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Hi,

I just found out about this group through a google search on post concussion syndrome and am looking for hope that my symptoms will resolve soon. It has been almost a year since I fell and hit my head and although I'm seeing some improvement, I'm wondering if my symptoms will ever completely resolve. What would really help me a lot is to hear some success stories from people who have recovered after having prolonged symptoms for several months or longer. Does anyone out there have any stories they can share?

My early symptoms of extreme fatigue, brain fog, tingling in my hands and feet, and a burning sensation on my skin (arms and feet) have gone away. However, I still suffer from a lack of energy and strength, feelings of irritability, eyes sensitive to light, and numbness in my hands each morning. I also have recurring dull headaches that correspond with the times when I'm having the worst symptoms. Also, I am not able to exercise on a regular basis like I did before the fall and usually have symptoms if I try to do too much.

I've also noticed that my symptoms seem to be induced when I sleep longer than normal. For example, on the weekends I sleep later and usually have headaches and a low energy level. Has anyone else noticed a variation in symptoms based on sleep patterns?

Because of these many symptoms, I have not been myself over the past year and have lost a lot of my joy in life. The longer this continues, the more I worry if they'll ever go away. If I can find other people who have recovered after a year, that will really help me stay positive. Anyone out there like that?

I appreciate any encouragement that you may be able to send my way! :)

Thanks for listening!

Don

Don,

Have you been seen by any doctors? It sounds like you may have an unresolved neck injury. Neck injuries are common in concussion patients.

A chiropractor or physical therapist may be able to help you.

Hi Don, welcome to NeuroTalk! :Wave-Hello: I don't have any advice but I'm glad you found us and I hope your symptoms will improve soon.

Hi Don and welcome to NT!

Knowing when, or if, one's PCS will resolve is the $64,000 question - and I wish I had an answer for you. The extent of recovery can be influenced by many factors including age, number of injuries, whether or not you lost conciousness, etc...

During the healing process, it's important not to do anything that might hinder your progress. Rest and good diet are essential. It's also important to stay away from alcohol. I have no doubt that members more knowledgeable than I will chime in with good advice on supplements and treatment options.

Understanding PCS is an important step in recovering from it. Some excellent sources for further reading include: the Brain Injury Association of America www.biausa.org; www.tbiguide.com and our own TBI forum here on NT http://neurotalk.psychcentral.com/forum92.html If reading gives you headaches, there are a number of excellent TBI videos on You Tube. (Who knew it wasn’t just idiots surfing on cars?)

People have made incredible recoveries from brain injury. For example, a woman who got a serious TBI from a fall in her teens is now a neurologist in Canada. Never give up!

Cheers

Hi Mark,

Yes, I've been seen by three neurologists and several other doctors and they can't find any problems. I thought it could be a neck injury as well, but the MRI showed everything is structurally fine. After I fell, I had a lot of neck pain for about 3 weeks.

I haven't been to a chiro since the fall because I was afraid it might make it worse. I had a neck injury from an auto accident several years ago, and had chiro treatments at that time. But, all I had back then was occasional soreness.

I was hoping to hear some PCS recovery stories, but I guess nobody out there has any to share. I saw a former NFL football player (Merril Hoge) on ESPN last week who said it took him more than two years to recover from PCS.

Thanks.

Don

Here's a link to a great brain injury (stroke) recovery story:
To read more, click on the link provided below; http://m.theglobeandmail.com/news/natio ... ice=mobile

Hi Hockey,

I tried the link, but I think part of it was chopped off, so I couldn't connect to the article.

Don

Hi Don
I' m Donna, and I wont ever be totally recovered. But it isn't because of
having just one PCS were not sure how many I've had.

I also have a balance and vertigo issue that makes my problems show at
times.

But my experiences with the PCS that were really severe are much better
now. One of the things that really helped me was physical therapy.

Donna

Hi,

Your story sounds all too familiar. Like you, I went to many different neurologists after my head injuries and they all couldn't understand what was wrong with me. And on top of that, they had no idea how to help me rehab my brain injury aside from pumping me full of useless medication.

It actually wasn't until I discovered neurofeedback that I started to get better. Nothing currently out there has shown as much effectiveness at resolving symptoms from a head injury as neurofeedback. It is usually done in a therapists or medical doctors office. Just google search "neurofeedback" and "your city/town" and you should be able to find a few in your area. Make sure they have experience treating head injuries. If there is someone in your area who does LENS neurofeedback or Z score training (or both) I would highly recommend going to them. Good luck.

Sorry to hear of your struggles, and can relate with a lot of your symptoms. I had a head injury almost 2.5 years ago and am still recovering. Like you, I have symptoms like bouts of dizziness, head pressure, sound sensitivity, altered vision, hot flashes at night, headaches (migraines early on) and extreme fatigue. I have noticed patterns over this time that helped me to develop some theories that I am testing out.
After 2 years I came to I wonder if my injury was maybe 80% neck and only 20% brain injury. I do not have problems with memory or executive decision making or things like that. I am no doctor, but have read a lot and wonder if this is my case:
The uppermost vertebrae in the neck are donut-shaped, and the brain stem actually goes down inside them. If these bones are even a little out of place, it pinches the brain stem. My cat scans showed up normal too, but usually they are not looking for this sort of thing at the hospital. Someone correct me if I am wrong, but the functions of the brain stem have to do with things like balance, sleep, seeing, hearing, migraines, etc. So, if the brain stem has pressure on it, it has a harder time with all these things, resulting in fatigue.
I went to a very good upper cervical chiropractor (who you go to makes all the difference - in my case it had to be an upper cervical specialist). He took x-rays that showed a misalignment of my atlas and C-2, the topmost vertebrae. He laid me on the adjusting table, and as he adjusted it, I could literally feel liquid draining down from my head, relieving the head pressure! That was wonderful, and a few days I felt a LOT better, with less symptoms.
The problem then was that anytime I got a little jolt of some kind, the bones would go out of place again. I mean like throwing a rock, or clapping my hands too hard. The vertebrae are held in place by tendons and muscles. These get loosened in the initial impact, and can take a long time to tighten again. So, the vertabrae would go out again, and all of my symptoms would come back. Then I would get another adjustment and feel good again. This cycle went on for months, gradually my atlas started to stay in place. Then the C2 started staying put. Pretty soon I was just dealing with muscular knots and tightness. I think that a good physical therapist would have been good for me, but my chiropractor kind of played that role, I guess.
After seeing this pattern of "neck in - feel great", "neck out - feel terrible", I decided to find exercises that would strengthen my upper neck to keep it in place. Swimming was the best for me (I have a post about this), so I pursued that for a month this summer, and had great results. By the end of this past summer, I was almost normal. No more plugging ear, no more migraines, a lot less head pressure, better sleeping, a lot less dizzyness, and the best was that I could take a few little jolts and not be bothered too much.
Then fall came, and it got too cold to swim. I went downhill again, and was susceptible to any little irritation of the neck. So, I went to the local YMCA and began swimming again, and started to feel really good again. In the last month, I have had multiple days in a row of feeling perfectly normal. Not just feeling OK, but feeling really good - lots of energy and I could somehow see beauty and joy in things again.
Today is a different story, as I bumped my head really hard the other day, and actually got a lump which broke the skin from the impact. So, I am back to chills, nausea, and dizzyness, and major fatigue. I saw the chiropractor today, and sure enough, I had whacked C2 out a little. The interesting thing was that when my head got hit so hard the other day, I had no ill effects till about 24 hours later, when my neck started to get cranky from it.
So, my theory is that if I get my neck strong enough, that I should be able to return to a normal active life of work and raising my family. I have not proven this yet, but have had some hopeful initial results. I hope to let you know in a few months how it is going. It is inconvenient for me to spend time in exercise, but I am willing to do it if it means that I can lead an otherwise normal life. I also recommend daily magnesium and B complex - they help me a lot. Avoid MSG.
Sorry to ramble on here, but hopefully it will be useful information for you. There seems to be no shortcut to healing, it is a long road with lots of ups and downs. I was constantly dizzy for a year and a half, and suddenly it cleared up. I think of it as a tide coming in which gradually rises, but goes in and out a lot. Progress in not measured in days and weeks, but months and years with PCS. I do not know that this is a success story, but might spark some hope for you.

Thanks Everwilde
 

Everwilde,

Thanks for posting this information. I have an appointment with a cervical specialist in January, and I wasn't sure if it would be worthwhile or not. I have really bad neck problems from my injuries since mine are all sports related. I would probably have a bad neck even if I would not have gotten all of the concussions I got. I have always speculated that I was cutting off blood to my brain, or something similar to that, because of my neck/head injury. Your post gives me reassurance to see the specialist. Thanks again.

Thanks for that info, mhr4. I am planning on trying the neurofeedback and am hoping that will help me deal with the symptoms on the bad days.

Just as you said, I have been encouraged to take useless medications and so far, I haven't found anything that really helps. In fact, the side effects are worse than any benefits they might have. If I'm going to feel lousy anyway, I'd rather not be any meds at all. But, I also have some good days free of symptoms to give me hope that I'm getting better. It's just taking a long time.

Hi Everwilde,

Thank you so much for your detailed post. Hearing your story does give me a lot of hope. You have a lot of the same symptoms as I do. I forgot to mention the dizziness that I've been having for the past two months. Sometimes, it feels like I'm walking on a ship that is moving. But, it seems to be decreasing slightly over the past month or two.

Also, I am taking daily magnesium, riboflavin, and feverfew to prevent the headaches and it seems to help. My doctor prescriped Topomax and I felt really spaced out and tired all the time so that's why I turned to the natural remedies as recommended by the NY Headache Center.

Like you, I have occasional "head pressure," sensitivity to light and noise, and days when I'm extremely fatigued. Those symptoms are improving, albeit very slowly. If you found that getting your C-2 and Atlas aligned through a chiro resolved a lot of these symptoms, it might help me as well. But, as you said, it makes a difference which chiro you see. Your theory about the brain stem and description of its various functions intrigues me. I've had neck problems for about 10 years now, so it is possible in my case. But, how do I find a good upper cervical chiropractor who really understands these issues?

Thanks again for your post.

Don

Donna,

I'm sorry you had to go through all those concussions, but am thankful that you are doing much better now. That is very encouraging to me!

Thanks.
Don

As a long time believer in chiropractic, I learned about Upper Cervical Chiropractic a few years back. I capitalize it because it is a very special subset of chiropractic. There are a few web sites that discuss this protocol.

http://www.nucca.org/

http://www.upper-cervical.com/

http://www.upcspine.com/

I have not tried upper cervical chiropractic yet because the start up costs can be high. They take some very specialized x-rays prior to treatment. My previous insurance did not cover chiropractic.

Now that I am on Medicare Advantage, maybe insurance will cover it.

A physical therapist may be able to do some simple neck manipulations, but they do not have the special training that chiropractors have. I have been seen by a very good physical therapist but her upper cervical skills were minor compared to a good chiropractor, let alone a upper cervical specialist. .

My insurance does not cover the upper cervical chiropractor either, but it has been well worth the investment for me. I think that the start-up costs were not that bad, something like $300 dollars. But each follow-up visit is $40+. I had so many odd mishaps that I ended up going back a lot and it ended up costing me quite a bit. I suppose that the average person could spend around $1500 and a few months of time to bring it around.

The procedure is pretty straightforward. They take a few specific x-rays that show the exact alignment of your neck. They lay you on a special table, enter in all the info, and a small metal rod precisely taps the bones into place. The first time I had it done, it was such a light tap, that I thought, "that won't do anything...". But, I sensed an immediate release in head pressure, and over the next days had a lot less fatigue and all the other symptoms started to clear up. Then he has you come back 2-3 times a week to check and make sure that things are in place, and to calm down any problem spots, sort-of like a physical therapist. If you lived anywhere near the Eau Claire, WI area, I would recommend him.

An interesting side-note to all of this relating to dizzyness. I have found that if my SCM muscles ( a protruding muscle from below your ear, and down the side of your neck) get tight, or my jaw muscles get tight from stress, chewing on beef jerky, or clenching my teeth from a headache, I will get dizzy. If I can apply pressure to the SCM or jaw muscles and clam them down, the dizzyness goes away. Why? The these muscles attach back into the upper neck area, and if they start to pull, they can create a pressure on the brainstem again. I have noticed a similar mechanism with my shoulder getting tight. Just another theory...

Thanks for those links, Mark. I'll see if I can find some specialists in my area who can see if I might have alignment problems. It definitely is something I need to explore.

If I'm being honest, its hard for me to trust doctors anymore. I've had so many of them give me bad information or try to run up a lot of unnecessary tests and fees. It can be a major challenge to find doctors who are compassionate and really listen to the patient. I had one neuro minimize my symptoms and actually suggest that they were psychosomatic, as if my worrying was the cause of the symptoms. His solution was to take xanax and stop worrying. Needless to say, I fired him.

Everwilde,

Now that you mention the link between your jaw muscles and feelings of dizzyness, I have also had problems with my left jaw over the past few years. Whenever I chew on something like licorice or beef jerky, it seems to pop out of place and it is very painful for a few moments after that happens. However, I have not experienced any dizzyness when that happens. Still, I probably need to have that checked out as well. What kind of dentist/doctor would I see for problems with my jaw?

In my case, the dizzyness seems to mainly happen when I'm at work. It usually comes on when I get up and walk around after sitting for prolonged periods of time. I rarely notice it at home. However, I never had this dizzyness before I had the concussion almost a year ago. It's very puzzling. :confused:

Is that what they call TMJ? I am not sure who is best to see for that condition. Every head injury is so unique in how it affects the person. If you can notice patterns of cause and effect, it will be your greatest help. For me, I think that the most of the dizziness subsided after a year and a half.

It might be TMJ, I don't know. I might have to see my dentist and have him take a look at it. In any case, the pain is very short-lived and there is no dizziness that results from it.

pcshealer,

Do you stare at a computer screen for long periods at work? Sometimes, maintaining the same neck position can cause muscle spasms that interfere with blood flow. There are some things you can do to alleviate positional or postural issues. You might look into some desk exercises.

Regarding the psychosomatic comment by your neuro, I got somatoform disorder entered into my medical record. It is the KISS OF DEATH. After that diagnosis or even off-hand comment, every doctor after will dismiss you.

I believe we need an avenue to legally protest a somatoform diagnosis.

Regarding the TMJ issue, dentists are a very expensive form of treatment. A good physical therapist who knows how to go in your mouth and release the spasming muscles will likely give you better relief. Been there, done that. Wasted hundreds of dollars. There are some physicians who know how to inject Botox into the jaw muscles to lessen the spasms that cause many of the problems.

Be careful about sleeping on that side of your face. Some people even sleep with a hand under their jaw. It causes problems. My wife used to sleep with her right hand under her right jaw. A maxilofacial surgeon could tell by how it effected her TMJ and muscles.

Hi Everwilde,

I'm happy to say I found an upper cervical chiropractor who thinks he can help me. He's in my insurance plan too! :)

I had my first treatment yesterday after a thorough exam and x-rays the day before. Just like you said, he took precise measurements of my head and did a few little taps with his instrument. I am feeling a little better and am hopeful that he will be able to solve the problems with headaches and dizziness.

Thanks again for this information.

Don