Post Concussion Syndrom
 

Hey guys,

Im having a rough time with my headaches, fatigue, and cloudiness with my post concussion syndrome. I have had multiple head injuries in my years of playing sports. Now i am having trouble getting to and through work. All I do now is sleep, relax, and eat bc thats all I can do and want to do. I am now trying neck therapy and new medicine from my neurologist. Its hard talk to people and having them understand what we are going through.

Any thoughts?
George

Hi George,

I just wrote a longer reply in the thread about brain fog. But I wanted to reply here about meds. I tried a lot of meds, most of which made me feel worse instead of better. I recently started a new med called low dose natrexone. I am at a very low dose but I do think it is starting to help a little. Hopefully it will help more! :)

My understanding of it is that it works by increasing levels of endorphins so that you have more energy etc. At high doses it's been used for heroin additiction and low doses for brain issues (MS etc), hiv, cancer etc.

Let me know if you'd like more info. What are you taking and is it helping?
-Hazzell

Yeah I havnt heard that medicine u are on but I am currently on Verapamil and another medicine but the name is to complicated to remember..go figure...uhm I have been on topamax and depakote mostly but those stopped working...quit my job this week and turning down another job....i just need to get better before i work.....im going to physical therapy 2 times a week for 4 weeks or so, so im jsut hoping this all works and works soon

Wow, an interesting 'way off the label' use of Naltrexone. Its value at low doses ( one low dose before bed) is to enhance the immune system by causing a short increase in dopamine and enkephalin. I can see how it might give very short term pain relief but am confused as to how it can effect PCS systems besides pain.

There would be a small mood enhancing from the endorphins which are also helpful for relaxation.

At present time, there is no drug approved for the treatment of PCS. Doctors often try to treat individual symptoms such as depression or anxiety or head ache.

Bud, Topamax and depakote are both for seizures. Are you being treated for seizures? Topamax is sometimes used for migraines, too.

What new meds has your neuro put you on? Have you done anything to improve your brain's nutrition? Omega 3's, B-6, B-12, folic acid, D3, anti-oxidants, etc? The injured brain is polluted with the byproducts of the injury and needs extra help and purging itself of these toxins before it can do much to recover/heal.

Your concussion history suggests that your brain has hit its critical mass of injury and will need serious nutritional and behavioral discipline to get better.

Your Verapamil is just a blood pressure medication likely prescribed to help lessen your head aches which are often due to blood pressure levels that the brain is not tolerant of. PCS can cause the body to mis-regulate blood pressure and be overly sensitive to even moderate levels of blood pressure.

Ask your neuro if you can take a couple baby aspirin before bed? It will thin your blood so that you will be less prone to morning head aches that result from early morning blood pressure increases.

Let us know how you are doing. There are plenty here who have lived with your symptoms.

My best to you.

Hi Bud and Mark,

Bud, I hope the PT helps. I was also on the meds you are taking even though I wasn't having active seizures. This was a long time ago and when I questioned the dr about it, he told me the meds would help to stabilize brain wave activity. I didn't find the meds helpful but apparently other people do.

I understand what you mean about needing to get better before working. I had been working for several years but this past spring the neurological symptoms and misalignments etc intensified to a point where I was unable to work. And since then I have been doing all sorts of rehab etc to decrease symptoms, correct the misalignements and build up my strength. I have found rehab to be helpful.

Mark, Low Dose Naltrexone has supposedly been extremely helpful with some people who have MS since it can reportedly strengthen the immune system, decrease pain, and increase energy. My doctor reccomended it to me and I asked him about how this medication relates to brain injury that is not caused by a disease. He had an answer that seemed to make sense at the time but I don't recall all of it now- I think the main point was that it could help increase my energy, decrease pain and brain fog because brain injuries can alter hormones and endorphins etc and LDN raises endorphins. So I thought it was worth a try.

I'd been taking the lowest of the low dose for a month and increased it over the weekend. The adjustment wiped me out for days, I'm still recovering. I had to go back to the lower dose. I appreciate what you wrote about blood pressure- a big problem I had with this medication was that it seemed to make my blood pressure drop and I was having all sorts of difficulties from this. I hope the med will be more helpful at the lower dose now that I'm not taking the other pain/sleep meds as much (which may have intensified the blood pressure problems.)

I find your posts to be very helpful- thank you!
-Hazzell

Hazzel,

From my research on Naltrexone, for it to increase endorphins, you should only take one small dose each day. It has a half-life of 4 hours. It is this momentary spike in blockage of opoid receptors that causes the increase in endorphin production for the rest of the day. If you continue to take it during the day, it sounds like the endorphin production is not increased.

You want the rebound effect of the Naltrexone leaving your system, not the actual Naltrexone in your blood effect.

Do you have a home blood pressure monitor? If you are taking a blood pressure reducing drug, you should be able to take your own blood pressure to see what is happening. If your blood pressure is not high to begin with, then the BP reducing meds are ill-advised. Low blood pressure can limit the blood flow to the brain, thus slowing recovery.

If he is concerned about your hormones, it would be better to get them tested and treated with bio-identical hormones. Progesterone is a neuro-protective and is available in a skin cream. I posted a link to a good source of hormone specialists. Womens International Pharmacy is a wealth of information to find a good hormone specialists.

I'm off to visit my grand kids for the long weekend. Home you all have a good weekend.

Hi Mark,

I hope you are having a great weekend with your grandkids!

Thanks for your suggestion. Yes, I'm actually taking bio-identical hormones from Women's International Pharmacy. Several hormones because, through symptoms and tests, it was clear that I was having significant problems with my adrenal system and other hormones. I use progesterone cream too.

Yes, defintely- the point of the low dose Naltrexone is to experience the benefits of the blockade and get the med out of my system relatively quickly. I take a low dose just at night. However, it's been interfering with my sleep which is a problem and so I'm extra tired the next day but yet it's also helping for some way but usually for just a small period of time in the morning. I was hoping a higher dose would be more helpful but until I can figure out how to manage the blood pressure and sleep issue, going up isn't going to be happening.

I have read a bit about people taking it in divided doses during the day or one dose in the morning. But it's unclear to me if it is as effective and if it is problematic to blocking the cascade during the day.

I do have a BP machine at home- somewhere or other- have to put new batteries in it, haven't used it for a while.

Have you found anything to be helpful with energy and sleep?
-Hazzell

I had a blast with my grandkids. One is 2 1/2 now so he is much more interactive. I had head aches for the first two days but Sunday was much better.

I struggled badly with fatigue and sleep for the first few years. I was still trying to follow my routine of breakfast and reading the paper. After reading the paper, I needed a nap. My wife finally got me to stop the newspaper subscription and things got a bit better.

Now, I have mornings where I wake up and am ready to take on the day. Other mornings, I have the same fatigue and need a nap after breakfast. I am convinced that my breathing during sleep is the cause of my fatigue.

I wish I had a successful tip to offer. My best solution is to take a nap when fatigued and then get back up and try to get going.

I know that naps are not possible for those who need to keep a job. When I was still working, I would push through the fatigue but then collapse later. Any chance to take micro-naps will help.

My best to you.

Hey there, I know how you feel. You are not alone. I had an auto accident the day OJ run the highway. And I had another bad one May 2010. This post concussive nightmare is just that. I don't sleep without horror upon waking. I have neuropothy and lots of pressure in my head. I thought things would settle down. But to no avail as of yet. Seems positional changes laying on left side vs. right side vs. standing affect my state of being??? Anyone feel that???

suddenly,

I have positional problems that manifest as breathing problems (sleep apnea). If I sleep flat on my back with my head only slightly tilted to the right, I go great. If my head falls/tilts to either side much more, I stop breathing and have stressful dreams. If I try to sleep on my side, I need to ball my pillow up so my neck stays straight. If not, stressful to nightmare dreams. My wife can predict how my morning will be by watching me sleep/breath.

Do you have access to a doctor who understands sleep apnea? Mine is central sleep apnea (CSA) meaning it is caused by the central nervous system. Obstructive (snoring) sleep apnea OSA) is far more common. Many doctors will dismiss you if they see no signs of OSA. Brain stem issues can cause CSA.

I suggest having someone observe you sleeping. If they see or hear you stop breathing, you will have a valid complaint for a sleep specialist. CSA is difficult to treat. I resolve mine by disciplined sleep position. There are breathing pacemakers that can cause the diaphragm to pull a breath. They are an expensive and drastic solution.

Have to have a reason to live!
 

Dear George,
I don't know about the drugs, but as far as dealing with the other stuff just day to day here is my advice.
Have a reason to continue with life, to get out of bed, to go to work, to live.

For me that is the only reason that I don't stay in bed watching TV and eating constantly. I know that I want an education (much as I have trouble seeing this on a day to day basis). I know I don't want to let my family and friends down and I especially don't want to worry them. I know that someday I might feel better and then I will have to live life and what kind of life that will be is determined by what I do now.

I get out of bed because if I don't do it one time then I don't know if I will ever be able to do it again.

I got 7 concussions within one year. During that year I tried not to do very much. I walked, but that was my only exercise. I studied but that was my only reading. I watched movies, but that was almost my only form of entertainment. But I did do these things so that now, when it has been 1 year since my last concussion, as I am still dealing with the pain and other symptoms of my concussions, I can live.

Every part of my life has changed. I have to do only low impact activities where there is a very low likelihood of me hitting my head. I have to get lots more sleep. I have to find ways to make myself focus more in class and when studying. I have had to learn how to function while being tired and with an intense headache and in florescent lit rooms and while being dizzy/nauseated.

This is a hard life, but if you have a reason to live for, a reason to get out of bed, that is how we can all make it and become better people because of PCS.

Good luck!
Margarite