Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 01-26-2018, 02:43 PM #31
shanebox shanebox is offline
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Hi DavidUser

thanks for sharing your story and experience at cognitive FX. Its wonderful news that you are feeling so much better. Hopefully you are one of the lucky ones that experience lasting relief. Some people at cognitive FX seem to get miraculous relief that endures. Please inform us how you are doing now and if your symptom relief has endured past the first week post treatment.

In my experience, most of the patients claim to be feeling a bit better immediately post treatment, but many aren't completely sure. Possibly more hopeful than anything. I myself, certainly felt different right after my week there, like my head felt more clear and lighter. After a few days of being back home post treatment, my hopefulness receded as the clear head feeling went away and I realized I still had all the same old PCS symptoms.

My hope is that you are the former, and continue to experience relief
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Old 06-03-2018, 07:58 PM #32
MicheleV MicheleV is offline
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Any new information, incite on PCS and/or Cognitive FX? Anyone with experience with other concussion centers? UPMC in Pittsburgh? Anyone with exertion therapy experience? Getting desperate for most any kind of help!!
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Old 06-04-2018, 11:59 AM #33
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Quote:
Originally Posted by shanebox View Post
Hi Mark

I am a frequent visitor of NT, yet this was my first post. I have appreciated your input on many subjects, just as I do here to my query.

Please don't mistake my post for a promotion of this company (thanks for the tip about bold text). I have both some hope and also some skepticism in their offering, hence my desire to reach out to others to get some more info.

I'm two years into my PCS, still struggling with chronic headaches, sleep disturbances, exercise intolerance, and fatigue. I also have a 14 month old who has often made the recovery more challenging at times. I have tried many avenues including traditional medicine, vitamins, cbd oil, exercise, and many eastern medical approaches. you name it, I feel like I've tried it.

I am a physician assistant working in medical research (mostly cardiovascular). I do share your incredulity in the claims they make about vascular re-establishment in the short time frame of treatment. They do however perform a post functional MRI, and claim consistent, objective evidence of re-establishing NVC consistent with normative data, which if true is very promising. They also re-image some patients about a year after treatment, showing stability in their treatment and continued improvement in symptoms with adherence to home exercises they give you to continue the treatment. Remember, they don't need to create vascular changes per se, they just need to re-establish the existing physiological NV relationship that was in existence before injury (get the train back on its tracks). so plausible, I suppose, but probable, not sure.

I have not seen their symptom questionnaire, but am curious as to how you propose to measure improvement in symptoms, as they are by nature subjective. The questionnaire is also only half of the measurement of results. the other being the findings on the post functional MRI, which are objective.

I don't doubt their functional MRI capabilities of diagnosing abnormal activation patterns. They have published multiple papers to back this up. I do wonder about the efficacy in their treatment and if it really is reducing symptom burden like they claim it to. I have a friend who corroborates this. I am curious about the one NT participant who claimed no benefit as this is not in alignment with what they told me over the phone. Their claims of improvement have been more all-encompassing, with the exception of some malingerers seeking legal action.

thanks again for your input, any additional info you can share will be helpful in my decision to fork over this kind of money or not. An average symptom reduction of 65% would be hard to turn down for $8K.
Hi Shane,

I am also a PA, now also a PCS victim! 3 months since my concussion and now considering all my options for trying to get myself back to work, life, functioning back in the real world! If you had to do it over again, what suggestions would you give? Would you go with CognitiveFX again? Other ideas, suggestions?
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Old 06-04-2018, 02:59 PM #34
Mark in Idaho Mark in Idaho is offline
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MicheleV,

Welcome to NeuroTalk.

ShaneBox has not posted since January.

What symptoms are you struggling with?

What things have you tried?

What are your daily activity levels like?

Do you get good sound sleep?
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Old 06-04-2018, 06:54 PM #35
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Originally Posted by Mark in Idaho View Post
MicheleV,

Welcome to NeuroTalk.

ShaneBox has not posted since January.

What symptoms are you struggling with? Headaches, worse with any exertion or loud noises, even worse with minimal mental effort. Cant't read, watch TV, do much on computer. Nausea, much worse riding in a car! Eye symptoms-double vision, eye strain, trouble focusing for very long.

What things have you tried?

I've had some balance therapy, vestibular PT. I had nystagmus and BPPV and was much improved with the PT maneuver to correct that.

Saw a neuro-ophthalmologist. I have convergence insufficiency and double vision. I have done eye exercises and patching. But recently was told to stop for awhile because the headaches are still so bad they thought that may be making it worse.
Saw a neurologist. I was started on Trokendi XR- long acting Topamax for migraine headache prevention, helped a lot with the light and sound sensitivity and helped with the dizziness, allowed me to be able to move my head more naturally. Headaches are now less severe but still present daily and worse with exertion, noise, mental effort.

What are your daily activity levels like?

I've great if I do nothing! No symptoms at rest! But I've been all over the place from strict rest to PT 3 times a week to brisk walking 2-3 miles twice a day. Currently, I walk very slowly 1-2 miles twice a day keeping my heat rate 80-90 max. I am not doing any eye exercises at all now for about a week. Not working. Not driving. Not doing any of my usual activities like singing in two groups. Singing, even trying to read my music, makes my head really bad!

Do you get good sound sleep?
No. I try to not nap at all during the day but I don't sleep well at night. I fall asleep but wake several times a night, have weird dreams, talk in my sleep and wake up my husband rolling around. I am more tired in the day but do my best to not nap. I do rest during the day when my head hurts but try hard to stay awake!

I really want to go back to work but have not been released to return to work. I work for a large company that requires a release. I've begged but keep getting told "no, come back in 2 weeks." It's been 3 months now. They won't even let me try part time, won't let me drive.

I'm looking for a second opinion and am considering Cognitive FX even though it's a long way from my home and quite expensive. Thanks for listening!!
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Old 06-04-2018, 11:02 PM #36
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I just did a brain map which showed why my sleep is affected and my brain fog(ADD they call it).

Thought insurance would cover it but was wrong. 30 sessions is around $2100.

What makes these places that use fMRI so much better? rTMS Iím also interested in and seems to act similarly as NF but more advanced. Thatís more costly but insurance might approve it for depression.
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Old 06-04-2018, 11:37 PM #37
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Michele,

I have three ideas for you.

First, read the Vitamins sticky at the top of the index page. Note the soft ice recipe.

Second, consider the likelihood that you have suffered a subtle neck injury. It can cause many of the symptoms you have. It will not image because it is just a subtle injury that causes upper cervical instability. This can be problematic during sleep. It made bumpy rides in the car a problem. Just turning my head back and forth to scan the back yard when picking up after my dogs would trigger symptoms.

I did a lot of neck icing and focused on good posture during sleep and rest. Gentle traction and mobilization by a PT or chiro helped. No 'twist the head and pop the neck' chiro work. No range of motion exercises until after months of limited motions to help strengthen and stabilize the neck.

Third, you may have a sleep disorder due to your neck or other PCS issues. A recording Pulse Oximeter to track your pulse and oxygen levels as you sleep could be helpful. I developed Central Sleep Apnea that was triggered by poor head and neck posture. I would have stressful dreams, fitful sleep, foggy days and sleepy spells during the day. Once I resolved this, my improvement was noticeable.

Have you had your hormones assessed by a neuro-endocrinologist. Many have found it to be helpful.
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Old 06-06-2018, 10:09 AM #38
MicheleV MicheleV is offline
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Quote:
Originally Posted by todayistomorrow View Post
I just did a brain map which showed why my sleep is affected and my brain fog(ADD they call it).

Thought insurance would cover it but was wrong. 30 sessions is around $2100.

What makes these places that use fMRI so much better? rTMS Iím also interested in and seems to act similarly as NF but more advanced. Thatís more costly but insurance might approve it for depression.
Thanks. I don't have depression. But very bad headaches with any exertion or activity, light or noise. What kind of therapy did you have for 30 sessions?
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Old 06-06-2018, 10:20 AM #39
MicheleV MicheleV is offline
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Quote:
Originally Posted by Mark in Idaho View Post
Michele,

I have three ideas for you.

First, read the Vitamins sticky at the top of the index page. Note the soft ice recipe.

Second, consider the likelihood that you have suffered a subtle neck injury. It can cause many of the symptoms you have. It will not image because it is just a subtle injury that causes upper cervical instability. This can be problematic during sleep. It made bumpy rides in the car a problem. Just turning my head back and forth to scan the back yard when picking up after my dogs would trigger symptoms.

I did a lot of neck icing and focused on good posture during sleep and rest. Gentle traction and mobilization by a PT or chiro helped. No 'twist the head and pop the neck' chiro work. No range of motion exercises until after months of limited motions to help strengthen and stabilize the neck.

Third, you may have a sleep disorder due to your neck or other PCS issues. A recording Pulse Oximeter to track your pulse and oxygen levels as you sleep could be helpful. I developed Central Sleep Apnea that was triggered by poor head and neck posture. I would have stressful dreams, fitful sleep, foggy days and sleepy spells during the day. Once I resolved this, my improvement was noticeable.

Have you had your hormones assessed by a neuro-endocrinologist. Many have found it to be helpful.
I am taking omega 3 fatty acids, magnesium, CBD oil, and curcumin supplements. I limit caffeine to one cup a day and no alcohol. I eat a very healthy well balanced diet.

I definitely had some soft tissue neck injury that is still working itself out. I use heat and ice, do gentle range of motion. Car rides are bad but it's more visual. I'm much better with my eyes closed, hat on, sunglasses. But bumpy, curvy roads do bother me a lot too! I had a CT of my neck that was OK for acute injury but I have some arthritic changes. I changed from my favorite memory foam pillow to a lower, softer one which actually helped but I do wake up with a headache every morning still, just less severe. PT has helped some. I haven't had a sleep study or neuro-endo eval but my pulse is slow and regular overnight, in 50s. 70s in day. I monitor it with an Apple Watch and sleep apps. THANKS!!
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Old 06-06-2018, 11:49 AM #40
Mark in Idaho Mark in Idaho is offline
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Michele,

Your supplements are missing all of the Bs. They are the most important. They support myelin sheath health and blood brain barrier health. If the magnesium is mag oxide, it is a waste. Mag ox is a laxative that goes right through you. A calcium citrate mag citrate combined would be good. You need D-3 also.

If you are waking up with headaches, I suggest you focus on sleep posture. I had to learn to sleep on my back with minimal pillow. I get some of my best sleep in a recliner. It is worth it to wake up refreshed. It took a lot of trial and error for me to figure out my sleep issues. I dreaded going to bed because of the stressful dreams and waking up in a fog.

Does the Apple watch tell you anything about your breathing rate or turning in your sleep/restless movements?
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