Post Concussion Syndrome -- thoughts on alternative therapy

Mark in Idaho · 10-27-2009, 03:01 AM

Sorry to hear of your daughter's struggles.

This is a tough situation, especially at 15 years old. Been there, done that, while living in Naugatuck.

What part of CT do you live in? Maybe we can find a good resource for you.
I was fortunate to find a good neurologist in Waterbury but that was decades ago.

Sounds like you need a neuro with experience with trauma induced epilepsy. I was put on anti-seizure meds at 16. This age is tough for concussion because the brain is working overtime as it matures and the body goes through many other maturing changes.

Has she requested help with school work? Find the CT agency that advocates for the disabled. She is currently 'disabled' by medical standards. The Advocacy agency should have a PATBI case worker. (Protection and Advocacy for individuals with Traumatic Brain Injury)

Here is a link that might get you started.

http://www.ct.gov/opapd/cwp/view.asp?a=1742&q=447008

http://www.drcfc.org/gbda.htm
or
http://www.ct-dac.org/

Also check with the state BIA group at http://www.biact.org/

She will need an IEP, Individual Education Program until she has recovered to be mainstreamed. She will have access to PSAT, SAT, and ACT tests without a time limit. These organizations should be able to direct you.

Until then, help her relax. Stress is the worst thing for a concussion. You might consider getting her hormones tested. Thyroid, DHEA and all of the sex hormones can get screwed up. She may have a B-12 and folate deficiency too. Common with PCS. These can all be tested with a few vials of blood.

Keep her away from caffeine, artificial sweeteners, MSG, high sugar content foods, etc. Her brain needs protein and essential fatty acids. Get her sunglasses and the yellow foam ear plugs to wear when she tries to go out.

I could not survive without my sunglasses, wide brimmed hat, and yellow foam ear plugs. Noise and light will over do me if I am not careful

Down load Dr Glen Johnson's TBI Survival guide at www.tbiguide.com

It is the best resource. Have the family read it. This will be your life while she recovers.

A good part of her recover may be learning skills for how to deal with her struggles. I have many "work-arounds" that enable me to get things done.

I have been living with PCS for over 40 years. Between recovery and work-arounds, we can have a full life.

My best to you and your daughter.

Linda (Mom) in CT · 10-28-2009, 02:28 AM

Thank you Mark for your response. That is a lot to digest and follow-up on. It will keep me busy for awhile. I appreciate ALL of the information especially on the advocacy agencies for schoolwork & SAT's, bloodwork and supplements.

Did you have any experience with using Homeopathy? How about Omega 3 Fish Oil? I've heard a lot on the radio about that being helpful for memory and brain health.

Linda

10-31-2009, 04:07 PM

Linda,

I'm sorry to hear about your daughter's experiences with neurofeedback. Like any treatment, it is only as good as the person administering it. If you get to a point with her where none of the medication is working, I would encourage you to look into it again. It was actually first used( and studied) to treat seizures and epilepsy, so it may be beneficial for her in that area.

Quote:

Originally Posted by Linda (Mom) in CT

To: mhr4,
Thank you for responding. We did do hyperbaric oxygen 40 one-hour treatments Nov 2008 - December 2008. It was expensive and no difference in her major symptoms except she seemed less tired in the evenings. We also tried the neuro-feedback about 4 times but it gave her a really bad headache. She didn't want to continue.
Again Thank you - Linda

Linda (Mom) in CT · 12-31-2009, 10:59 AM

Hi,

I am thinking about the qEEG-guided neuro-feedback with Dr. Walker in TX for my daughter.

What do you know about it? Have you tried it? Did it help?

Linda (mom) in CT

March9 · 04-11-2010, 01:34 AM

Quote:

Originally Posted by goodscout

Hi --

I am suffering with PCS after taking a fall and banging my head on the ice last December (8.5 months ago). It has been, at times, debilating and I am beginning to feel like this may never go away. I had a couple of CT scans and an MRI which have been negative. I have seen a chiropractor, a cranialsacral therapist and physical therapist, and nothing seems to help. I live in Boston and went to the head trauma center at MGH, and they basically told me the only recourse for PCS is to wait it out.

I wake every day with a head-throbbing (from the point of impact -- back of my head), stiffness in my shoulders and back, and nausea. On a good day the nausea goes away after a few hours, and on bad days it is coupled with an overall fogginess that with me all day. And, to add insult to injury, I am no longer able to tolerate the smell of coffee, even if it's just someone carrying a cup into the room.

At the six month mark, I had a brief respite of feeling much, much better. For about four weeks, I felt like I got my life back. I started to work out a little, and the neurologist put me in physical trherapy to get some strength in my upper back and electrical stim for my tight neck. After a couple of weeks (and yes, probably overdoing it with projects at home after six months on hold....) the symptoms returned, with even greater intensity. Today I felt so miserable (could barely hold up my head, throbbing "heavy" head and nausea) I went into the ER. They did another CT scan, and a spinal tap to check pressue on the brain and to rule out other conditions. Both were negative.

So, a couple of questions for this group....Does anyone see any (even mild) activities that contribute to a relapse? Also, has anyone tried alternative therapies (accupuncture. osteopathic doctors) with any success? I am currently not on any meds execpt Ibuproben.

I have tried to have a good attitude about this so far, but I will admit that I am starting to panic that this is going to be my life. I don't go out at night, have not worked out in months (even riding a bike seems daunting) don't drink and basically live pretty simply. I have two young children and it is all I can do to keep the home fires burning. My spouse is wonderful and jumps in 200% if I am having a rough day. I'm just hoping for a light at the end of the tunnel.

Thanks for your feedback.

BeccaP · 04-18-2010, 08:29 PM

Quote:

Originally Posted by March9

It is hard to keep a good attitude, but I've pretty much decided that I just end up feeling worse when I give in to the feelings of hopelessness and discouragement (I'm a mom of 3 young'uns, being unable to care for my family properly is simply horrid, luckily I've got an understanding hubby to pick up my slop). So I keep trying to stay positive and focus on the things that have improved, however small they may be. It is hard to be patient with the rate of recovery, but if I think back in months, rather than days, I can see improvement. I'm a little over 6 months of PCS and have to be extremely careful with exertion, physical or mental. Trying to do too much makes the symptoms worsen for days. I'm going to an upper cervical chiropracter this week, also will follow up with an inner ear doc to rule out inner ear damage (VNG testing). I tried physical therapy (for neck pain and dizziness/balance) it helped a little. Nutritional therapy (similar to what Mark and Vini have posted) seems to be helping. My neurologist recommended acupuncture but I haven't done it yet, one thing at a time. I don't think there is one thing that will work for everyone though...best wishes in recovery!

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