I have had multiple concussions. The first diagnosed one was Feb. 2012 and then the two more recent ones were Sept. 2013 and Dec. 2013. I went on leave from my teaching job after the September one. My neurologist approved me to return to work Feb. 2014. I taught and attended meetings for only 2 days, and had to stop work again. The puzzling thing is that my condition 7 weeks after I stopped work is the worst it has ever been. I am homebound - in bed most of the day due to headaches whenever I walk or even talk. I take Gabapentin and Nortriptylene and Temazapam. Does anyone have any suggestions for what I can do at this point? I have become very weak from staying in bed all the time, although my feeling is that staying in bed is probably the best thing. Any ideas, experiences, or suggestions are welcomed. Thank you![/B][/B]

Joe,

Welcome to NeuroTalk. Sorry to hear you are struggling so.

I suggest you try to spend more time upright. You may need to give your brain a chance to regain blood flow control. Plus, bed is a lousy place for trying to maintain good neck and head posture. You need to get quiet rest meaning gentle activities in a quiet atmosphere. Playing solitaire with a deck of cards can be a good activity. It supports just enough blood flow to help your brain heal.

Other than head aches, what symptoms are you experiencing ?

Thanks for the quick response, Mark. I am trying to sit in a chair to listen to audio on headphones instead of lie in bed after your suggestion. I now have a deck of cards on hand too to try your solitaire suggestion. Your suggestions are the only practical ones I have received.

As far as my other symptoms, I am light and sound sensitive, and have memory problems. I cannot read or use the computer (my mother is typing my input for now and reading me what others are saying). This week has been the toughest in my two-year concussion history. Everything makes the headache worse - talking, thinking, walking the few steps from my bedroom to the kitchen.

Sorry you are going through this...

The same thing happened to me when I went back the first time... it was like I went back to the beginning... and it has taken me twice as long to get back to a place where I feel like I could entertain the idea of going back... I sleep in a recliner a lot... I take a nap everyday and sleep 3-5 nights a week in this chair... I would suggest a osteopath as well...

Sarah, what would the osteopath do?

Joe,

Osteopaths have a variety of skills beyond what an MD would do. They usually use Cranial Sacral Therapy techniques. CST is controversial. Some will try to manipulate your skull bones. Others will just work on your neck and spine. Some are grounded in medical science. Others can get very 'out there' in their beliefs (energy work, etc).

An MD specialist in Physical Medicine and Rehabilitation known as a Physiatrist may be helpful.

The biggest problem is that I cannot walk any distance at all. Since I tried to return to work 7 weeks ago, I have been unable to walk even a block, whereas in all my other recoveries I was able to build back up to walking longer and longer distances within 2 weeks Does anyone have any tips to building up tolerance and stamina for walking?

What Mark said... my DO does CST and works on my neck... small movements.

As for walking... I wish... I am in the same boat...

Hi Joe,

I'm very sorry to hear about your current struggles.

Does the LA in your handle mean Los Angeles?

I live in Los Angeles.

I was in a car accident on the 10 FWY heading through downtown from the West Side to get to work and the concussion I sustained in the accident caused me to be home-bound for over a year. That was the first diagnosed concussion I ever had.

I also became weak from 6 months of bed rest until my second neurologist ordered a spinal tap which relieved me of having a very severe, ongoing headache that required me to live in the dark with total quiet during that 6 month period of bed rest. Her thinking was that I had an increase of intracranial pressure that wasn't able to be seen on the MRI.

Have you had an MRI yet? Have you had a CT?

What is the diagnosis of the headaches? Do they think it's migraines? Post-Traumatic Headache? Tension Headache? Anything specific?

Is there a specific location where your headaches are located?

Eventually, I was diagnosed with pituitary dysfunction. (When the pituitary glad is being pressed upon, like by an increase of intracranial pressure, it is very painful and is usually felt behind the eye.) Now that I'm taking hormone replacements I am finally getting better.

Since you have a history of concussions, I recommend that you see an endocrinologist to get your hormone levels tested. This can be problematic because most endos are not experienced with pituitary dysfunction that is caused by a concussion. My endo is on the West Side - he does not take insurance, but if you have a PPO you can be reimbursed for the visit.

Some pituitary damage can cause headaches that are often misdiagnosed for a long period of time.

I agree with Mark that you need at least light exercise if you can tolerate it.

When I returned to work, I worked a 12 hour week and increased very slowly and gradually. I am still only working 35 hours a week but I intend to increase to 37 or 38 in the next couple of months.

Does your neurologist have a lot of experience with multiple concussions?

There is a great concussion specialist program going on at UCLA that you might want to look into.

You definitely need to rest as much as possible and whenever your symptoms become exacerbated.

You are very lucky to have your mom there to help you through this.

I colored pages some and read very simple, short articles. Coloring books are made with adults in mind.

There are also some "brain injury" work books that you might be interested in working with...

After I got a little bit better, I also started watching some light TV as I could tolerate it (after enjoying a 10 year reprieve from TV for a more active lifestyle) to help keep myself entertained.

Are headaches the only symptom you are experiencing that is keeping you from living a more normal life?

What kinds of symptoms are you having that is preventing you from walking?

Do you have brain fog inside the head or physical headaches outside the head? (I hope this question makes sense...) And how painful is it? Or is it just debilitating and uncomfortable?

EsthersDoll, thanks so much for your detailed response. I am sorry to hear of your struggle also.

I moved to LA - Culver City - from the East Coast last August for a new job and almost immediately became disabled due to a second concussion in Sept. and then a third in December.

I have Kaiser insurance and am in the process of transferring it to COBRA coverage since I am no longer working. I have tried to get an appt. at the UCLA TBI clinic, because I believe they are the experts in the area but it is very hard to get through their bureaucracy if you don't have PPO insurance. My mother said she would pay if necessary but that does not help in getting them to return our phone calls requesting an appt. I also have been approved for Medi-Cal, but they say it will take 90 days to get to the point where I can see UCLA doctors with it.

My Kaiser neurologist ordered a spinal tap but I was feeling so poorly on the day they scheduled it that I didn't go. If I knew what you just told me about how much it helped you, I would have gone and dealt with the resulting headache later. My neurologist said he did not see increased pressure when he looked into my eyes, so I thought the spinal tap was not really necessary. But maybe I was wrong, based on your experience.

I am seeing the Kaiser headache specialist April 7 and maybe I will get a diagnosis of the headaches from her. The headaches are across the front of my head. Not as low as the eyes.

I am also scheduled for an MRI next week. Not sure if that is necessary either since the last one after the 3rd concussion was normal and so was the EEG.

Can I ask who your endocrinologist is? It may save time to go to someone you recommend for our problem rather than trying to deal with the Kaiser doctors, who are more generalists. And my doctor is not familiar with multiple concussions - he is mystified by my symptoms.

The headache is my serious symptom. It is what is keeping me from walking and even talking. I have been unable to walk for 7 weeks, but the talking strict limitation is what got worse this week. I try to avoid any activity that gives me a headache and right now, that is almost everything. The pain is about 7/10.

Thanks again for all your good advice. Joe