Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “January, 2013”

31 Jan 2013

Identifying Brain Injury:

There has been a lot of attention focused on brain injuries recently. We are finding out more and more every day that minor hits to the head can lead to ongoing issues with cognitive abilities.

It’s been over 18 months since I experienced my brain injury due to extra pontine myelinolysis. It was very shortly after the injury occurred that the MRI images stopped showing the lesions that were originally there, but I continued to experience deficits.

Initially, I had an abnormal EEG, but subsequent EEG’s done 8 to 12 weeks later showed normal.

What does it mean when your images show everything has returned to normal, but you are still experiencing issues? Trust me, I had a doctor tell me that because my tests were now normal that my symptoms were not being caused by the brain injury.

This leaves you in a position of not knowing, and this lack of evidence in  current medical imaging/testing is what so many people with brain injuries face. Whether you were injured after a roadside bomb in Iraq, had minor or major concussions after playing in sports, hit your head after falling off your bike, or suffered from an internal injury like stroke or CPM/EPM, you may experience symptoms long after your injury. In some cases, your symptoms may become progressively worse, but the images don’t show any injury at all. Doctors rely so heavily on what the tests say vs what the patient says that you may face a doctor telling you that there is nothing wrong with you, and that is beyond frustrating and depressing.

This is what has caught headlines as more NFL players are ending their lives over their ongoing decline in cognitive abilities. They have gone through testing, MRI, neuropsychological exams, EEG’s, CT’s, etc and the tests showed that they were normal.

It is the frustration that millions of people face each year as they struggle to find answers and more importantly find help.

The most fantastic news that I have is that technology is starting to advance to the point that doctors can finally start to identify injuries that weren’t detectable by any other methods. This is such a relief to those of us who live with the consequences of brain injury. It is so unfortunate that so many doctors need to have this “physical” evidence instead of trying to help a person deal with the outcome of their injury. In other words, would some of those NFL players that took their lives still be alive today if a doctor told them, “no matter what the tests say, you have an injury and let’s work to fix it” ?  If they got treatment based on the symptoms that they experienced instead of being prescribed anti-depressants and anti anxiety medications, would they be here now? It’s a tough question to answer, but the loss of their lives had a purpose. It has brought awareness and funding to support brain injury research.

The purpose of this post is to bring to light some of the most current research on brain injuries. What are the new tests being done? Where are they being done? Will they help you?

One type of injury that we tend to not discuss often is “chemo brain”. Chemo brain is a term used to describe people who have undergone chemotherapy and experienced cognitive issues, especially with concentration and memory. Doctors have dismissed those symptoms as being depression, anxiety, fatigue, etc. They did not believe that they were caused by a physical condition. However, in December of 2012, several research studies using fMRI, PET and other scans, showed evidence that chemo brain is real.

Often, cognitive complaints were associated with persistent fatigue and depressive symptoms, making it challenging to sort out whether or not the complaints of poor memory, attention, and difficulties with multitasking were related to brain dysfunction or were merely a manifestation of an uncontrolled mood disorder.4–6 Many who complained were younger patients with breast cancer who had become menopausal prematurely with chemotherapy, and their experiences of vasomotor symptoms, nighttime awakening, and poor sleep might have explained some of their cognitive complaints.7

http://jco.ascopubs.org/content/30/3/229.short

The study goes on to explain the reasons behind why chemo brain (and in my opinion other brain injuries tend to progress). As I have mentioned prior in my blog and this research paper goes on to suggest, there seems to be an autoimmune response that causes ongoing inflammation and injury to the brain.

Concurrently, an increased understanding of immunology and mind-body interactions (psychoneuroimmunology) has made us more aware that events in the body (tissue trauma and inflammation from surgery, radiation, chemotherapy, and biologic and targeted therapies) can trigger systemic inflammation with secondary effects on the CNS.21,22In parallel, stress and cognitive threats can have direct effects on the hypothalamic pituitary adrenal axis and the sympathetic nervous system, leading to systemic responses that can affect the immune system.23 In addition, immune cells, responding to inflammation can traverse the blood-brain barrier and increase local inflammation in the brain, affecting emotional and cognitive function without the need for direct diffusion of chemotherapy into the brain substance.23–25

http://jco.ascopubs.org/content/30/3/229.short

The technology used to determine differences in the white matter between the control group and those treated with chemotherapy was called magnetic resonance imaging diffusion tensor imaging (DTI). The women that they tested showed decreased testing ability in memory, concentration/ attention.

Finally, the DTI detected decreased white matter integrity in tracts involved in cognition in the women treated with chemotherapy with no changes observed in the two control groups; this suggests a causal relationship between the chemotherapy exposure, cognitive complaints, NP test abnormalities, and white matter changes.

http://jco.ascopubs.org/content/30/3/229.short

PET scans are also being used to detect chem brain. When I hear accounts of chemo brain, the symptoms they mention are identical to those that I experience. It is so frustrating to have doctors tell me that this is not real, and I know that this is the same frustration experienced by so many of us who are suffering from brain injuries of all varieties. It brings me some relief to know that more research is being done, and technology is starting to show the causes of what we experience. I recommend the following link to learn about PET scans in the use of diagnosing chemo brain: http://www.npr.org/blogs/health/2012/12/28/168141465/another-side-effect-of-chemotherapy-chemo-brain

A friend posted these links about newer imaging used to diagnose brain injuries. I haven’t researched all of these as it takes a significant time for me to read through information, but I really want to get this information out there.

MEG Scan – detects errant electrical activity in the brain. Used in conjunction with FMRI and EEG.
http://www.research.va.gov/news/research_highlights/brain-injury-090808.cfm 

Diffusion Tensor Imaging (used above to diagnose chemo brain):
Problems in the white matter—for example, nerve fibers that are not bundled together coherently or that have lost their fatty “myelin” coating—show up in DTI scans but not in regular MRI scans.
Huang says he hopes to eventually incorporate a third imaging technique, chemical shift imaging (CSI), also called MR spectroscopy imaging. This method reveals the distribution of certain chemicals in the brain—another potential marker for subtle brain injury. http://www.research.va.gov/news/research_highlights/brain-injury-090808.cfm

MRI Neurography – Shows nerves. http://en.wikipedia.org/wiki/Magnetic_resonance_neurography
Magnetic resonance neurography (MRN) is the direct imaging of nerves in the body by optimizing selectivity for unique MRI water properties of nerves. It is a modification of magnetic resonance imaging. This technique yields a detailed image of a nerve from the resonance signal that arises from in the nerve itself rather than from surrounding tissues or from fat in the nerve lining. Because of the intraneural source of the image signal, the image provides a medically useful set of information about the internal state of the nerve such as the presence of irritation, nerve swelling (edema), compression, pinch or injury. Standard magnetic resonance images can show the outline of some nerves in portions of their courses but do not show the intrinsic signal from nerve water. Magnetic resonance neurography is used to evaluate major nerve compressions such as those affecting the sciatic nerve (e.g. piriformis syndrome), the brachial plexus nerves (e.g. thoracic outlet syndrome), the pudendal nerve, or virtually any named nerve in the body.

There is also a new one called high definition fiber tracking. http://schneiderlab.lrdc.pitt.edu/projects/hdft

Finally, there is Tau imaging: http://www.sbir.gov/sbirsearch/detail/102432

I will try to add and complete more of this post as I research further and learn more about the different types of imaging, but it is exciting work for those of us suffering from brain injury. Hope is on the horizon for getting answers and evidence for why we continue to experience the symptoms that we do.

 

 

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Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , , , , , , , , , , , ,
29 Jan 2013
3 Comments

Alternative Treatments for CPM/EPM and Brain Injury:

Hi, there.  I hope all is well, and moving forward for you.

I wanted to include this information from my friend, Adam. I have not researched this product or group myself, so I can’t account for what it says, but it seems like if it does everything that they promote it does, this could be a HUGE step in Brain Injury recovery and prevention of degeneration.

This is from the information that he sent me. It really sounds promising:

I am having a little trouble posting on your blog. Tried to post this
Actually the product I am referring to is at GNC Anatabloc. It has anatabine in it.

See also www.anatabloc.com You can see testimonials all over the internet.
www.gnc.com for one

My sister with lupus and diabetes, my neice with thyroid problems, a friend with MS and 100 other people I know are taking.

Controls and attacks inflammation. See brain studies.

TBI is traumatic brain injury
TBI

According to the Centers for Disease Control, 80,000 people in the United States suffer long-term disability from a traumatic brain injury (TBI) annually. Roskamp Institute scientists conducted a research study of TBI and control mice by administering a-natabine to measure its effectiveness for recovery from injury using scientific accepted methods. TBI mice treated with a placebo and the sham (untreated) mice recovered at a similar rate with deteriorated motor and cognitive functions. The a-natabine treated mice however had a significant recovery the researchers believe, by inhibiting inflation and reducing amyloid production. To quote the published research paper; “A-natabine treatment appeared to completely prevent the loss of spatial memory retention following severe TBI. Further study of this promising treatment is warranted and will include treatment in a mild closed head injury model as well as long term outcome from injury. Dietary supplementation for reducing secondary injury after TBI offers an easy path to clinical application and simplifies the administration of the therapeutic.” This pathological information warrant further studies with ongoing research in exploring other models of TBI using anatabine.

Alzheimer’s disease

Research study findings by Roskamp Institute were presented at Neuroscience 2012 about the impact of a-natabine in treating Alzheimer’s disease (AD). AD is a neurodegenerative disorder that causes problems with memory and behavior due to the increasing death of nerve cells in the brain. Most scientists, supported by research done at Roskamp Institute, agree that excessive amyloid plaque buildup (Abeta peptides) and neurofibrillary tangles (twisted protein fibers named tau) are directly related to the brain nerve cell loss. Data from the study using a well-known mouse model of AD shows that a-natabine treated mice have a significant reduction in the accumulation of plaque in the brain as compared to the control population. Scientists believe this occurs because a-natabine reduces or regulates human neuronal like protein BACE-1 (the rate limiting enzyme responsible for Abeta production). Cognitive tests of an ongoing investigation of a-natabine treated mice show greater cerebral functions and improved abilities as compared to the non-treated sample. Data from the study also show a-natabine’s anti-inflammatory results. A-natabine reduces neuroinflammation and STAT3 phosphorylation in the brain of transgenic AD mice. Additional research is warranted based upon results of this study regarding the potential benefit of a-natabine in the treatment of Alzheimer’s disease

http://www.rfdn.org/inflammaging.html

Here is a summary of the important research done at the Roskamp Institute.

http://www.mullanalzheimer.com/livesite/

http://www.rfdn.org/ms_anatabine.html

A quote re the peer reviewed study from Dr. Michael Mullan, the CEO and President of the Roskamp Institute, “Anatabine continues to demonstrate widespread anti-inflammatory properties in a broad array of pre-clinical models. Given the commonality of inflammatory systems in rodents and humans, there’s much reason to expect that anatabine will demonstrate similar properties in humans. In fact, the team went on to demonstrate that in human blood inflamed with LPS, the presence of anatabine dramatically dampened the inflammatory response, a result also included in the paper.”

After consulting with my cousin, the product that they recommend for inflammation is Neprinol. The difference between the product that Adam is recommending and Neprinol, is that Neprinol actually eats away at scar tissue. It dissolves it. The product that Adam is discussing, prevents inflammation. It makes me think that these two products combined could be a super healing combo for everything from arthritis to brain injury.

I will try to research these products more to find out what validity that they have or what the current research is describing, but these natural remedies tend to hit the market decades before mainstream medicine begins to manufacture information. For instance, my Aunt has been promoting the benefits of probiotics since the early 1980’s. Now, almost every doctor recommends probiotics after you finish an antibiotic. It is key in recovering a good GI system.

 

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , , , , ,
22 Jan 2013
4 Comments

Figuring it out:

I feel like I have been failing at keeping up with the blog. There have been many changes happening over the past few months that have made it difficult for me to work on this.

One of the greatest challenges has been in job. There has been a mandatory transfer to a new department that has left me mentally drained.

It’s harder than my previous position. It deals with problem solving, and you have to be able to think through situations that can be unique, and I have lost that.

Prior to the injury, I was able to multi task without issue, and I was able to process information and come up with solutions. Now, it can take several other people’s assistance for me to stay focused and on topic.

For instance, I am trying to write this post, and my significant other feels it necessary to play the Inaugural speech. I explained that I didn’t want to listen to it (I’m working on this), so I he moved his laptop into the kitchen so he could listen to it while he cooks. Our place isn’t that big, and so even though it’s not as loud, I can still hear it as if I was playing it myself.

So, my attention drifts, and I’m becoming more irritated as I know that he knows that I have a hard time staying focused in the best of situations.

Frankly, it’s stressful, and I know that if you are dealing with a brain injury or CPM/EPM, that you know exactly to what I am referring.
It’s not an intentional deficit, but it’s a frustrating one.

There are days that I just want to put in ear plugs and bury myself in an underground bunker, so that I can get away from the external crap that bombards me. The dog barking, the neighbors walking, the smell that I can’t figure out where it is coming from, a light, a noise, a sigh, a cramp, a door shutting, my son playing video games, all of these stimuli crash down on me constantly!!! It pulls at my focus. I simply can’t shut the freaking things out all the time, especially if I’m tired or stressed.

It’s absolutely exhausting. It takes so much time for me to pull myself back to what I was doing, and that’s what makes doing my job so hard.
There are days when everything seems normal, like I seem normal, but then there are days when it feels like I’m going to explode or implode from stimulation overload.

(Like just now, I remembered I wanted to contact someone new that I know has a brain injury. I want to get back to several friends that are currently suffering from CPM to find out how they are doing, but by the end of this post, I will probably not remember again. You never know.)

This is where my cognitive and occupational therapist come into play. I am extremely blessed to have two of the best therapists in the world. When I work with them, it is exhausting and stressful, but they can direct me and ground me back to what I need to do.

Ironically, they currently believe that the best thing for me to do is nothing. They have suggested on numerous occasions in the past nine months that I stop working. However, if you are like me, that is probably not possible.

I am writing this post to pass along some of the insights that they have given me.
Initially, they felt that if I came to a point where I was getting stuck, that I should keep pushing forward.

If I couldn’t figure out a word, then I should keep pushing myself to try to figure out the word that I wanted to use. If I couldn’t remember exactly what I wanted to say (lost my train of thought), then I should keep working through the words and trying to explain what it was that I wanted to say.

They felt that this would help develop new neural paths, retrain my brain.

They recently discovered through conferences that this just creates additional stress on the person, and it might have a more negative impact on recovery.

It just goes to show you, nothing is set in stone. There may not be an universal answer. I think you have to use a combination that’s best for you.

They have also come to the conclusion (and this has been one that they have been saying for a while), less is more.

You have to try to eliminate stress. You have to downsize your responsibilities. I guess it goes back to the idea that you have to learn to crawl before you learn to walk.

So, if you have a hard time keeping up with your daily responsibilities, you should try to transfer those responsibilities to the person(s) in charge of your care.

For instance, today, I’ve had a very full plate. For me, post injury, I consider this a full plate, but if you’re a caregiver you might be like, that’s nothing. Keep in mind, after having a brain injury, it is difficult to get much of anything done.

My to do list for Today:

1.) Take my medications

2.)  Have breakfast

3.)  Go to the gym

4.)    Pick up prescriptions

5.)    Make fajita marinade and season chicken

6.)    Go to the grocery store and buy additional chicken

7.)    Write a letter my supervisor

8.)    Write a letter to our human resource department

9.)    Call the mortgage company (not sure if mailed payment)

10.)   Mail Thank You card

11.)    Mail invitations

12.)    Clean out car

13.)    Write to Cedar Fair

14.)    Check for Shoes

15.)    Pay bills

16.)    Write blog post

17.)    Check on status of portrait (order placed in November)

What I actually did:

1.) Made fajita marinade

2.) Went to the grocery store and bought chicken

3.) Wrote a letter to my supervisor

4.) Wrote a letter to my human resource department

5.) Wrote a letter to my lawyer

6.) Worked on my blog post

7.)  Called the mortgage company

This was a full day for me. I’m exhausted now. I’m ready for a break, and that was the point of my therapists. Prior to this, I would feel guilty for not getting everything done or I would chastise myself.

You can’t do that. You do have to simplify. You also have to prioritize. Were the things that I did today necessary? For the most part, yes.

You need to put you first, and make rational decisions on what is WORTH your physical and mental energy, and you have to be accepting of your decisions with the knowledge that they are, for the most part, not set in stone.

The Building blocks to rebuilding you:

 

1.) Let go of what stresses you.

2.) Simplify your responsibilities where you can.

3.) Accept that you have new limits.

4.) Be happy with your decisions.

5.) Understand that you, for the most part, can change your mind.

6.) Prioritize your responsibilities based on what is worth your physical and mental energy.

I hope this foundation helps you in moving forward in your brain injury recovery.

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