Lighten up PCSMcGee.
I was not referring to EMDR. EMDR is even less researched the the light therapy you refer to. SYNTONIC PHOTOTHERAPY has been around for decades but has had a recent resurgence. Dr Tessler's therapy sure sounds like SYNTONIC PHOTOTHERAPY. No it is not EMDR.
I did not mention the reason I compared craniosacral therapy to Knagan water as both placebo initially because to get the max effect from a placebo, the patient needs to not know it is a placebo. Read the scientific studies. There is no difference. The researchers state that the placebo value validates the use of the therapy as long as the cost is acceptable.
Your own comments make my case. Unless you have had any of the reliable diagnostic tests, your recover is just anecdotal. If SYNTONIC PHOTOTHERAPY worked for you and you could afford it, good. If not, you wasted a bunch of money. Head injury survivors end up with limited resources due to being denied by so many doctors. We need to be careful about therapy expenses.
You say you tried many physical therapy modalities and got no relief. That is understandable and common. Most physical therapist are "jacks of all trades and masters of none." I have had three neuro-psych exams. Even thought the scores of the tests say I have an organic brain injury, all three try to say I have a psychological causation to my dysfunctions. They are so sure of their diagnosis that they hide the scores of the tests that contradict their diagnosis. One even reverses the scoring scale to justify his position.
EMDR is a dangerous concept in my mind. It appears that it was developed by someone who saw some value in SYNTONIC PHOTOTHERAPY but wanted to add his own psychotherapy (talk) to the mix. The vagarities of talk therapy itself can be dangerous.
Some people are very responsive to placebo. Those same people are often more reactive to other symptoms. Not that their reactions are "thought up." But rather that their whole body system reacts differently than the others. It is the same with hypnotherapy. It works wonders for many and is useless for others. It does not make either group better or worse than the other. They are just different.
I attended a brain injury support group for the first time last night. The caregivers' small group leader (trained professional) emphasized the need for the injured party and his caregivers to accept the injuries as real and react as if they are permanent. Then as they learn to change behaviors to accommodate their symptoms and dysfunctions, they lower the stress in their lives and healing happens faster. If they no longer need to use the work-arounds and accommodations, great. In not, they have learned skills that will benefit them for years to come.
Demanding a quick-fix is unreasonable.

Your hypothetical situation with cranio-sacral therapy is common in many areas of therapy. The cranio-sacral therapy may do something physiological or not. It also may provide a compassionate care system that over time allows the patient to heal. Take arthroscopic knee surgery. I have had it three times. Only one time did they find a tear. The prior two times they did not find the tear but my knee was much better after. The orthopedist explained it this way. The prior surgeries required that I rest my knee for a few weeks because it just would not function at full strength until it recovered from the trauma from the surgery. During this time, the inflammation response of my body and the rest the knee received allowed the body to focus healing a resting knee. Did the surgery accomplish nothing? Clinically no. In reality, yes. The knee was better until it got overworked years later.
The simple fact that the patient usually knows that the therapy (cranio-sacral or Kangan water or ???) will take time to effect healing causes the patient to rest and wait for healing. Is this a placebo effect or is it an actual healing from the resting? We do not know. The valid point is that things got better.
The same goes for accepting your symptoms and learning to accommodate them. As you relax and rest, healing has a better chance.

Are you understanding my point? Brain injury does not have any quick fixes nor 100% fixes. Get used to it. When you do, you will feel better.

Oh, and I disagree with your claim that EMDR is the most widely accepted form of effective PTSD therapy. It is accepted by those who know how to make money using it. It was not commonly used in the VA system until after 2004. It has only been promoted by the EMDR HAP association. It is still being researched by the VA. Some claim it is no better than CBT. Oddly enough, it often included CBT, so how would you tell if the EMDR addon is working. It got a push when it finally got accepted by the psychiatric association. That usually means they got it a CPT code so they can get paid by insurance companies, not much else.

You ask about how they measure success rates for cranio-sacral or Kangan therapy. Many of these therapies are done long before the more expensive diagnostic tests. Qeeg and neuro-psych cost $2,000 and up. And all they do is confirm a problem. Many choose to try a therapy first. If it works, great. If not, you try the next most affordable therapy. This is how modern MEDICINE works. Notice, many of todays ailments are first treated with a drug. It is usually just a "try this" concept. It is usually not a "Take this, it will solve the problem." I like how they call medicine a practice. They keep trying until they get it right.. or the patient goes away.

So, what diagnostic test have you had? You can be specific if you want.Since I have had to spend a small fortune of my own hard earned money in my search for answers, I probably know what they are.

My mistake, most people aren't familiar with the concept of syntonics. The therapy I did actually isn't the same as syntonics, but to lump the two together wouldn't be any great injustice. They are founded on very similar philosophies.

As far as the rest of your points are concerned, we're just going to have to agree to disagree. The effects I experienced from craniosacral work were not slow developing and nebulous, they were immediate and unmistakable. For me, there was no "I wonder if this is working" with craniosacral work. It couldn't have been more obvious.

This was my experience. I would not expect that everyone with PCS would have the exact same experience, but I would expect that some people with PCS would have a similar experience, so I would recommend at least trying it to people who are looking for therapies that might aid or expedite their healing process. Did craniosacral work completely resolve every bad thing going on in my body? No, but it exorcised a big fat chunk of them. For that, I'm extremely grateful.

Dear Poster,
That is an awesome idea, if I had any sort of scientific mind, I would want to do the same thing. The most promising thing that I have read anywhere is a study being done by a certain college which I can't remember.
Anyways, the study is trying to prove that PCS patients can improve if they are put on a very slow progression increasing their exercise from nothing to normal life again. It is a very slow progression and it must be supervised so that the patient does not progress too slowly and so that they continue despite headaches and such.
I am trying this in my own way, and I do feel better whenever I have a certain amount of excercise in my life, but if it is too "bouncy" then I just get worse, walking for 2 hours a day was my routine during the school year and then I slowly tried doing other things, some of those things set me back, but others gave me new opportunities. I have found that only sleep and quiet help my headaches in the long run, but sleep and college don't go together, so instead I just go really hard for a while then get sick and spend three days in bed then do it all over again. I guess I will just have to keep it up for another six years because I am planning on earning two Bachelors degrees, one in Liberal Arts and the second in Nursing.
I would also warn that I have read and heard many times that pain killers, in the long run, actually make the headaches worse and you just have to keep taking more and more as time goes on.
The thing I found most comforting was having a couple close friends who I told exactly how I was feeling at all times and were kind enough to take my problems into consideration. Knowing that not everyone thinks I am crazy and not everyone thinks I am milking it, is very nice. But I warn that it is very waring on the friends and family. In many ways, I think it is better to pretend that I am all better and just more reclusive than to have them worrying that something is really wrong and that the docs are just incompetent.
Well, I need to sleep.
TTFN
Margarite

PS: I know Mark disagrees about the pain killers, but I have personal experience and I have read and heard of many, many other cases of this.

Margarite,

The situation you are referring to with pain killers is called "rebound head ache" or Medication overuse headaches (MOH). They are due to constant use of pain killers. Some will use painkillers constantly and even over dose slightly in the constant use of the pain killers. This is a common risk of persistent migraines.

Taking pain killers only when the pain exceeds a certain level with time off the painkiller is considered safe.

My headaches tend to be in clusters. I can go days without a head ache but then have a week with daily head aches. I use Tylenol or Tylenol/aspirin in combination for these on again off again head aches.

Some will find ibuprofen (Advil/Motrin) helps or naproxen sodium (Aleve). Ibuprofen is contra-indicated if one takes an SSRI or SNRI.

There is great value to learning to rest or relax to reduce the severity of a head ache. Every body/brain is different and responds to pain/painkillers differently.

I don't presume to have the answer for any individual's head aches. I have a friend whose headaches/migraines often do not respond to anything. He ends up in the ER or such from the nausea and dehydration.

keep in mind that overdoing it so that one needs bed rest delays recovery according to some researchers. I went through this cycle myself. i would work hard, get into miserable condition, sleep for most of a week or two, get better and repeat. I did not imp[rove until I slowed down and let the recovery last.

But you mileage may vary.

Getting a bachelor's degree finished is worth some sacrifices. A BRN or RN-B is not an easy course to complete. Your efforts are commendable.

The slow progression concept is a valuable way to work through PCS. It is based on the concept that exercise is good but overdoing it is counterproductive. So, if one can be disciplined to stay within the comfort level with exercise but slowly continue to stretch that comfort level, one can see improvement.

PCSMcgee was referring to cranial sacral therapy that as a whole is based on bad science. There are individual bits of benefit received from some CST work, specifically the spinal massage/manipulation. The cranial plate therapy is very controversial and without scientific basis. Spinal massage/manipulation can be a result of CST, regular physical therapy, chiropractic, and upper cervical chiropractic.

I have benefited from spinal massage/manipulation form both a chiropractor and PT. I usually experience a slight increase in head ache immediately then a over-all reduction in head ache intensity a day later or so.

My best to you.

Dear Mark,
Thank you for your replies.
My headaches are constant there is not a single day and almost not an hour without a headache. So, for the PCS people like me, meds are not OK.
I have heard of the advil/tylonel approach, that it is an almost instant cure for pain of a certain degree. I only wish my headaches were a constant level of pain so that I could cope with them better. Instead it fluctuates with the wind.
Well, time to go. Good luck all!
TTFN
Margarite

hi Megan

sorry you have an injury , I have not tried this nor am I recommending it But ?????? if it has ????? helped with chronic conditions then perhaps low dose maybe??? effective

I do not have the energy to look into the active ingredient of this therapy but Veda medicine as old as time

this maybe a good comparative study for us to look into
keep us posted

see link

http://g-therapy.org/index.php/g-therapy.html

Margarite,

Have you considered using pain meds (NSAIDs) only sporadically. When used sporadically, the risk of rebound syndrome is greatly reduced. If your head aches fluctuate in severity, then using NSAIDs just when there is a need for better function during a peek of pain intensity might be a big help.

Keep in mind that the PCS brain has a tendency to be rigid in thought. This can manifest as an OCD like thought structure. I have to purpose to let go of some of my rigid thinking. I have a TBI friend who gets very stuck in his rigid thinking to the point that he will spend big bucks because there is a small inconsequential flaw in a water heater of home appliance. This is a common symptom of PCS/mTBI/TBI.

Overcoming this rigid thought symptom with a systematic way of evaluating rigid thoughts can be a great relief.

It is a difficult symptom to overcome, just like head aches are. But, it is a symptom that, when overcome, provides a great level of relief and reward in daily life.

Hope I am not sounding offensive. I have had to deal with this myself. I struggle with it routinely.

My best to you.

9 months ago I suffered a hit on the head which is still serving as a thorn in my flesh. As I wait and pray for it to go away as quickly as it came I have already been on three different meds. I only have the name of 1 with me today... and I don't take it as prescribed but as needed. If you would like the other 2 when I return home I will get back with you.

GABAPENTIN: 300 mg (prescribed twice daily)
When I began taking it as directed I found it made me feel a bit 'intoxicated' but eased my headaches significantly and helped with the frustration issues that arose as cognitive issues continuously interfered with the roles I needed to fulfill in our ministry.
After abt a month or so I found myself constipated so badly that it took a weeks worth of laxatives to get me going again and I removed myself off of it. HOWEVER, when the next meds side effects made no significant help with my headaches or cognitive issues but the side effects started kicking, I spoke with my neurologist and now I just take the gabapentin as needed... if my head is locking-up and shooting pain OR if I am experiencing headaches already and unable to remove myself from areas where there are loud noises or a lot of people who I need to give attention toward.

sherry

Wow, Sherri, I didn't know gabapentin had that side effect. I have been taking 600mg for almost 10 years. But, I only take it once a day before bedtime.

Early on, I had a bowel bloating problem but it seemed to be tied to my TOS. My ileocecal valve (between small and large intestine) would spasm closed. It took me six months of laxatives to get my system working correctly. My PT helped a lot. She could manually release the spasms. My concussion came with some trauma to my neck, especially C-5, C-6, C-7 and T-1, where TOS manifests most commonly. I did not change my gabapentin use during this time. I was taking 600 mgs at 10 pm each day. Now, I take 900 mgs at 10 pm.

Keeping my back in good shape helped with the bloating.

In women, their bowels slow between ovulation and menses to provide more nutritional digestion in case the woman is pregnant. You might try observing when your struggles come if they return.

Gabapentin only has an 8 hour half life. That means that 50% is out of your system in 8 hours. 50% of the remainder is gone in the next 8 hours, and so on. The build up in your system with twice a day may have been the key to your problem. You never had a let down in gabapentin concentration in your system.

My best to you.

Meghan: I seem to have become a poster child (wait...make that the mother of a poster child) for vision therapy.

According to our vision therapist something like 65% of the connections in your brain relate to vision. Many people have undetected vision issues following head injury. My daughter just completed the 4th of 12 visits so its a bit too soon to tell if it will provide anything you might consider to be an "effective treatment". We are so very hopeful.

I can verify, however, that in hindsight (no pun intended) it is apparent that her issues since about the sixth month seem to have been very much tied in with her vision. You can research this through the NORA website. This is more complex than a 20/20 eye chart. This has to do with the "ambient vision system", i.e. how you perceive mid-line, peripheral vision, using the two eyes together, etc. Problems with the "ambient vision system" can result in panic attacks, vertigo, headaches, nausea, etc.

We have also dabbled in reflexology (sort of like a foot rub but more complex) and accupressure...honestly those two seem to work better than any kind of medication.

Good luck on your project!