without the help and support of my family and friends. Talk to someone; exist outside your thoughts and theories. Connect with others and understand that you're not alone. Internalize hope and believe in recovery.

Thank you for lending your ears. This is more important to me than you could ever grasp. Keep fighting, there is hope for recovery.

x
JNC[/QUOTE]

[JNC3]

Originally Posted by Mark in Idaho

JNC,

Welcome to NeuroTalk. Glad you found this place.

From your post, it appears you are a high achiever with high expectations of yourself. I say this because of your post including many fine details of your thoughts and experiences. It is good to see that you have such good memory skills.

It is very difficult to live with and manage PCS by focusing on the small details. Recovery and improvement is best done by noticing trends, not individual experiences. These trends are best viewed in time spans of weeks and months. Many good days last just that, days and are only momentary events. When they start lasting weeks, they can be expected to be a trend of improvement.

After your diagnosis of PCS, did they recommend quiet rest? I or others can explain more about quiet rest. The busy and active life you describe is counter to recovery. Have you returned to your ADD meds? Have you modified the food and substances you consume? Research suggests limiting alcohol to a single serving per day. Many of us use a vitamin and other supplement regimen to support our brain's efforts to recover.

Please feel free to tell us about the symptoms you are still experiencing and many here will have suggestions for moving forward with your PCS.

btw, Are you in Canada or the States? You mentioned returning to the States but then mention the CDN healthcare system.

My best to you.

Mark in Idaho,

Thanks for your considerate reply.

I've always prided myself on an impressively acute memory, and was left devastated when PCS took it away. As I recover, it slowly returns to me. There is a price, however; it comes with the uncomfortable thought of the longevity of my illness.

Your words on recovery are truly inspiring. I've long believed that viewing recovery in weeks or months is more beneficial than day by day, as your words reinforce. It's comforting to know we agree on this.

My diagnosis of PCS occurred only last Thursday. The doctor recommended taking ibuprofen and small amounts of caffeine to alleviate headaches, but little beyond that. I try to rest in a dark room for 30-45min per day, but cannot allow my health to interfere with my final year of my degree and my extensive extracurriculars. I've learned to cope with PCS, pushing myself in times when I should exhibit recovery. I'm confident that 3 weeks of rest over winter break will help me significantly. I find that a good night's sleep is the best medicine, so I've shifted my bedtime from 2am last year to no later than 12am this year. I drink significantly less (no more than 5 drinks in a weekend), as I understand the negative impact that alcohol can have on the brain. As a student, it's difficult for me to make time to edit my diet appropriately, though I would be open to suggestions. As far as vitamins, I'm extremely curious to hear your thoughts and recommendations.

I have indeed restarted my ADD meds and found that my brain functions best between a half hour to 6 hours after consumption.

I still have difficulties sleeping, daytime fatigue, confusion, etc. All the same symptoms, on a less debilitating level.

I'm from the States but attend University in Canada.

Looking forward to your reply!

[Mark in Idaho]

JNC,

I doubt you will see much improvement from day to day or even week to week if you maintain a full load of studies and extracurricular activities. It does not mean that after you graduate you can't take the time for quiet rest and good nutrition etc. so your brain can try to heal.

If the ibuprofen is not taking care of your head aches, try full doses of aspirin and acetaminophen (Tylenol) together. They are safe to take together at 1000 mgs each up to 3 times per day. Try and see what happens if you avoid the caffeine. If the combination works, give your liver a break from the Tylenol at least one day a week. Same goes for ibuprofen.

Your weekend drinking and unwillingness to take the time to be disciplined with diet and such makes it difficult to offer real help. Recovering from Prolonged Concussion Symptoms is not a part time effort.

When you are ready to get serious about recovery, we are here to help.

My best to you.

[wakey]

A word of advice from a fellow over-achiever who is much farther along than you in both PCS and life. Several weeks of rest is not enough. You will not get better by pushing yourself. Your recovery is only partially in your hands, but the part that you control is important. Rest, properly scheduled activities, and diet are the best places to start. I'm not a fan of multivitamins, but many here are. You should try them if you like. Eating healthy--plenty of fruits and veggies--and scheduling your day appropriately are key.

My advice would be to see how you do for those few weeks but then please consider taking a semester off, and please consider talking with your doctor or other healthcare providers about planning a recovery. Right now, it seems like everything is important. But you are so young that taking time off now will not diminish your career or life at all. You may miss some good times in college--but, after all, how good can they be when you are dealing with this everyday.

You do not want to be taking tylenol and aspirin everyday of your life for the next 50 years.

Best to you.

[Mark in Idaho]

wakey,

Have you ever tried an extended time (3 months or more) of vitamin and other nutritional supplements while avoiding the toxins common in many diets? It is very difficult to get the extra amounts of B-12, folic acid, magnesium, and such from normal mass produced fruits and vegetables. The injured brain needs much more focused nutrition than a healthy brain.

[wakey]

I have taken multivitamins and vitamin B supplements for several months without noticing any results. I am open to new suggestions though.