[RainMan44]

Hello all. I'm a 20 year old male, new to this forum. I'm in desperate need of help, my PCS plus family trouble is just making my life a living hell. I don't know what to do, nobody has my back. Everybody I try to talk to thinks I am a hypochondriac and/or I am making this up, so I have come here with one last attempt to recapture how life used to be.

Anyway, here is my story.

On May 25, 2013 I was over at a friend's house spending the night. We had drank a couple hours beforehand. It was around 1:30 AM when I began to feel a bit dizzy, so I got up to splash some water on my face. As soon as I took a couple steps, I blacked out. My friend who saw me fall, said that my whole body just gave out and I slammed the back of my head on the rock hard marble floor. He told me my eyes rolled into the back of my head, and that it was the hardest hit to the head he's ever seen, and he was certain I was dead or something.

Now here's where it get's tricky. I woke up immediately after, I was not knocked out by the head trauma, but rather before it. I got up feeling fine, no nausea, headaches or anything. Just very bad pain in the front of the neck, very sore. I couldn't lift my head up when I was lying down, or really move it side to side. It was obvious at that point I had whiplash, which makes sense since I hit the back of my head.

Weeks went by without any symptoms. Then suddenly one day I got these very sharp headaches, I started crying for no reason. Life just felt very, very dark. Like I was all alone, almost in a dreamlike state. I began having twitches, jerks, spasms or w/e you call it in my head/neck, my arms, my legs, etc. Constant dizziness, feeling of heat all throughout my body. FEELING IN HEAD THAT ISN'T HEADACHE, BUT MORE LIKE PRESSURE. Like something is pushing my skull down. Balance issues, I walk very weird. I can't even play basketball anymore that well, something I did my whole life. My coordination is off.

But my biggest problem, WHICH I CANNOT PUT INTO WORDS, is with my vision. I just have no clue what the hell is wrong with it, but god is it screwed. My vision is a mess. 24/7 black spots/webs, fuzzy grainy vision, and what I look at doesn't even make sense. Life just doesn't look the same anymore. If I stare at something in particular, at some point the image begins to split. Or everything in my visual field begins to mix up together. Whatever I am focusing on just does not look right. It's like the middle of my vision is not the middle anymore. Like what I am looking at is not one image, it's not coming together correctly. I know this sounds crazy to you guys, but this is the best I can explain it. Also I can't look at stuff for too long, for example I'm having a convo with my friends and can't look them in the face while I we're speaking, I have to keep looking away because my eyes start hurting. Everything I look at feels like it is zoned out. Like everything just gets blurry. I can't see fine details.

It's so frustrating having this, it drives me insane. Gives me suicidal thoughts. I can't keep living this way, and if these problems are permanent, I don't know if I will continue with this life. I'm getting emotional just typing this out. This isn't me, this isn't supposed to be the way life was.


So here is my main question(s)

1) What should I do? Where do I begin? Neurologist? Neuro-Ophthalmologist? I'm just lost.

2) I found out I have upper cervical misalignments. My c1/c2 and c4 I think are misaligned, I went to the chiro and we came up with a 25+ session rehab plan. Two sessions in, two adjustments in...I feel a difference right after adjustment, but it does not hold and eventually the sense of doom returns...does this particular treatment take time? As in over time it gets stronger and stronger? And is it possible that this is the root of all my problems and I don't have PCS?

3) I am trying to get to the bottom of this, and I want to know what else should I check for? Intracranial pressure, CSF leak, neck aneurysm, skull fracture? Can you guys help me make a list of complications from concussion that I can check up on, please.

4) Why the hell is my head moving by itself? It's almost like a spasm, it'll make a "okay" nod, and I can hear all these clicking sounds in the back of my head when that happens. It's so unbearable, and annoying. Everytime I turn my head these pops and grinds and crunching sounds are in my head and neck. What do I do for this?

5) And does this feeling of being in a hazy/dreamy state ever go away? Just doing things like interacting with people doesn't feel the same anymore.

6) Just any extra tips/advice/pointers is greatly appreciated. Please help me get my life back.

Thank you so much to everyone who read this, and God Bless.

[anneo59]

Hang in there, and don't despair, I know it's easier said than done. Please continue reaching out and seeking available medical help. Feel free to contact me. I wish I had more answers for you, but i do care. I think there are people on this board far knowledgeable than I who may be able to help. Warm wishes and joy and strength, Anneo59

[Jomar]

Give the c1 c2 adjusting more time.
Does chiro do other adjusting or soft tissue work along with the upper cervical work?
You could be having some neck muscle spasms or tightness that is pulling things back out of alignment so some ultrasound, massage, low level laser might be helpful also.

Eat healthy rest and try to de stress as best you can.
I know it is hard when your young , but be patient, some times these injuries just take time..

The fall may have also aggravated an old sport injury that you never really noticed before..

[Mokey]

Sorry to hear about that!!! You need to see a good neuro opthamologist immediately and a doctor who knows about brain injury. I went through what you are facing and it is hell. Rest and get assessed!
Hang in there.

[Consider]

I want to give you hope because its out there and trust me, I have been in your position you are in right now. Please please take care of yourself. Being in the 20s with a brain injury is stressful. If you are feeling suicidal, call 911 or go to the local emergency room. Depression and anxiety are very common in brain injuries. I had severe anxiety during mine. It is uncomfortable and all the other symptoms just add to the depression and anxiety. Brain fog isn't nice either. But there is hope.

To help with vision problems, a neuro eye doctor will help. Neurologist can also help diagnose PCS and help help treat its symptoms to make you feel more comfortable. Psychotherapy is also helpful as it relieves depression and stress on the brain.

There is also a sticky on the vitamin thread, read it. The vitamins do help. I still take my regimen.

I want you to know you are not alone. This is an invisible illness and not many people will understand and it's scary. I am a 23 year old female who had PCS and recovered. It didn't happen overnight though. It took patience and discipline. No screen time for more than 30 mins and rest was a must. Light diet (as I had nausea). What ended up making me better, was after relieving the stress. Stress makes a huge difference in recovery. You need take the load of stress off. Do what you need to do. Please

Originally Posted by RainMan44

Hello all. I'm a 20 year old male, new to this forum. I'm in desperate need of help, my PCS plus family trouble is just making my life a living hell. I don't know what to do, nobody has my back. Everybody I try to talk to thinks I am a hypochondriac and/or I am making this up, so I have come here with one last attempt to recapture how life used to be.

Anyway, here is my story.

On May 25, 2013 I was over at a friend's house spending the night. We had drank a couple hours beforehand. It was around 1:30 AM when I began to feel a bit dizzy, so I got up to splash some water on my face. As soon as I took a couple steps, I blacked out. My friend who saw me fall, said that my whole body just gave out and I slammed the back of my head on the rock hard marble floor. He told me my eyes rolled into the back of my head, and that it was the hardest hit to the head he's ever seen, and he was certain I was dead or something.

Now here's where it get's tricky. I woke up immediately after, I was not knocked out by the head trauma, but rather before it. I got up feeling fine, no nausea, headaches or anything. Just very bad pain in the front of the neck, very sore. I couldn't lift my head up when I was lying down, or really move it side to side. It was obvious at that point I had whiplash, which makes sense since I hit the back of my head.

Weeks went by without any symptoms. Then suddenly one day I got these very sharp headaches, I started crying for no reason. Life just felt very, very dark. Like I was all alone, almost in a dreamlike state. I began having twitches, jerks, spasms or w/e you call it in my head/neck, my arms, my legs, etc. Constant dizziness, feeling of heat all throughout my body. FEELING IN HEAD THAT ISN'T HEADACHE, BUT MORE LIKE PRESSURE. Like something is pushing my skull down. Balance issues, I walk very weird. I can't even play basketball anymore that well, something I did my whole life. My coordination is off.

But my biggest problem, WHICH I CANNOT PUT INTO WORDS, is with my vision. I just have no clue what the hell is wrong with it, but god is it screwed. My vision is a mess. 24/7 black spots/webs, fuzzy grainy vision, and what I look at doesn't even make sense. Life just doesn't look the same anymore. If I stare at something in particular, at some point the image begins to split. Or everything in my visual field begins to mix up together. Whatever I am focusing on just does not look right. It's like the middle of my vision is not the middle anymore. Like what I am looking at is not one image, it's not coming together correctly. I know this sounds crazy to you guys, but this is the best I can explain it. Also I can't look at stuff for too long, for example I'm having a convo with my friends and can't look them in the face while I we're speaking, I have to keep looking away because my eyes start hurting. Everything I look at feels like it is zoned out. Like everything just gets blurry. I can't see fine details.

It's so frustrating having this, it drives me insane. Gives me suicidal thoughts. I can't keep living this way, and if these problems are permanent, I don't know if I will continue with this life. I'm getting emotional just typing this out. This isn't me, this isn't supposed to be the way life was.


So here is my main question(s)

1) What should I do? Where do I begin? Neurologist? Neuro-Ophthalmologist? I'm just lost.

2) I found out I have upper cervical misalignments. My c1/c2 and c4 I think are misaligned, I went to the chiro and we came up with a 25+ session rehab plan. Two sessions in, two adjustments in...I feel a difference right after adjustment, but it does not hold and eventually the sense of doom returns...does this particular treatment take time? As in over time it gets stronger and stronger? And is it possible that this is the root of all my problems and I don't have PCS?

3) I am trying to get to the bottom of this, and I want to know what else should I check for? Intracranial pressure, CSF leak, neck aneurysm, skull fracture? Can you guys help me make a list of complications from concussion that I can check up on, please.

4) Why the hell is my head moving by itself? It's almost like a spasm, it'll make a "okay" nod, and I can hear all these clicking sounds in the back of my head when that happens. It's so unbearable, and annoying. Everytime I turn my head these pops and grinds and crunching sounds are in my head and neck. What do I do for this?

5) And does this feeling of being in a hazy/dreamy state ever go away? Just doing things like interacting with people doesn't feel the same anymore.

6) Just any extra tips/advice/pointers is greatly appreciated. Please help me get my life back.

Thank you so much to everyone who read this, and God Bless.

[Concussed Scientist]

Hi Rainman,

Well, you totally screwed up in your drinking but you were kind of unlucky in where you landed. Here are my thoughts.

You have multiple problems so one thing is not going to fix all of them. The neck issues are probably real and having that sorted out is a start but I don't think that it will do anything for some of the other issues, your vision for instance.

You have sustained what would be classified as a "minor" brain injury. The fact that it is called minor is based merely on the length of time that you were unconscious. It can still give you awful symptoms. I have sustained something similar. Incidentally, my current symptoms do not include vision problems. However, I did have a concussion as a child and had a weird sort of vision thing happen. Your description of the vision weirdness does sound familiar to me. My problems went away. I was seven. I think that the younger you are the better chances you have of making a complete recovery. Now I am in my fifties and I do not expect to make a complete recovery from my most recent concussion. I will just have to live with it and learn to cope with residual symptoms. However, you are only 20 and you had the concussion only a few months ago. There is still plenty of time for you to make a good recovery. If you do please come on this forum and tell us all that you have got better. It is nice for us to hear when that happens to someone.

Many people using this forum have sustained similar injuries. There is a lot of information available for you to read about other people's experiences and how they cope. The stickies would be a good place to start. As for what you should do:

1. Immediately give up doing anything that is making your condition worse. You have got to make sure that you don't bump your head again or that will make any recovery take a lot longer and it is bad enough as it is. So, definitely don't get into a situation e.g. through drinking, that will put you at risk of bumping your head again. Probably you should give up drinking altogether for the time being. Also, basketball involves jerking your head to some extent so I wouldn't be doing that for now either. Maybe when you have recovered a bit.

2. Find yourself a good neurologist, that means a specialist in mTBI/PCS headaches or vision. If you go to see a general neurologist the chances are that they will not be very good at treating concussions and not know much about it. However, even a general neurologist should check for life threatening problems such as pressure on the brain. My guess is that you don't have these issues or your would be dead by now, but perhaps a qualified doctor should check. Do some research on specialist neurologists in your area. It isn't easy to find a good one. Be prepared to go once to a few of them and don't return if it seems that they don't understand your specific problems and aren't going to test you or give you any treatment. Most neurologists will just hope that the problem goes away and, to be fair, it does in the majority of cases within a year. However, if you are not one of the luck majority then you will need some sort of treatment. There are various drugs that might help, pregabalin, gabapentin, amitriptyline, topiramate. You could look these up and see what results fellow sufferers have had with them.

3. You will probably need other treatments. The neck stuff sounds good. I tried it for a C2/3 prolapsed disc but I didn't feel that it helped a great deal in the end. However, I was taught some manipulation that I could do at home. I did it twice a day. Ask your chiro if there is anything that you can do at home that might help to keep the vertibrae in place. I found that they slipped back out of position from one week to the next.

4. Rest is good. You mentioned family troubles, but if you can find family members or friends who can give you a hand to research things and help to organise things then this would take some of the stress off you and give you time to rest. Rest is probably the most important thing that you can do for yourself right now. However, it is hard. The fact that you have your eyes open means that that part of the brain is working, but you could at least avoid the things that you think are giving your brain problems and try to do less of that. If in doubt about an activity, just don't do it.

5. You need to feed yourself well. Make sure that you are having enough protein in your diet for the first year and take note of lots of advice about vitamins, omega3 fatty acids etc. that you will find on this site.

6. Some people with vision issues swear by using specialist eyewear. I don't have that problem so I'm not the best person to ask but I think that blue-tinted glasses are sometime helpful for vision problems. Find out about that.

7. Try writing down your symptoms etc. on a particular day or days and then compare a month later, three months later, a year later. That way you will get some indication that you are going in the right direction and that will give you some hope. I found that even when it seemed like I was making no progress at all, I could still notice that I was better than I was at the same time the previous year.

8. There are other treatments that you can try such as HBOT, but in the first instance: avoid things that could make you worse, rest, eat well, get your sleep, find a specialist neurologist, try the glasses, and be patient because recovery can be slow and might not be complete, but hopefully things will be better than they are now. It's tough.

Good luck with your recovery.
Concussed Scientist

Originally Posted by RainMan44

Hello all. I'm a 20 year old male, new to this forum. I'm in desperate need of help, my PCS plus family trouble is just making my life a living hell. I don't know what to do, nobody has my back. Everybody I try to talk to thinks I am a hypochondriac and/or I am making this up, so I have come here with one last attempt to recapture how life used to be.

Anyway, here is my story.

On May 25, 2013 I was over at a friend's house spending the night. We had drank a couple hours beforehand. It was around 1:30 AM when I began to feel a bit dizzy, so I got up to splash some water on my face. As soon as I took a couple steps, I blacked out. My friend who saw me fall, said that my whole body just gave out and I slammed the back of my head on the rock hard marble floor. He told me my eyes rolled into the back of my head, and that it was the hardest hit to the head he's ever seen, and he was certain I was dead or something.

Now here's where it get's tricky. I woke up immediately after, I was not knocked out by the head trauma, but rather before it. I got up feeling fine, no nausea, headaches or anything. Just very bad pain in the front of the neck, very sore. I couldn't lift my head up when I was lying down, or really move it side to side. It was obvious at that point I had whiplash, which makes sense since I hit the back of my head.

Weeks went by without any symptoms. Then suddenly one day I got these very sharp headaches, I started crying for no reason. Life just felt very, very dark. Like I was all alone, almost in a dreamlike state. I began having twitches, jerks, spasms or w/e you call it in my head/neck, my arms, my legs, etc. Constant dizziness, feeling of heat all throughout my body. FEELING IN HEAD THAT ISN'T HEADACHE, BUT MORE LIKE PRESSURE. Like something is pushing my skull down. Balance issues, I walk very weird. I can't even play basketball anymore that well, something I did my whole life. My coordination is off.

But my biggest problem, WHICH I CANNOT PUT INTO WORDS, is with my vision. I just have no clue what the hell is wrong with it, but god is it screwed. My vision is a mess. 24/7 black spots/webs, fuzzy grainy vision, and what I look at doesn't even make sense. Life just doesn't look the same anymore. If I stare at something in particular, at some point the image begins to split. Or everything in my visual field begins to mix up together. Whatever I am focusing on just does not look right. It's like the middle of my vision is not the middle anymore. Like what I am looking at is not one image, it's not coming together correctly. I know this sounds crazy to you guys, but this is the best I can explain it. Also I can't look at stuff for too long, for example I'm having a convo with my friends and can't look them in the face while I we're speaking, I have to keep looking away because my eyes start hurting. Everything I look at feels like it is zoned out. Like everything just gets blurry. I can't see fine details.

It's so frustrating having this, it drives me insane. Gives me suicidal thoughts. I can't keep living this way, and if these problems are permanent, I don't know if I will continue with this life. I'm getting emotional just typing this out. This isn't me, this isn't supposed to be the way life was.


So here is my main question(s)

1) What should I do? Where do I begin? Neurologist? Neuro-Ophthalmologist? I'm just lost.

2) I found out I have upper cervical misalignments. My c1/c2 and c4 I think are misaligned, I went to the chiro and we came up with a 25+ session rehab plan. Two sessions in, two adjustments in...I feel a difference right after adjustment, but it does not hold and eventually the sense of doom returns...does this particular treatment take time? As in over time it gets stronger and stronger? And is it possible that this is the root of all my problems and I don't have PCS?

3) I am trying to get to the bottom of this, and I want to know what else should I check for? Intracranial pressure, CSF leak, neck aneurysm, skull fracture? Can you guys help me make a list of complications from concussion that I can check up on, please.

4) Why the hell is my head moving by itself? It's almost like a spasm, it'll make a "okay" nod, and I can hear all these clicking sounds in the back of my head when that happens. It's so unbearable, and annoying. Everytime I turn my head these pops and grinds and crunching sounds are in my head and neck. What do I do for this?

5) And does this feeling of being in a hazy/dreamy state ever go away? Just doing things like interacting with people doesn't feel the same anymore.

6) Just any extra tips/advice/pointers is greatly appreciated. Please help me get my life back.

Thank you so much to everyone who read this, and God Bless.

[Concussed Scientist]

I forgot your balance issues. For this you need to see an otologist. However, I would suggest trying to get the other stuff sorted out a bit first. An otologist is liable to give you advice like being more active to challenge your balance and give you exercises that might be the opposite to other recommendations, like resting. It sounds as though the balance is not your main problem so perhaps you need to recover a bit before tackling that. The brain does adapt to messed up balance to some extent. I found that my walking was messed up. For four years it seemed as though I could not walk in a straight line. However, after four years the brain seems to have adapted and now it seems that I do walk in a straight line. Four years is a long wait, I know. CS

[brokenbrilliant]

Sorry to hear you are going through all this. One of the things that completely messes me up -- even after almost 10 years -- is being in a constant state of flight-flight. Adrenaline running all the time fries my system. It makes me dizzy, it fogs my head, it heightens all my light and sound and touch sensitivities, and it literally makes me ill. I have found a lot of relief in relaxation techniques as well as controlled breathing exercises which regulate my heart rate and also get me out of fight-flight mode -- which I was in, for years before I realized what was up with me.

Above all, don't quit. You have plenty of years ahead of you -- and a lot of good years, at that. This takes time. The main thing is to relax, learn to find the humor in things, and learn how to manage your symptoms.

For me, they never go away 100%, but they are very manageable -- and they also keep me honest. They make it very clear, when I am overdoing it, and I need to take a break.

It took me a while to learn how to manage, but I'm on the good foot now. Take care of yourself and be your own best friend. And don't take it personally when people don't understand your symptoms and experience.

Very few people do, unless they've been there, themself.

Stay strong.

[tamisue]

RainMan-

Rest, rest, and more rest. Can't speak to all problems but the neuro eye dr is hopefully going to be a good place to start. 2 yrs after my accident finally got with a good neuro who referred me. New glasses-huge difference in my life.
Good luck!