Hi Joe,

Funny enough, I lived in Culver City when I was in that auto accident. I miss living there. I had to move closer to work because I can't drive or travel like I used to be able to - but at least I'm working now.

My endocrinologist is VERY good. His name is Dr. Theodore C. Friedman He has his MD and a PHD and he teaches medicine at UCLA.

But he is primarily a researcher, so he only takes cash (checks and debit cards) and he only sees patients on night a week.

Here is his webpage: http://goodhormonehealth.com/

I did not see him until one year ago, which was more than 2.5 years after the accident I was in.

He will probably want you to get the spinal tap done ASAP. Even though I had a spinal tap that relieved the pressure I had two years before I met him he still wanted me to get another one.

The spinal tap order should have written on it that your intracranial pressure is to be measured. It's very important.

The problem with an increase of intracranial pressure is that it isn't always seen or present despite having an increase of intracranial pressure. I took this passage from a website that I am going to include the link to below.

I didn't show any papilledema.

"Is it possible to have IH without papilledema?

While many physicians believe papilledema must be present in order to confirm an IH diagnosis, others argue that papilledema does not always have to be present. In some instances, a patient with intracranial hypertension may not show papilledema because of a time lag between the initial rise in cerebrospinal fluid (CSF) pressure and the development of papilledema. Therefore, at the time of diagnosis, papilledema is not seen.

Another theory is that the actual increase in CSF pressure may produce headache but is not high enough to produce papilledema.

Anatomy may also play a role. Variations in the micro-anatomy of the optic nerve can restrict CSF and prevent it from entering the optic nerve’s subarachnoid space. Or CSF pressure may be directed to a point of lesser resistance, such as the sella turcica (pituitary gland fossa) which then produces the appearance of an empty sella on imaging studies.

Other evidence of intracranial hypertension without papilledema is found in the fact that it’s possible to have asymmetric papilledema, in which the optic nerve swelling is either worse in one eye or only develops in one eye, rather than both."

Here is the link:

http://www.ihrfoundation.org/intracr...sion/info/C140

You can find a lot more information about other symptoms and details about increased intracranial pressure on that website that might help you out a little bit. You *may* be experiencing some symptoms that you aren't even able to pin point - that has happened to me quite a bit over the last few years.

You may or may not have an increase of intracranial pressure.

And you may or may not have an hormone/endocrine deficiency or problem.

If you see Dr. Friedman, he will cost more than just the amount of the first visit. He is very thorough and I highly recommend him. I saw three other endocrinologists who wouldn't even order the tests to be done for me to get a diagnosis (one of whom is a prominent endo who teaches at USC) because they just weren't informed enough about the damage a concussion can do to the pituitary gland/pituitary stalk or hypothalamus. They were insulted that I brought in the research to prove that it's an under diagnosed and misdiagnosed problem - Dr. Friedman quoted the research (right down to the levels considered to be necessary to have further testing conducted after mTBI and everything) and I didn't even take it out of the folder I brought it in.

Dr. Friedman will probably want you to have a very special MRI done on a very detailed machine called a T3. There are only 2 in the area, one is in Torrance and the other is at Cedars. Going to Cedars is more expensive but they have better radiologists there who can read them better.

He will sit with you for an entire hour to discuss the problems that you have during your first appointment.

You may end up spending a lot of money for testing that doesn't indicate or prove that you have a hormone deficiency.

My thinking was, if I didn't have any hormonal deficiencies (but I had done my research and I was pretty sure that was what was wrong with me) then I would move on and try something else. I have been very determined to get better.

Luckily for me, it seems that my journey to recover lead me to know that I need hormone replacement treatments in order to get better and in order to function and I didn't have to try other things.

I am so sorry to hear that you have such severe headaches. Even though your headaches are awful, please post your other symptoms if you get the chance because it might help someone figure out another possible solution for you.

You may also want to get an MRI of your neck, but I'm not exactly sure how you got your concussions. Sometimes nerve issues cause pain because the neck was injured and an MRI might show that.

Please feel free to PM me or keep replying in this thread and I'll reply as I am able.

Hi Joe

I too am a teacher, but have made it back to work full time. I don't run a big classroom anymore though, but I still get to have a small one and work with others.

For some brain resting activities you can try

listening to gentle music
audio books
planting something simple in dirt
run your hand through dirt
fold clothes or fold things -- paper

Hang in there. This site has helped me sooooo much and I hope it helps you too.

Sincerely

pm

I had several basketball injuries during the ages of 18-22 but I did not think they were concussions at the time. The serious basketball injury was 2 years ago, and I was still recovering from it when I took this job last August and moved to LA. The second one came when I hit my head on a door frame. I was recovering from that pretty well when I was in a car accident in December. I also seemed to be recovering from that concussion and had started to read, watch TV, use the computer, and socialize. But when I went back to work in February is what brought me to this current relapse. The mysterious thing is that this most serious relapse was not from another concussion, but just from over-stimulating my brain. I only taught for 2 days and had to go on total medical leave. That was 7 weeks ago and I have made no progress. In fact, this week, for some reason, I am the worst I have ever been.

I have one more question for you, EsthersDoll. If the hormone replacement had not worked for you, what would you have tried next?

And one more question for anyone: My doctor has prescribed a 9-day course of prednisone, which I am very scared to try because it is supposed to cause sleeplessness and anxiety. I have struggled with both those things but now seem to have both in better control. I would hate to go backwards and have those symptoms again.

Joe,

I have the same problem with not being able to walk. Over the months it has gotten better. I did vestibular therapy that got me stable enough to walk with out someone at my side, but I still have no endurance.

I try to at least pace length of the house here and there to get movement in. I live on a hill and around the block there is no where I could just stop sit and rest except in the middle of the sidewalk. I will sometimes go to the store with my husband and walk holding the buggy for dear life, but it is still walking and we go to stores that are not busy or too large and they do not play music, also I can go to the car if needed. Car rides are bad though so that is a hit and miss thing.

I listen to audio books quietly to pass the time while resting in a nice dark room. Many libraries have electronic downloads available if you are a member.

I also have bad headaches, but I have eye and ear involvement with my concussion.

Best of luck to you, I hope you get in to the clinic quickly!

Hi Joe,

My neurologist also ordered me to take Prednisone in that fist 6 month period before I had the spinal tap. I was too messed up to notice any negative effects from taking it.

I think you might just want to go for it though, it helps to reduce any inflammation that might exist.

Also, I want to mention that before you see Dr. Friedman that you might just ask your PCP for a hormone panel with the following hormones.

» 0800 Cortisol levels (<12 mcg/dl, recommend follow up)
» IGF — 1 Insulin–like Growth Factor (anything less than 200 ng/ml needs stimulation testing, people after sustaining mtbi can have "normal" IGF-1 levels and still be growth hormone deficient)
» TSH — Thyroid Stimulating Hormone (anything above 3.0 mIU/L or below .3 mIU/L may be "subclinical" and should be investigated further or treated)
» FT4 — Free Thyroxine
» LH — Luteinizing Hormone
» Testosterone (males only)
» FSH — Follicle Stimulating Hormone
» Estradiol (females only)

You should also test for:

TPO - Thyroid Antibodies
Vitamin D
Vitamin B12
Iron

The opinions from Dr.'s can vary on each of these results as to what should be considered "normal" or "average".

You might have one that's borderline that is slowing you down and needs a supplement or stimulation testing, but for that kind of thing then you should go see Dr. Friedman because he is MUCH easier to deal with than the average endocrinologist.

Just check them with a simply blood test to see where you're at before investing more time and money into it.

Get the Spinal Tap.

Take the Prednisone.

The prednisone might effect the hormone levels... there might be a waiting time to get them tested after taking the prednisone or maybe you should get the hormone blood panel taken before starting the prednisone.

Feel free to PM me with any questions you might have.

I started taking the hormones about 7-8 months ago, so it's really fuzzy trying to remember what I was going to try if they didn't work... sorry...

I do remember not wanting to give up despite my Dr. starting to talk about acceptance that I was going to have to live like that for the remainder of my life. I remember my boyfriend telling me that if my Dr. wasn't interested in trying to find a solution than maybe it was time for me to find a new Dr.

Hi Joe,

I read through the thread and didn't see what is causing the issue with walking to see if I have any help to offer. At first my dr's thought it was vestibular, but the therapies didn't help. My walking issues were based on proprioception and bodywork helped.

Proprioception defined - is the process by which the body can vary muscle contraction in immediate response to incoming information regarding external forces, by utilizing stretch receptors in the muscles to keep track of the joint position in the body. Layman terms it means the body's ability to know where it is in space.

While I'm near 7 years post injury I still experience situations that compromise my ability to walk and talk - usually overstimulation. Example: my 1st and last attempt at attending a concert, attending my nephews Chuck E Cheese bday party, any noisy and/or visually stimulating atmosphere - all cause loss of balance, visual problems, horrible headache.

I'm still working on controlling my headaches. The neuro's say it's migraine because I had them pre injury, but this is a constant debilitating headache. Gabapentin helped me, but there are other meds if it isn't working. The trial and errors are difficult to endure, but once you find something that works it's like going from a black and white world into technicolor and well worth the struggle.

Hearing intolerance. I was diagnosed with hyperacusis which is a change in your tolerance to sounds and better described here - http://www.hyperacusis.org/ also plays a role in my ability to walk and talk, as well as emotional lability. I was prescribed musician quality ear filters that I hope to get this month.

At my worst these activities help me:

swimming - I didn't need balance to swim and the exercise feels good. If you get tired you can just float or tread water.

Art - discovered I could draw post injury where I needed a ruler pre injury. See if anything calls to you - it doesn't matter what it is aside from being creative. I even created a dream board from magazine clippings glued to canvas to visualize what I wanted in my future. It helps hand eye coordination and has a meditative quality that allows thinking to flow vs feeling like a chore.

Bodywork - Ex. Swedish massage, Shiatsu (amazingly beneficial), sports massage. I had my car accident while going to massage school and would not have made the progress I did had it not been for the bodywork I received. If you do go make sure you tell them of the brain injury and headaches. You will need more foot work and little work on the head as it can be too stimulating. Energy work is also helpful. I suggest finding an individual locally thru here - http://www.amtamassage.org/findamass...searchcat=famt

Start a Journal - At this point I've forgotten more than I remember. While my family and friends help me remember my progress, reading my own words about my journey is empowering. If you can't write yourself, ask your mom or someone to help. I forget just how much progress I've made over the years until I read my journal. There are times I still get frustrated, upset, angry, etc. feeling I'm stuck. My son reminds me. My journals are a testament to my journey of trials, tribulations, and triumphs. I track how med's make me feel to some pretty dark poetry when at the depths of depression. My one warning - I would forget where I put my journal and start a new one so I have a ton of them all dated, but each one with random dates. I suppose I don't think or experience time linearly anymore so it's a good representation of my rewired brain. :-)

I also found playing Tetris like games or even the children's game Memory either electronic or the original card game beneficial - they help add tactile and kinesthetic memory to augment visual memory.

What I've learned over 7 years - 5 steps forward, 11 steps back is part of the healing process. As the brain rewires itself you'll find you may improve vastly in some areas and take steps back in others. It's okay. Hang in there. It gets better.

I hope some of this was helpful. I wish you the best on your journey.

Kristy

Thanks so much for this detailed and informative answer, Kristy. It was a very kind response. My issue with walking is that I get a headache after even a walk around my apartment. I stop walking when I feel a headache starting to prevent it from getting worse. I know from experience that walking longer distances, like around the block, will cause a severe, debilitating headache which sets my recovery back by weeks. I am weaning off prednisone now, which seems to have made my headaches come on faster and to additional stimuli, such as listening to podcasts for more than 15 minutes. I will check out the link you provided on this - this is new information to me.
Thanks again,
Joe

Joe,

Have you had your ears checked yet? Part of my problem comes from an inner ear problem they found. But it took a while to find them. I saw a neurologist that is also an ear specialist. Who did some testing that I wont lie, made me VERY ill. But it did prove there is damage in my left ear. If you have been researching the folks that worked on Sidney look at Dr. Furman and what he does. He is who I saw. I hope you start to feel better soon, heck I hope we all do!

Laura

Hi Joe,

I was the same way, massive headaches, every single noise bothered me so much, walking hurt my head, tiny noises sent me insane!! my head felt like it was exploding with every walking step, it was awful but did get better over time.

Mind you a year later I am still so sensitive to noises.

Walking was so hard and I went in to vestibular therapy as I couldn't walk in a straight line and I had a problem with my right eye. My OT told me everything is connected so very important to get our eyes and ears checked out.

Even lying down in a dark quite room did not help the headaches. Over time they became less thank God.

I have to write everything down, cannot remember anything.

You have good advice here though, I totally understand those headaches, I'd ask people to please don't talk!! it hurts my head!

I so hope you start to feel better very soon, everything had to be quite around me but it did improve, just took time.

Oh, and months later when I started to feel a little better it all came back which made me feel I was back to square one, I was told this can happen and to keep moving forward, take good care of yourself...