Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “brain injury”

It’s 4 O’clock in the morning…..

So for those of you new to this brain damage/ CPM/EPM experience, you might soon realize you don’t sleep normally anymore. You might sleep too long. You might not sleep long enough. You might sleep for 2 hours only to find yourself awake until the crack of dawn, so that you can suddenly fall back to sleep at 6:45 am when you need to get up at 7.

What do you do?

For me, I would usually turn to FB to surf cute animal videos and lament on my current insomnia kick, but after several fruitless debates with the general public on topics that I have considerable knowledge, I realized two things: FB stresses me out, and I have no self control in walking away from fruitless debates with the general public. It results in HOURS of going back and forth with people. It results in hours of me trying to find research articles that prove I’m right, that have no sway with the unreasonable.

So, I walked away from FB, at least for now, but tonight, after two hours of sleep, I found myself wide awake. What do I do? My hands twitched for my go to drug, my cell phone. I surfed through my email. Spam. My fingers twitched. Should I log onto FB to just vent my frustration of how much I hate not being able to sleep?

Ugh. I grab my phone and go to medicine cabinet and pop a Xanax along with a TUMS. I need sleep. Now, I just want to mention. You should not combine TUMS or any other antacid with your prescription meds. No. You won’t self destruct if you do, but the absorption of your meds can be greatly hindered by your antacids.

I drag myself back into my bedroom, and I stand there, hovering over the bed like some crazy horror movie serial killer, except instead of a knife, I have an IPHONE. I literally sway back and forth debating with myself–pale, crazy eyed, sleep deprived, hair a mess. I sway left—go write on my blog. I sway right–go back to bed.

Finally, I set down my phone. I climb back to bed, staring at the ceiling. It could be an hour before the Xanax kicks in, and I fall asleep. FB ? No, FB? Oh, the dilemma!

I desperately want to tell everyone about my 6 year old daughter’s recent rant.

Izabel: “Mom! Tomorrow, you need to call Mrs. Morrison (her teacher) and tell her I am NOT coming back to school tomorrow. I NEED A BREAK- EXCLAMATION POINT (waiving her hands up and down for emphasis). EXCLAMATION POINT! (Saying the words-“exclamation point”) EXCLAMATION POINT!  EXCLAMATION POINT! Sometimes, a 6 year old kid just needs a break from school,” she reasoned, “I am not learning ANYTHING new.”  She continues on making her very cogent point. Tom, comes from the kitchen, “This seems like a monologue.”

“It is,” I reply. How can you possibly reason with such a dramatic argument from your 6 year old? I didn’t try. Instead, I used a diversionary tactic, “Oh, look dad has dinner.”

I love my six year old daughter. She is hilarious, and this is just one of those stories that my friends on FB love to read about, so my fingers are itching to jump on and tell them, but I’m also thinking of my last debate that left me leaving FB, and how much I went to get back on the conversation and tear apart the people with facts and statistics and research, which will to no where but will cause stress, fatigue, emotional distress, etc.

That brings me to here. Time is ticking towards 5 am now. I am tired but awake, and I’m trying to figure out what’s the next step. Sleep? Or trying to figure out a new series of posts for either a new blog–a spin off that discusses politics, vaccines, other medical topics, etc. or researching more about brain injuries: newer treatment options, medications, alternative medicines, diets, etc.

This is another problem with brain injury–making choices, wanting to do everything but hardly doing anything because you can’t decide. Just look at how long it took to decide to write this post.

It’s working though. The Xanax is kicking in. I’m getting sleepy, and I’ve decided any decisions about what to do next can wait until 8 O’clock in the morning. 🙂

Have a good night, morning, day!

Advertisements

Hope on the horizon:

I am posting this before I lose track of it. I’m sorry I haven’t posted in so long. My mind and abilities have been absorbed by a new position at work. This new position has become most of everything that I am able to do. It takes up so much of mental and physical concentration that it leaves little ability for me to do anything else.

But this is a show that I watched tonight, and it shows the brain damage that basic MRI and CT scan imaging does not show. It shows the invisible injury that we have, that no one else can see. It begins to explain and give answers to, and hope for, what we are experiencing. Because in order to fix a problem, you must first acknowledge one exists.

This segment of 60 minutes shows that even those with minor concussions can and do experience brain injury that can explain the symptoms that we experience, like ongoing memory issues. It can show that we are NOT faking. We are not malingerers!

We do have ongoing issues from our brain injuries. Don’t lose hope! Answers are on the horizon.

The following link takes you to the 60 minutes segment that shows some of the new technology being used in the military to diagnose minor and traumatic brain injury after concussions. They are now detecting injuries that standard MRI and CT scans do not detect.

http://www.cbsnews.com/video/watch/?id=50146231n

Brain injury: What causes an increase in symptoms?

I have never really thought to research, why would a brain injury progress after an injury. Good news, later is better than never.

It finally hit me that I might find research documenting that after a brain injury, damage continues to occur. I truly don’t understand why these connections don’t come to me.

It irks me.

I might have discussed parts of this subject before. I have believed that the reason people like Jeffery, Michael and Deb, or even the NFL players, experience an improvement and then after a few years a decline in their health, an increase in symptoms, is because there is an immune response that causes further damage.

Some people after they have surgery, in a few years, they have further issues caused by scar tissue.

I have a history of endometriosis. I had a surgery for endometriosis, and it was less than two years later that I was experiencing significant pain. When the doctor did an exploratory surgery, he found scar tissue. He also found significant intestinal distention, but he did not know what had caused it.

Anyway, within a 12 to 18 month period, I had formed significant scar tissue because I had the surgery from endometriosis.

Scar tissue forms from the trauma that was inflicted in the first surgery.

It is in my opinion that this is what happens to those who have an improvement and then experience a decline in health, especially with cognitive issues and memory.

This post will investigate research that shows this connection after brain injury, from stroke, trauma, and other brain insults.

The following paragraph explains exactly what we experience and what might be the reason behind it. It explains that there is a recovery period where symptoms show improvements, and then as time progresses, there is an increase in symptoms:

Despite the tremendous interest in neural stem cell biology, there is little mechanistic insight into stem cell survival following common conditions induced by trauma or other brain insults. Recently, many paradigms of brain injury, including TBI, seizures, stroke, hypoxia-ischemia, and neurodegenerative diseases, implicate neural stem cells in the remodeling that occurs following such injuries (Arvidsson et al., 2002; Jin et al., 2001; Kernie et al., 2001a; Miles and Kernie, 2008; Parent et al., 2002; Parent et al., 1997; Zhang et al., 2001). The physiologic relevance of this proliferation remains unknown, but it may in part explain some of the spontaneous recovery that occurs in all of these disease states. Alternatively, aberrant neurogenesis after injury could contribute to ongoing morbidity that impairs functional recovery. In the following sections, we describe the current knowledge and outstanding research questions in the field of injury-induced neurogenesis. We first focus on experimental stroke and the SVZ, and then shift to TBI models and dentate granule cell neurogenesis.    (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2864918/)

The above article is difficult for me to understand, so I will have a friend try to decipher it in greater detail and get back to me in regards to the relevance in relation to the injuries that we suffer. I believe it is stating that at this point in time, they have not been able to determine if the cells that repair damage in the course of stroke, etc are beneficial, beneficial in the beginning and then cause damage or have no direct consequence in brain injury. I really am uncertain of their direction in the article. They might point out that this is an area that needs to be investigated further. They might also be saying that these cells are only activated for a short period and then die off, and that it is this dying off period that causes the increase in symptoms. That would be an interesting thought, that I have not considered previously:

Since it is reasonably well established that hippocampal progenitors are activated by injury and result in increased numbers of new neurons within the dentate gyrus, ongoing studies can now be directed at relevance and mechanism. First, it needs to be established whether injury-induced neurogenesis is an adaptive response. There are three possibilities for its ultimate relevance. First, the generation of new neurons might be beneficial and contribute to recovery of learning and memory and possibly other functions impaired by brain injury. Second, neurogenesis may contribute to TBI-related morbidity such as temporal lobe epilepsy, which occurs relatively commonly following moderate and severe TBI. Finally, this reservoir of progenitors may be nothing more than a developmental remnant that is incapable of providing functionally relevant neurons into the sophisticated hippocampal circuitry.

(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2864918/)

The next article states that there was research as early as 2003 showing that chemotherapy could cause brain injury. They speculated that it was being caused by possible inflammation, damage to the grey matter and damage to the white matter, or that it is possible that an immunological response caused the injury.

 Although the available evidence suggests a fairly diffuse pattern of changes, memory and executive functions could be preferentially affected. Preliminary data also suggest that some individuals might be more vulnerable than others, leading to investigation of genetic and other risk factors. The greatest gap in our knowledge regarding chemotherapy-related cognitive changes is a lack of understanding of the mechanism or mechanisms that account for the observed changes. Several pathophysiological candidates include direct neurotoxic effects leading to atrophy of cerebral gray matter (GM) and/or demyelination of white matter (WM) fibers, secondary immunologic responses causing inflammatory reactions, and microvascular injury. Altered neurotransmitter levels and metabolites could constitute an additional mechanism related to neurotoxic effects. Advanced brain imaging techniques can directly or indirectly assess many of these mechanisms, but to date there has been very limited application of these tools. Morphometric magnetic resonance imaging (MRI), functional MRI (fMRI), diffusion tensor imaging (DTI), and MR spectroscopy (MRS) are noninvasive techniques that could yield important complementary data regarding the nature of neural changes after chemotherapy. Electrophysiological studies and targeted molecular imaging with positron emission tomography (PET) could also provide unique information.

(http://www.ncbi.nlm.nih.gov/pubmed/14613048)

It is a bit surprising that this information was available in 2003, but it took more than 8 years to get the information to the public. I don’t understand why.

Another abstract explains again, that there seems to be an initial injury and then an immune system response results in long term cognitive decline. It goes on to explain that anti-inflammatory agents might be able to prevent or treat this immune response. I’m sorry that I am unable to get full access to this article. Hopefully, at some point in the future, I will be able to include follow up information for these abstracts.

Brain damage following traumatic injury is a result of direct (immediate mechanical disruption of brain tissue, or primary injury) and indirect (secondary or delayed) mechanisms. These secondary mechanisms involve the initiation of an acute inflammatory response, including breakdown of the blood-brain barrier (BBB), edema formation and swelling, infiltration of peripheral blood cells and activation of resident immunocompetent cells, as well as the intrathecal release of numerous immune mediators such as interleukins and chemotactic factors. An overview over the inflammatory response to trauma as observed in clinical and in experimental TBI is presented in this review. The possibly harmful/beneficial sequelae of post-traumatic inflammation in the central nervous system (CNS) are discussed using three model mediators of inflammation in the brain, tumor necrosis factor-α (TNF-α), interleukin-6 (IL-6), and transforming growth factor-β (TGF-β). While the former two may act as important mediators for the initiation and the support of post-traumatic inflammation, thus causing additional cell death and neurologic dysfunction, they may also pave the way for reparative processes. TGF-β, on the other hand, is a potent anti-inflammatory agent, which may also have some deleterious long-term effects in the injured brain. The implications of this duality of the post-traumatic inflammatory response for the treatment of brain-injured patients using anti-inflammatory strategies are discussed.

(http://link.springer.com/article/10.1385%2FMN%3A24%3A1-3%3A169?LI=true)

The following articles I can’t access, but they seem to describe that this immune response is also prevalent and possible related to cognitive deficits after exposure to carbon monoxide poisoning.

This article hints that there is a cognitive impact after exposure to carbon monoxide:

Neuropsychiatric aspects of carbon monoxide poisoning: diagnosis and management Adv. Psychiatr. Treat. 2012 18 (2) 94-101

The next abstract shows that there is a neuropathophysiological impact that occurs after exposure to carbon monoxide:

The neuropathological sequelae of carbon monoxide (CO) poisoning cannot be explained by hypoxic stress alone. CO poisoning also causes adduct formation between myelin basic protein (MBP) and malonylaldehyde, a reactive product of lipid peroxidation, resulting in an immunological cascade. MBP loses its normal cationic characteristics, and antibody recognition of MBP is altered. Immunohistochemical evidence of degraded MBP occurs in brain over days, along with influx of macrophages and CD-4 lymphocytes.                              Lymphocytes from CO-poisoned rats subsequently exhibit an auto-reactive proliferative response to MBP, and there is a significant increase in the number of activated microglia in brain. Rats rendered immunologically tolerant to MBP before CO poisoning exhibit acute biochemical changes in MBP but no lymphocyte proliferative response or brain microglial activation. CO poisoning causes a decrement in learning that is not observed in immunologically tolerant rats. These results demonstrate that delayed CO-mediated neuropathology is linked to an adaptive immunological response to chemically modified MBP.

(http://www.pnas.org/content/101/37/13660.short)

I really feel that this article, though using rats as the subjects, shows that there is the potential for continued progression of symptoms after the initial brain injury. The article suggests that brain cells continue to die up to a year after an injury in rats. If this correlates to what happens to humans, then this would potentially explain continuing cognitive issues. My opinion in this scenario is that cells that were injured, but not necessarily “killed”, continue to atrophy and die. It might be a combination of factors that cause people with brain injuries to see a progression in symptoms after seeing improvements. It is very difficult to determine without research.

Examination of the injured brains revealed substantial and progressive tissue loss with concomitant ventriculomegaly in the hemisphere ipsilateral to injury. The regions with the most notable progressive atrophy included the cortex, hippocampus, thalamus, and septum. Quantitative analysis demonstrated a significantly progressive loss of cortical tissue as well as shrinkage of the hippocampal pyramidal cell layer ipsilateral to injury over 1 year following injury. In addition, reactive astrocytosis in regions of atrophy and progressive bilateral death of neurons in the dentate hilus was observed for 1 year following injury. These results suggest that a chronically progressive degenerative process may be initiated by brain trauma. Thus, there is a temporally broad window within which to introduce novel therapeutic strategies designed to ameliorate the short and long-term consequences of brain trauma.

(http://online.liebertpub.com/doi/abs/10.1089/neu.1997.14.715)

I have not seen a lot of information regarding the merging of these two sciences, but it would interesting to see if there has been:

Until recently, the brain was studied almost exclusively by neuroscientists and the immune system by immunologists, fuelling the notion that these systems represented two isolated entities. However, as more data suggest an important role of the immune system in regulating the progression of brain aging and neurodegenerative disease, it has become clear that the crosstalk between these systems can no longer be ignored and a new interdisciplinary approach is necessary. A central question that emerges is whether immune and inflammatory pathways become hyperactivated with age and promote degeneration or whether insufficient immune responses, which fail to cope with age-related stress, may contribute to disease. We try to explore here the consequences of gain versus loss of function with an emphasis on microglia as sensors and effectors of immune function in the brain, and we discuss the potential role of the peripheral environment in neurodegenerative diseases.

(http://www.sciencedirect.com/science/article/pii/S0896627309006771)

This concludes this post for now, but it does bring interesting insight and raises questions to what really does happen after a brain injury? Does the immune system cause havoc on the brain once a brain injury occurs? How long will take for those effects to be seen? Is brain tissue still dying years after the initial injury? If so, is that caused from the injury itself or from the immune response? What can we do to save what we have? Are there any precautionary measures that we can take to prevent things from degrading? Like an aspirin does with heart disease, would anti-inflammatories protect the brain?

I wish I had more answers than questions. I wish I had more definitive research, but as technology advances and the spot light on brain injuries widens, I think we will find what we can do. I think doctors will become more understanding to what we experience.

Have a great night!

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.46 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.2325

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.

 

 

 

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.

 

Concerns:

Foreword: I wrote this a few days ago, and I think it gives a pretty accurate description of how frustrating it is to have a brain injury. I wish I had more answers as to what to do for it. Hopefully, as time goes on, there will be more answers, more treatments, more ability to have a normal life or better recovery.

It gives me strength to know that I’m not alone in this. I think it’s important to let you know that even though you might have lived past an injury that they thought you would not survive, even though you are grateful for your life, it doesn’t mean that you don’t grieve over the way your life was.

Concerns:

I don’t know what’s going to happen in my life. It has already changed TREMENDOUSLY. The biggest issues that I have is with the way I think, how I act, not being  able to live my life like the way it was, but this might be as GOOD as it gets, and that is extremely SCARY.

 

I was right. My occupational therapist said that those who suffer brain injuries can have their brains turn to MUSH. Ok, she didn’t use the word, mush, but that’s pretty much what happens. (She thought that was ridiculous before, but she went to a conference and they acknowledged that it was happening.) The brain calcifies. It can take a few years up to 40. In autopsy, they removed the brain of someone with CPM, and their brain CRUMBLED in their hands.

 

I’m 35. I have two kids. I wanted to be a doctor, and that was a realistic possibility, and now I’m stuck working about 12-16 hours a week taking sales calls. I have TRIED to pick up my textbooks. I have TRIED meeting with my MCAT study partner. It doesn’t work. My mind doesn’t work. It’s like throwing cooked spaghetti at a wall. It might stick for a few seconds, maybe a few minutes, but then it’s gone.

I want to get better! I want to be back to normal.

It’s exhausting trying, over and over and over. I find comfort in the things that I do remember. I remembered an appointment, and that gives me false confidence that things are better or that I’m better than I am, and so I think, I don’t really need to write this down. I’ll remember it. Or I won’t need to create a reminder on my phone to pick my prescriptions, I’ll be driving by the pharmacy and that will cause me to remember. That’s how it used to be. Everything, would just fall into place as I did something. I would be able to organize things in my mind, as simply as one puts the pieces of a puzzle together. It was so easy.

 

It does bother me that the other day I could not remember how old I am. I could not.  It bothers me that I don’t realize I bought the same video game from three different places in a 24 hour period.

 

I don’t want o be like this for the rest of my life. I’ve always been a survivor. I’ve always been able to overcome obstacles. I have lived through SO much: physical, mental, emotional abuse, sexual assaults, long term illness (when they couldn’t figure out why). I’ve worked through it all. I’ve lived through it all. I’ve overcome it all, and just as I was beginning to think I had the possibility that it was going to be better (pituitary tumor removed), I was mistreated and ended up with brain damage. And now, to face the possibility that after losing my mental abilities and that now I face years of losing my mental abilities over the course of 5 to 10 years or longer until I die, until my brain turns to mush.

 

I am extremely tired of having to deal with the brain injury, of having to make adjustments to my life. I HATE not being me. I hate that I have to make notes to get things done. I hate that I can’t remember if I’ve taken my medications or not, or that I forget to call a prescription in, or that I didn’t fill the prescription box correctly. I hate the side effects that I get from the medications. I hate that they don’t fix the problem. I hate that I have people question my integrity when they don’t know who I am or how much I’ve accomplished and Lived through. I hate that I have to walk into work and feel like a slacker because I’m not able to work 30,40, 60, 80 hours a week. I hate that I watch the same shows over and over again and that I remember the faces but I don’t remember the story.

 

I hate the stress. I hate the fatigue. I hate that I have to go through this. It’s not fair. It’s not right, and I don’t know what to do about it. I don’t know what I can do about it.

I don’t want to live the rest of my life having other people take care of me. I don’t want to live the rest of my life dependent on medications, physical or occupational therapy. I want to be 35, and live the life of a 35 year old. I want to go back to school. I want to get into medical school. I want to be a doctor. I want to be the strong, independent person I was before the brain injury.

 

What do you do when what you want to do, who you want to be, is no longer what you can do or can be?

 

I am not sure what to do next, and I’m trying to be happy with what I have, but I’m not. There is a hole in me that’s so BIG, the disappointment is so tangible, the grief is so pungent, that I feel lost. What do I do next?

 

WHY?

I’ve been trying to stay focused on creating posts that are more about central pontine myelinolysis, what to expect, how to compare it to other brain injuries. I’ve been trying to stay away from writing about me.

Frankly, you can only take so much of listening to someone go on and on about horrible things are in their life. It’s hard living through it too, but most people don’t really care, and they don’t want to feel “bummed” about how bad someone else has it, so I’ve tried to refrain from going on and on about my feelings or my struggles with EPM. Tonight, I have to discuss about what’s going on with me.

So, you might be wondering, what’s wrong?

Today, I was told that the “basic” cognitive testing that I had a few weeks ago, showed that I have significant impairment, but that it’s not consistent. Basically, the doctor felt that my symptoms are being created or exasperated by psychological issues.

I have to say that I agree that stress, fatigue, and anxiety the issues I have worse. Isn’t that true for anyone? Even if you don’t have any brain injury, you’re just perfectly normal, doesn’t stress, fatigue, and anxiety make issues worse?

I’ve never been a strong test taker. Never. I was usually one of the last kids to turn in a test. The last college classes I took, I would run out of time, especially in chemistry. I was usually one of only 4 or 5, still taking a test at the end of the exam period, out of more than a 100 or more. I felt this was because of my perfectionism. In reality, I would just tend to over analyze questions. I would get stuck and read over the same question over and over again because I thought that there were multiple ways to interpret the question.

I have found since I’ve had the brain injury, I’ve had more issues with this. It becomes harder for me to shut off the internal dialogue I have with myself over directions, questions, etc. I will tend to confuse directions for one section of the test with other sections. For example, if you ask me to name all the animals that I can think of, my mental gears start spinning: birds. Well, birds aren’t really animals are they? Aren’t they considered more along the species of reptiles? They have a connection to dinosaurs. Do they want specific animals? Like Robin? Robin is a type of bird. I wish I could look up whether a bird is really an animal. Aren’t animals considered types of mammals? There are marsupials. I wish I could look up the answer. I really don’t want to sound stupid by saying birds if birds aren’t really animals. And what if they want specific animals.  Aren’t animals any living organism? There’s different types of Kingdoms. Shit, I’ve studied this stuff, why can’t think of the right answer? Humans are animals. Maybe I should just say humans. Good answer! My answer is humans. How about insects? FRICK!

SO, that’s just an example of how my mind works in the moment of answering ONE freaking stupid question….and they want me to to name as many animals as possible, as quickly as possible! It’s just not that easy any more. I used to be able to shift gears faster, think through things more quickly, and get to an actual correct response, but I don’t have that ability any more. I get caught, stuck.

Another example, they asked me to count the dots in the following pictures one by one, or maybe they actually said individually. I’m not sure exactly how it was worded. The first problem I have is, is staying focused and tracking the dots. The first group was scattered dots everywhere on a page. There must have been 20 or more. They weren’t organized, and when I started counting them I lost track of where I began, and I wanted to give the right answers, so I double counted them. I thought it was the answer that was important, but it was actually the amount of time that it took that they were monitoring. The next pages they started organizing the dots into groups. My first reaction, well that’s a group of five. There’s two groups of five. There’s three groups of three. It’s a total of 19. Wait, they said count them individually. Maybe this is an illusion.  They have those optical illusions where your mind looks at something and doesn’t process it correctly. Did I miss a dot? So, I counted the dots a second time. No, no I think there aren’t any that I’m missing. Are you sure? Yep, I’m sure. Ok. 19 is the answer.

So, if I had known that the answer didn’t matter, then I would have just blurted out numbers. If I realized that it wasn’t a trick question, I would have been able to respond more quickly. If I had just asked for clarification or asked them to start over once, I figured out what I was supposed to do. Frick!

Trust me. I feel stupid over the testing. I don’t know why that part of my mind is broken. I mean, I did have that problem to some extent prior to the injury, but at some point, my reason would take over, and I would just be able to answer the questions. I would be able to shut down that internal dialogue, and just take a test. At the very least, it didn’t interfere as much as it does now.

In other words, I was never quick at taking tests, but now, I’ve become discouragingly slow. It’s just harder for me to process information, directions, to figure out what I need to do and then do it.

 

I am going to say, in my defense, that I had only had four hours of sleep that night. I really wish that they did testing around the times that I’m normally awake. If I don’t fall asleep until 4 or 5 am, and I’m scheduled to take a test at 9am, I’m practically set up for failure, but they don’t start testing in the afternoon. Two pm would have been the best time for me, but doctors do testing around a typical 9am to 5pm schedule, not a 2pm to 10pm schedule.

So, what does all of this have to do with me?

The testing I did reflected poorly on me, and so my integrity has been questioned.

I am so extremely grateful that I know what my issues are, and that my friends and family believe me and know. My cognitive therapists and occupational therapists believe me and see the struggle that I experience, and they believe me.

It really seems that the testing itself is the only thing that doesn’t work in my favor, but I just don’t think that the tests account for the type of mental distractions that I have because of the brain injury. Well, I had these some of these issues before, it’s just so much worse now.

In the end, getting this news just stresses me out even more, but then I begin to regain my composure. I don’t really care what the tests say. I know what’s going on with me, and that’s what matters. I just have to brush off this bad news and regain my focus. Keep on, keeping on.

I know stress, fatigue, and anxiety complicate my problems, but I’ve always been able to work around those issues. They’ve never stopped me from doing what I wanted or needed to do.

They are causing issues now, and I’ve tried everything I can to control those factors, so that I can become more functional, but they aren’t the cause of the deficits that I have, and it has left me exasperated and frustrated.

Let me give you an example of how people can misinterpret a problem. A man is having a drink at a bar.  He’s chatting with his friends, and as he gets up to go home, his friends stop him and ask him if he needs a ride home. They suggest that maybe he call a taxi. He feels insulted because he’s only had one drink. He refuses the taxi. The next night, at the same bar, he sits down to have a drink. After a glass of wine, he gets up to leave and another person suggests that he not drive home. Again, the man scoffs at the suggestion. On the way home, he gets pulled over by a cop. The cop believes that the man is drunk. The man refuses to take sobriety test. He feels angered at the fact that people keep suggesting that he’s drunk. Since he refused to take the sobriety test, the cop takes him to jail to sleep it off. The next morning, they find the man dead in his jail cell. He wasn’t drunk at any time. He had had a stroke.

How do I feel that this story relates to my experiences? It is not uncommon for people to look at someone with a brain injury and because they do not see any physical injury on the outside, they assume that there is an external cause to the problems that you have. You don’t really have memory issues. You’re just stressed. You have trouble with concentration and reading because you’re mind is creating those problems, because you are focused on issues.

It’s so easy to judge someone when you’ve never experienced the same problem. It’s easier to put on a filter and say that these issues are mental when you’ve never lived with them.

I’ve been told by so MANY people that they’ve forgotten to pay bills. It’s normal. I’ve forgotten where I’ve parked. It’s normal. I’ve forgotten to take my medications. It’s normal.

Yesterday, I couldn’t figure out how old I was! I’m 35, and I forgot. I wasn’t sure if I was 33, 34 or 35. I could not figure it out. I forgot my son’s birthday. I forgot the significance of 9/11 (also my son’s birthday).

THIS is NOT normal for me! This was not who I was before the brain injury. I worked full time. I went to school full time. I took care of the bills. I did NOT have these issues. I’ve never ever had to have an 80 year old man have to shuttle around the parking lot trying to find my car because I couldn’t. I could do advanced math in my head without any issue. I could figure out patterns and trends. I could read through law books, Title 21 of the federal code of regulations.  Shakespeare was like a Dr. Seuss book to me. I could spend 6 to 8 hours reading through legal cases. I could spend 10 to 13 hours studying for the MCAT while working 32 hours or more in a week. What I live with now, IS NOT NORMAL FOR ME! I’ve always lived with stress, but it did not cause impairment.

To have some guy read through one to three tests and can tell me that he has my brain injury figured out, TOTALLY pisses me off. The most brilliant scientists in the world do NOT have a great understanding of how the brain works. They don’t!  Were the tests even designed for a person who has a brain injury? Does it take into consideration that the person has an issue with understanding directions, language, or writing.

I had cognitive testing done BEFORE my brain injury, and I would have difficulty completing tasks in an allotted time. I was able to get the puzzles, etc correct, but not within a standard time frame.

I was told by my cognitive therapist today that I was right. A few months ago, I told her that there is a belief that over time a person’s brain can turn to mush after they’ve had a brain injury. In a person who has had CPM/EPM who lives for longer than a few years, when they move the brain at autopsy, it crumbles. It turns to mush.

When I told my cognitive therapist this, she told me that it wouldn’t happen. (She has been working as a cognitive therapist for more than 20 years. She is an expert.) She went to a conference this weekend, and they are finding that these injuries can kill the brain slowly over time, that the brain can calcify after a brain injury. She told me that I was right.

In the end, what can I do? I have to keep moving on, but tonight, I raised my hands up to God and cried. (I don’t cry often because my immune system causes issues after.) I don’t understand, why?! WHY? Why do I have to live through this? I’ve already had a pretty tough life, but to go through this too! Why God? Why do I have to go through this too?

Can’t I just be normal again? God, I would give anything to have my old mind back! I wish I could just put this whole brain injury thing away! I wish I could get back to doing what I wanted to do. I just want to go back to school, get into medical school, work at saving people.

I wish I knew why.  I wish I could just get over it, as if I was getting over a cold. I don’t think they understand how frustrating these things are for me. I don’t think they understand how strong I am, and how hard I’ve worked, and how desperately I want to put all of this behind me, but it isn’t just a mental thing. It’s just not, and I have to learn how to work with the deficits I have and try to make the best of my life and my abilities as they are. I will continue to work with my therapists in trying to get new connections, with my doctors to get on the right medications, and try to become the closest to my old self as I can. I guess that’s all you can do when you’re living with a brain injury.

 

The moment of Now:

Oh, the beauty of having a brain injury, is that you truly don’t remember what has happened previously.  I have no idea if I’ve visited this topic or not. I’ve no idea.

It’s now over a year since I suffered my brain injury, and tonight I feel myself feeling a bit depressed over the idea that I have not gone farther than I have.

I have so many friends and family members who tell me that I’m just being negative. They tell me that if you think that you aren’t going to get better then you won’t. They tell me that it’s your mindset that influences where you go with your life.

I have to say to them, Screw off. I say that with love, but no one I know has a brain injury. No one. I wouldn’t want them to have one either.

It’s not easy. It’s unbelievably hard.

Do they even know what I go through on a daily basis?

I never know exactly what I said, if I said it, if I did it, if I didn’t do it. My mind does not work!!!!

You get over breaking a toe. You just don’t  learn to “live” with having a brain injury.

You can learn to live without an arm or a foot. You can learn to live with an illness. I had.

I wasn’t healthy before the brain injury, but I could DO things. I could fight through the pain, the fatigue, the frustration, the nausea, the headaches…all the physical issues, I was able to fight through it. I was able to work 60 to 80 hours while being sick. I could go to work and then spend my days off studying for the MCAT while I was sick.

But, when you have a brain injury, well that’s having your mind broken. The chemistry in your brain is screwed up. They way you think is broken. The way you process information is broken.

What good is a computer monitor or keyboard if your hard drive does not work?

A year ago, I had hope that this injury would get better. I have seen some improvements. I am not stuttering as much. I am not walking into walls. Ha, that’s funny! I can’t even remember the things that I used to do when I initially had the brain injury to give you an idea as to how it’s improved.

I think that’s part of the problem. I live in the now. I can not make plans because I can not envision how things will be in a week, a month, a year. I do not have the capability of saying…oh, I can’t do that because I will be doing this instead. Because in my mind, the canvas is blank, the calendar is mentally empty. I can’t say that in a year I will be in medical school or in a year, I’m going to take a vacation.

In my life, there is no next year.

I do not remember what commitments I have until I pull out my phone and check my calendar or reminders.

My son might tell me that he will be going to a party next weekend. Sure, that sounds fine. Right now, that does sound fine. I can’t remember that I wanted to get his pictures taken with his sister. It doesn’t register in this minute of my life. In a few days, I might have another plan set in my mind, like going out to dinner as a family.

Things hit me as a realization….Just now, I realized that Halloween is this week. This triggered the memory that I took off that day off from work. Why did I take that day off? I must have had a reason. I don’t have a costume. I don’t have a party that I’m going to. Trick or Treat is the day before. I don’t know.

This is just one example of how things just happen in my life. I live in the present. I don’t remember the past, and I have no idea how to plan for the future.

In this moment of now, I feel a loss. I feel melancholy. I feel jealous of those who do not know what it means to live like this. I feel ashamed that I feel so bad about the life that I should be grateful for. I feel alone because no one I know shares this life with me. And I feel hate over the fact that this injury was caused by someone else, and that person will be going to sleep tonight without any regard for what I’m living with and what I will have to live with for the rest of my life.

I’ve tried to regain my life. I’ve tried counseling. I’ve tried therapy. I’ve tried medicines. I’ve tried dozens of doctors. I’ve tried just doing it. I’ve tried exercise. I’ve tried forgetting about it. I’ve tried organizing. Now, I have to try to live with it, and to learn to live with it, and be happy with the fact that I have lost everything I was working for before the injury. I have to try to figure out how to make the most of the life that I have now, and to make that mean the most to me.

I figure out there must be a reason, and I pray with time that reason will become apparent so that I can try to make myself believe that this injury was for the greater good.

I’m certain that I am not the only who has a brain injury that feels this way. I know that there are so many people in the world that are living with the same feelings, and with that I have to say despite the negative tone in this post, I still have hope for tomorrow. What can we do but keep on keeping on?

This is a journey and even if the path is rocky, it’s still worth the view.

I can’t do it all:

 

I’ve been at a breaking point for weeks now. It seems like when you think you can’t handle one more thing, five more things are forced upon you.

All of the things that I’ve been going through over the past few weeks are related to having a brain injury, and it has made me SO angry, and so upset because there is nothing that I can do about it.

I’m stuck living with it, and there’s nothing more that I can do to fix it. Don’t get me wrong, I am trying to fix it still. I’ve just started taking several new medications to help with the things like pain in my hands, cramping, shaking, etc. I’m going to start taking medicines for ADHD to see if that will help with my focus, and I will start taking anti-depressants to see if that can help make me happy that I have a brain injury and have lost everything I was working so hard to achieve over the past few years.

You know, I’m just going to say this. I think people, doctors, therapists, all believe that when life hands you shit, you should smile about it and exclaim how fantastic it is and not feel horrible that you’ve been handed a whole load of shit.

If you lose the love of your life or a child, and spend the next few months crying over that, they believe that you need antidepressants. They believe you are depressed. I wonder what people did before they had antidepressants?

They mourned, and it was an expectation. They wore black. They stayed inside. They didn’t participate in normal social activities, but somewhere along the way, we began denying ourselves this process, and began to feel that if you were upset that the man/woman you lived with for 50 years died, that you should start taking antidepressants to help get you through it.

Now, I don’t have all the answers. I don’t. I could simply argue that people would have used anti-depressants if they had them available. We have advancements in medicine that make these wonderful new medicines available, so why shouldn’t we take advantage of them?

But, I think there is a need to find the middle.

For weeks, I’ve been struggling with the stress of dealing with lawyer stuff, family issues, work issues, health problems and then the disheartening realization that I am still unable (at this time) to return to studying for the MCAT. AND it really hit home this week that this totally SUCKS, and it’s completely unfair, and there is nothing that I can do about it.

I have SO much stress directly related to having a brain injury, and it could have been prevented. It SHOULDN’T have happened!!!

No matter what happens, I will never receive enough compensation to make up for what I have lost, and at this point, I don’t think I’ll receive any compensation for what I have lost.

So, I was at my cognitive therapist appointment and tearing up at the idea that they want me to do more there as well. I’m just so fried mentally, emotionally, etc that the idea of doing these worksheets that a 7 year old would have no problem doing about caused me to have a complete breakdown.

And then to make it even worse, my therapist looked over at me and told me that I would need to start taking antidepressants or I would need to give up things that I was already doing or wanted to do. She told me that I needed to stop doing things in order to get better because if I was so overwhelmed when I came in to work with her, then I would not be able to do anything that they needed me to do.

Of course this makes sense. If I’m so stressed out that the thought of doing mental tasks that they require me to do sends me into a tizzy, then they really can’t do anything for me.

This ramped up my anxiety and stress by 80. I mean, my therapist understands me, and she has helped me so greatly over the past several months. She KNOWS and UNDERSTANDS what I’m going through. She has the answers, and she’s a fantastic person and a wonderful friend, and if there is anyone who is going to help me get back to “normal” then it is her.

What am I going to do if I lose her too?

So, I’m left with the choice of going on antidepressants or stopping therapy. There really is no choice. I’ve already made the call to my doctor.

I have to say that even I don’t cotton to the idea of going on antidepressants, I understand why my cognitive therapist wants me to do it. I’m functioning on the edge of about completely losing it every day. She can’t work with that. And, I spend a good portion of my therapy time discussing how crazy my life is and how stressful it is, and that adds extra stress to her life.

As she put it, she sees a younger version of herself in me (sans the brain injury), and it is physically and mentally exhausting to see me make the same mistakes that she made.

In the end, she said, I can’t do it all, and I spent the night wondering what was I supposed to give up. How was I supposed to give something  up? I can’t very well go home, and say to my kids or Tom, well, I’m sorry. I’m unavailable for anything any longer, fend for yourselves. I can’t call the lawyer and say, sorry if you need answers to the questions that you want me to answer, figure it out on your own. I can’t call my disability insurance company and say, too bad if you need medical records, I have brain damage so screw you. I can’t walk into work and say, I’m just going to stare at a wall for the next 5 hours, don’t bother me.

So what am I supposed to stop doing? I have no flipping clue.

That night, I went to my psychologists office, and I’m going through all the same stressful things that I went over at my cognitive therapists office. I was overwhelmed. I am overwhelmed. What am I supposed to do?

Can you imagine my surprise when she told me that I needed to start taking medicines for ADD? She felt that I had a long standing issue with ADD, but that the brain damage has just pushed it over the edge. She believes that taking medicines for ADD would really help ground me and help keep me on task.

At this point, I will try anything. Truly, I think I will try anything. So, I added that to the list of things to see my doctor for. But, then she told me something else, she told me that I needed to give something up, that I can’t do it all. It was hard enough for someone who didn’t have a brain injury to try to accomplish what everyone wants or expects me to accomplish, so I shouldn’t put that extra pressure on myself to be perfect or to do everything that everyone wants me to do.

Here it was, two people, two extremely smart, extremely wise women telling me that I was going to have to stop trying to do everything. I have to accept that I can’t do the same things that I used to do, no matter how unfair it was. I have to stop telling myself, I used to be able to… Having that mentality, holding onto the past, will keep me from moving forward in the future. Wow, right?!

I have to learn to accept and be able to say: I can’t do it all.

 

What was I thinking:

Ok, I hope you can relate to what I’m going to post tonight, but maybe you won’t. Here’s the thing, I really don’t know what’s “normal” or what’s not normal in regards to my experiences after brain injury.

I had another appointment with my cognitive therapist this week, and God bless her (Angela C.) I’m not sure how she does what she does because if her patients are anything like me, then there’s a whole lot of craziness that comes through her door each day 🙂

I really have to give her kudos because I don’t know what her “role” is in my actual therapy. She’s obviously there to help me rebuild or learn to navigate through the changes that have happened after my injury, but I swear I threw a curve ball by asking her about the emotional craziness I’ve been dealing with over the past 10 months. I have to say she not only handled my emotional unraveling with professional grace, but she provided me with excellent advice.

As I mentioned before, she is above and beyond what I could ever ask for, so much so that I both forward and slightly dread meeting with her.

Now, doesn’t that seem a bit contradictory? Nope not really..let me explain.

I love going to my sessions because I know I’m going to get somewhere, make a step forward that I need, but I also end up tearing up about 5 times during our 45 minute to hour long session, and if there’s anything I hate to do, it’s to lose control of my emotions in front of other people.

My last session with Angela was no different, and to make matters slightly worse, I confided in her regarding my somewhat lack of ability to control my impulses.

I developed the brain injury in June, and one of the first issues I experienced with impulse control was in September.

I very suddenly decided to go to Jeffrey’s funeral. (Jeffrey had CPM, and was a very big source of support for those of us who have CPM/EPM.) He died very unexpectedly from an issue related to CPM.

I wanted to go to his funeral, but it was a very long drive and I was not supposed to drive alone because of the neurological issues that I had. It was extremely dangerous, and I was going to be alone. It was overall not a great idea!

But, I decided to go and I went. Well, about an hour into my drive, I thought, it was going very well, and wouldn’t it be great to travel across the country.

So, I called Tom, and told him I wasn’t going to go just to the funeral, and that I didn’t know when I was going to be home. I wanted to visit family and friends and see things that I’ve always wanted to see, like the Grand Canyon.

I didn’t even have more than 2 days worth of clothes with me. I was only going to the funeral and then straight back home the next day.

There are so many absolutely crazy things with that decision, but to name a few; lack of money, traveling alone, not having clothes or toiletries, not knowing where I was going or where I was going to stay….really folks the list quite extensive on why this was an absolutely crazy thing to do. But at the time, it didn’t seem crazy at all.

Fast forward several months, and I was on the way to return something to a store with my son. There was a pet store that was on the way. We stopped inside. I had NO intention of buying a pet, but after an hour, we were walking out with a puppy and about $200 in puppy supplies.

Now, anyone in my family could tell you, this was nuts. I would never spend money like that on a pure breed dog, let alone GET a dog.

The list really does go on and on with decisions that I am constantly making every day that is beyond my old scope of reason, as well as my ongoing dwelling on decisions. It takes me at least 3 times as long to try to make a simple decision.

SO, I was sitting in front of Angela explaining all of my crazy impulse issues, along with my recent sudden decision to end my relationship with Tom, and wanting to know if I was losing it…was this normal? Were these issues being caused by the brain injury or am I losing my mind in other ways?

Now that has to be a hard question to answer.

Of course, I’m distraught. Over the past 10 months, I’ve felt like I don’t know who I am any more. I’m not sure what’s wrong with me. I don’t know if what I’m experiencing is “normal”, or if I’m losing my mind.

Has the brain injury changed me? Or am I changed because of the brain injury?

To me, it’s hard to distinguish between the two, so let me try to explain a little bit more about what exactly what I mean by that.

Having the brain injury change me, who I am and what I think, is something I can’t control. It’s something that I have to learn to manage and live with.

If I have changed because of the brain injury, then I am now making alternate, conscious decisions to do things differently because of some realization that my life is finite or live every day to the fullest type of mentality. I am in control. I am just choosing to do things differently because of the experience that I lived through.

I have always been a  very responsible person. I’ve always made decisions that are in the best of interest in my family or myself, but I am not doing that now. I’m struggling to control my actions or failing completely at controlling them, and this is all extremely stressful to me.

What’s happening?!

This is what I was asking Angela, and it’s a difficult for any person to answer let alone a person who has only seen you 4 times, but she handled the question with great tact, and she gave solid advice…which is why I give her major kudos. If someone approached me with a similar question, I don’t know if I would have been able to give them a great answer.

She does think there is a physical response to the brain injury and issues with dopamine receptors in the brain…and this makes sense because I have other issues with tremors, shakes, jerks, spasms that are also from the brain injury that are also linked to dopamine receptors in the brain.

However, she also said that there is probably a psychological “root” to my current impulse issue which she explained with such extreme accuracy that it makes me think she is psychic. Either she has access to a medical history that I didn’t think was available to anyone, or she is totally psychic because she so accurately described my history that I wondered if she was related to me in some secret way.

I really don’t know how she did it.

That said, she advised me to not make any impulsive decisions for awhile. She told me that I was going to have to tell my inner child, “NO”.

I really think that’s going to be easier said than done.

Now, I’m going to go a little bit more in depth to why I’m feeling especially crazy since the brain injury, and this is something that I didn’t discuss with Angela, but I really think it’s important to bring up before I forget it again.

In the past few months, I’ve had this emotional disconnect from things, and it’s something that I really can’t explain.

It’s this growing ability to get angry quickly as well as feel completely void of feeling at times when I should feel something.

When I was being treated for EPM in the hospital, I felt his overwhelming sense of compassion, understanding and love for everyone, but now, I feel this lack of feeling for things, but I also tend to experience periods of inappropriate tearing.

I don’t really “cry” a lot, but my eyes will well with “tears”. This happens a lot when I discuss personal issues with my boss, which is a time that I really don’t want to be on verge of crying.

Seriously, I have such a lack of control of this at this point. It seems I have no middle ground. Either, I feel nothing, feel completely angry or am on the verge of crying.

It’s such an extreme range of emotions, but the one emotion that I haven’t really felt since having this injury (outside of the hospital) is a sense of love or happiness.

Now, right now, I’m blaming this issue on Tom. I’ve convinced myself that I’m not happy because of the stress in my relationship with him, but I have to pause to wonder if what I’ve always said is true: the only person who can make you happy is you.

If that’s the truth, then why I am not I happy? Why are the only major emotions I feel right now anger or frustration? Why am I so irritable over every little thing? Why am I going pretty much from one extreme to the other? Is this being caused by the brain injury? And if so, how will I get past it?

I do believe the brain injury has something to do with it. I’ve read a lot about how people with EPM/CPM tend to experience a shift in their personalities, but I really don’t remember everything I’ve read about it, and I am finding less and less time to research 😦

That said, I am hoping to look into this further, but I also HATE to make excuses for my behavior. I really believe ultimately that people have control of their decisions, etc and how the act.

I would LOVE your feedback regarding this post because truly this is one of the things that really eats at me. Are you experiencing anything that is similar? Have you noticed changes in yourself or your loved one with CPM/EPM? Are all of the things I discussed tonight just happening to me?

Let me know!

A new MRI for identifying brain injuries:

Did you know that in it wasn’t until 1843 that a physician linked having dirty hands to passing infections?

Click the following link to learn more regarding the history of hand washing: http://www.accessexcellence.org/AE/AEC/CC/hand_background.php

Originally, hysteria was categorized as an ailment that inflicted women after having babies. It apparently caused a host of symptoms such as, “anxiety, nervousness, fullness in the lower abdomen, erotic fantasies, paralytic states and fainting…”

Until the mid 1800’s to early 1900’s, it was believed that a woman experienced these issues because her uterus was “floating” around her body and choking her. Doctors treated it by causing orgasms in women. This was an actual selling point for vibrators. They “cured” hysteria. Use the following link to learn more, http://ije.oxfordjournals.org/content/30/4/904.full

So, what’s my point? Modern medicine and treatments are NEW. We know more about the human body and health than what our ancestors did, but there is still so much we need to learn, discover and understand.

This post is dedicated to a new technology that is in process to help those with minor and major brain injuries. This new advancement is promising as it is supposed to detect actual damage in neuro fibers in the brain. In my earlier blog posts, I mentioned how the injuries related to CPM/EPM are like having a short circuit in an electrical wire. This new type of MRI(High Definition Fiber Tracking) actually detects those short circuits! Where normal MRI’s and CT scans will show inflammation and bleeds, this MRI scan actual shows the neuron damage and can potentially predict how successful recovery will be.

This is exciting news for us!!! This might give us a definitive proof for the cognitive issues that we experience. It might show us how likely we will be to recover and to what extent. YEAH!!

For additional information on the upcoming information regarding this new MRI(High Definition Fiber Tracking) use the following links:

http://abcnews.go.com/Health/wireStory/finding-unseen-damage-traumatic-brain-injury-15830461

The following is a research article written about the MRI:

http://schneiderlab.lrdc.pitt.edu/sites/default/files/Pittsburgh%20HDFT%20TBI%20Diagnosis%20report.pdf

I had to copy the image (below)  from the above link, just because it is that freaking awesome!!

New MRI

I really believe that this technology could greatly benefit those of us who are suffering from the “unseen injury”. Be patient friends, because this new scan will probably not be covered by insurance companies nor will it be offered in the next few months. I’m guessing it won’t be available for another year or more. (If you are interested in possibly getting it earlier, there are research studies being done at the University of Pittsburgh now.)

 

Cognitive Therapy:

Yesterday  (this was actually March 9 but I’m still writing this post :), I met with a cognitive therapist. I had done this earlier in my rehabilitation, but I found it to be a waste of time. My previous therapist worked with people who had major damage. If you read to them three to seven words, then asked them to repeat it, they weren’t able to do it.

I can repeat things back initially, but in five minutes, I can’t remember half of what you said. In ten minutes, I can’t remember 70% of what you said. The extent of this issue varies dramatically by how stressed I am, how much sleep I’ve had, how focused I am, if there are distractions,etc.

This is so stressful to me.

My first therapist didn’t seem to understand my frustration or the variability of in my symptoms.

Because my previous therapist recommended it, several months ago, I bought this really nice journal that I could fit in my purse and carry around with me so that I could keep notes. I did awesome with it the first week to 10 days, after that I have no idea where it went. NO CLUE!

I’ve looked for it. I’ve forgotten about it. Then I remember it and look for it again.

It’s so frustrating because I have no idea where it is, and I wrote down several things that I needed to remember, but now that I can’t find it, I don’t know if those things were really that important or not.

I had expressed to my original therapist that I had no problems with writing things down, but remembering where I wrote those things or what I did with the list or paper is the issue. She suggested the notebook, and as I mentioned above, this was a huge failure for me, and a continuing source of frustration and anxiety.

I wonder what the freak happened to it. Did it enter the Twilight Zone? Did my kid take it to school? Did Tom put it away somewhere? Is it shoved in a dark crevice of my car? (Notice, I how I’ve mentioned every other person as being responsible for it except myself. Despite the fact that I’m the one with brain injury, it is EXTREMELY difficult for me to accept that I am the one who has a deficit.)

You have no idea how much this eats at me. Thank God, by the end of the night, I will forget about it completely until the next time I remember it.

It’s frustrating for me that these things are happening. It’s not just not being able to remember but the frustration of being constantly distracted. I’m at a public library right now, and there’s SO much noise. There’s the ding of the elevator doors. There’s people coughing, talking, flipping through books, even the sound of my own typing is driving me crazy and causing me to lose focus.

I used to be able to study in the extremely busy passageway in the basement of a major university, and I could shut out everything without issue. I could go into my own little world in my mind, close the doors, and concentrate on physics or organic chemistry for HOURS. Literally, I would be able to do this for 8 to 12 hour stretches with just brief breaks. I was like a meditating Buddhist Monk. Now, I have the attention span of a fish, and that might be an unfair correlation on behalf of the fish.

I really thought when I started to see this new cognitive therapist that it would be useless. What could this person do to help me? How could she possibly know what I’m going through? I was very on guard prepared to argue my case on how EPM works and about how reading back simple lists probably wouldn’t help me get to my goal. I felt absolutely certain that because I’ve run into so many doctors who have raised their eyebrows and have doubted my sincerity, this would be just one more person that I would have to convince or teach about my condition.

Yesterday (03/09), I was having a bad day, and I certainly wasn’t at my best.  After my appointment, I left feeling relieved. Yes, relieved! This person gets it. She pulled out a sheet of paper that described what I’ve been experiencing to a T. This made me feel so relieved. I mean she knows what I’m going through. She understands what problems I have, and she’s going to try to help me get back on track.

More excitingly, she understands that I was a very capable, intelligent person before the injury, and she knows what I want to accomplish in the future. She’s looking at me as if I have a chance at still achieving my goals!!

Not only is she looking at me as if taking and passing the MCAT is absolutely achievable, but she worked with someone who was an ER doctor who had a brain injury and granted he’s no longer an ER doctor, but he’s a successful GP. This gave me a huge sense of hope.

I have not had any doctor at this point be able to do that. TRULY!! and I’ve seen dozens of them for this problem, but what she did for me in the two hours that I was there was give me a sense of hope. THIS MIGHT WORK!!

Let me try to explain a bit more about this. I’m not saying the doctors that I’ve seen previously to this point were just a waste of my time or were uncaring(some were, some are absolutely awesome). Some have really tried to assist me, but they didn’t have any plans. They didn’t pull out diagrams and wall maps with a step by step solution on how to get me back to where I was previously.

From almost every doctor, I’ve  gotten a response of: we think you’re going to be just fine. Just give it time.

I’m going to try to give you an idea of how this is such a screwed up way to handle an injury. If someone had a broken leg and you knew it was broken, would you tell them; you have a broken leg. If you wait about 6 to 12 weeks, it’ll heal. Then send him down the road?

NO! They’re right. The leg will heal, but will it heal correctly? No doctor would treat a patient like this. Once they determine the injury, the make plans. They either do surgery, put it in a cast, give the person crutches, and steps on what to expect and how to help it heal. Further, they asses the person over time to determine if they need physical therapy or additional steps to make the best recovery possible. They don’t simply state, well your leg is broken; have a great day.

When I left the hospital, I was walking into the unknown. Up to this point, I did not have anybody who said, this is what you need to do or I can help you get to where you want to go AND she knows where I’m going. She knows what I want to accomplish. She understands that I’m not just wanting to be able to sit down and read a book without forgetting what I read the day before; she understands that I want to be a doctor and that I need to have the ability to think on my feet.

So, what does this mean. This means my friends, Don’t Give Up!!! It’s been 9 months since I received this injury, and it’s been extremely difficult, but you don’t know what lies ahead, and you don’t know what’s going to happen next. Or if the next doctor’s appointment, is going to give you the person you need in your life who will reach out their hand and help you get to where you need to go. HAVE HOPE 🙂

Finally, I want to leave you with the information that my new therapist has given me because if it doesn’t hit the nail on the head, I don’t know what will.

Ok, folks, I spent over an hour trying to find a link to this doctor’s book, but I couldn’t find it, so I’m going to list some of the information from the pages that my therapist gave to me:

Excerpted from: “The Unseen Injury”, by Thomas Kay, Ph.D-neuropsychologist:

Statement of the Problem- We (a group of rehabilitation specialists in NY University Medical center) discovered that these patients appeared fine until they attempted to resume their responsibilities at home or at school. When they did so a significant number experienced great difficulty. They complained of inability to remember, concentrate, organize, handle a number of tasks at once, and get as much work done as efficiently as they used to. Their relationships with family, peers, and bosses often suffered and they developed psychological problems. their doctors were unable to find anything wrong with them and they were thought to be having psychiatric problems-or worse yet, to be faking.

Diffuse Brain Injury- there is evidence that the subjective complaints and cognitive problem encountered by some persons after MBI, may have an organic basis. This microscopic stretching and tearing occurs because of mechanical forces. (In toxic and hypoxic injury, nerve impulse transmission maybe interrupted/damaged).

Because of the very nature of diffuse MBI, the resulting deficits are not specific to particular domains of cognition (such as language, perception, etc.) Rather, it is the overall speed, efficiency, execution and integration of mental processes that are disrupted in a general way.

Nature of the Deficits- A.) Speed and capacity of information Processing persons with diffuse MBI process information less quickly. They react less quickly, especially when faced with a choice, and simply take longer to mentally process most tasks. This goes hand-in hand with a reduced capacity to process large amounts of information at any one time as fewer details can be handled simultaneously. The threeshold for becoming overloaded with amount or speed is significantly lowered.

B.) Complex Attention Most persons with MBI have great difficulty splitting or shifting their attention among tasks, and can not efficiently execute complex operations that require multiple simultaneous in temporary abeyance. Similarly, flexibility of thinking may be reduced. there is a failure to shift to a new strategy or grasp alternative solutions, when the one presently being employed is unsuccessful. As a result of the above difficulties, there is often a decrease in complex problem solving.

C.) Learning and Memory: Additionally, failure to effectively sort out, organize and quickly store complex incoming information often leads to “missing” obvious details, or the inability to recall accurately and becomes experienced as a problem with “memory.” As a result, it is much more difficult to learn new routines, or large complex amounts of new information. There is great difficulty storing and retrieving NEW information. This may be auditory information, visual information, or both. Old information is intact. Most commonly, there is also a deficit in the spontaneous recall of newly learned information.

D.) Integrative and Abstract Thinking   Because of its highly intergrative nature, there may be deficits in the quality of abstract thinking. The ability to spontaneously make connections between ideas may be impaired and interpretation of the statemetns of others may be either overgeneralized or too concrete. There may be difficulty expressing thoughts concisely and accurately. Ideas may be expressed in an imprecise, roundabout, wordy manner. It may be difficult to find the right word resulting in deliberate speech with numerous pauses, at times, “talking around the word”.

E.) Executive Function  The process by which we plan, organize, initiate, monitor and adjust our thinking and behavior. The person with deficits in executive functioning may have difficulty setting realistic goals. They may be unable to efficiently plan and organize their thinking or behavior and this may manifest itself most dramatically in new and unstructured situations. they may be deficient in initiating new activities, once they are planned, and may be misperceived to be unmotivated. They may fail to notice when their performance is off. They may act impulsively or erratically, having difficulty modulating their behavior. Finally, executive deficits may take the form of failing to complete tasks as things are abandoned and never brought to completion.

F.) Emotional and Behavioral Control    Damage to the orbital under sided portions of the frontal lobes, and basilar and medial aspects of the temporal lobes, can result in the disruption of emotions and behavior. There is a disruption in the balance between lower emotional impulses and higher rational cortical control due to the disruption of nerve connections between these two areas. Emotions may suddenly erupt. The person may seem irritable.

There you have it folks. This describes me almost perfectly. I really would recommend that if you are suffering from a brain injury to print out this post and take it with you to your doctors appointments, give it to your friends and family, etc. I think it helps for them to realize, you aren’t making these things up. It’s coming from an outside source, a legitimate neuropsychologist.

I also want to stress that this does not mean that you will have all of these issues or that you will develop them in the future if you haven’t developed them as of yet. Keep in mind this is to give you an idea as to what has been seen in brain injuries.

Hope this helps!

 

Update:  This person found my site and after reviewing it, I really found the information extremely beneficial. I recommend checking it out: http://brainhealthresources.wordpress.com/2012/05/09/there-is-help-for-battered-athletes-and-tbi-patients/

Dystonia (cramping):

I’m struggling with what to approach or how to approach it.

I’ve covered in some detail how CPM/EPM is caused and what parts of the brain are effected. I could discuss in more detail what areas of the brain are known to be associated with certain symptoms. However, there is a lot of mystery still surrounding how damage to the brain will cause a specific symptom.

I could discuss in more detail how the damage occurs (pathogenesis).

I could discuss who are some doctors to reach out to (right now this list is rather short). I could discuss prognosis or go into more detail on symptoms.

There’s also the social support. For instance, if you are like me, you might not have returned to work full time or may be facing ongoing disability.

How do you get started with SSI or social security disability?

There’s the legal ramifications.

One of the problems I’ve had with this injury is making decisions, so my attention becomes fragmented.

I guess there’s no wrong way to scramble an egg, so I’ll just choose something.

Dystonia.

I don’t think I’ve gone into great detail regarding this issue, and if you’re reading this you’re in for a treat. 🙂

Dystonia is painful involuntary muscle contractions caused by a neurological (brain/spinal cord) issues.

There’s two types of classifications for dystonia: focal and generalized.

Focal dystonia generally effects a smaller, single area. For instance, you may have focal dystonia of your hand. Most of the time it is in one hand at a time. So, it’s not like both of your hands will cramp at the exact same time. It generally effects smaller muscles, like those of your face or neck.

Now, something, I did not know is that something like writer’s cramp is considered a focal dystonia.

(That said, guess what I’ve developed since having EPM. I’m getting it in my hands and feet.I know, really another symptom, but yes. It hurts when I type or write, especially for extended periods. Of course, I used to have this before I had EPM too (who hasn’t experienced writer’s cramp at some point in their life), but I never had it daily like since I’ve had EPM.)

I think the following video shows how minor these focal dystonic neurological issues might seem. In a lot of videos that you see online, dystonia seems to be extreme cramping, but that’s only in severe cases. It is in most cases, especially early on without treatment not as noticeable except for to those who are living with it. Please don’t take that to mean that this issue is not painful or abnormal.

http://www.youtube.com/watch?v=T7OpC9-Gd9g

Like everything, stress and fatigue tend to make these movement based issues worse.

I think what’s unusual with dystonia that’s caused by EPM, it tends to effect more than one area, not at a single time, but you can experience radiating cramping through out your body. So from the first week that I developed this, I would experience a pain in my hand, 30 seconds later I would have it in my foot, 30 seconds later it would be in my thumb, then my back. It was just constant circulating pain. It’s now become the cramping and stiffness as described in the video above.

In most neurological cases of dystonia, you will have a primary problem and over time you will develop the cramping in other parts of your body.

I believe dystonia also causes the swallowing issues that are associated with EPM/CPM.

Possible causes for Dystonia:

Sometimes dystonia is but one symptom of a more pervasive disorder that affects the basal ganglia, such as:

  • Parkinson’s disease
  • Huntington’s disease
  • Traumatic brain injury (ie, CPM/EPM)
  • Stroke
  • Brain tumor
  • Oxygen deprivation
  • Infections, such as tuberculosis or encephalitis
  • Reactions to certain drugs
  • Heavy metal or carbon monoxide poisoning

The above information comes from: http://www.mayoclinic.com/health/dystonia/DS00684/DSECTION=causes

Now, generalized dystonia impacts Larger muscle groups in the body, such as those of your back and abdominal wall.

Check out this video for a woman who is living with generalized dystonia:

http://www.youtube.com/watch?v=neCpWlDQhGQ&feature=related

Again, please note, that not all cases of dystonia are that extreme, and they may not be permanent distortions but like with seizures, you can have cycles to it. It does become worse with activity and movement of an afflicted part of the body.

I do recommend the Mayoclinic website that I cited above to get additional information on dystonia.

I hope this gives you an understanding as to something you might experience with CPM/EPM. Hopefully, it brings you peace. If you are experiencing what I’m experiencing with the medical profession, you might feel a little less crazy by reading this. 😉

God Bless!

 

CPM/EPM: Count your blessings:

I realize that if you are reading this, then you have most likely been impacted by hyponatremia and/or CPM/EPM. For that, I am sorry. With the information I have found in the months since I was injured from it, I am absolutely certain that this can be avoided!

If you haven’t been impacted by it yet, thank you for being proactive in learning about it. As you age, you are more at risk for it, and it becomes more likely that you will have a more difficult time recovering from it. To put it bluntly, you are at an extremely high risk of perishing from it, the older you are.

I guess that’s true of everything, but if you have knowledge of what this is and how it should be prevented you have a better chance of surviving.

One day, I hope that awareness will become so universal that hyponatremia and CPM/EPM will be prevented from ever happening. Please make this one of your missions too. It takes just a few seconds to hit the “like” button or to send this link to your friends or family members. Getting the word out is what will save lives!

So, if you have been impacted by hyponatremia, I hope you aren’t facing CPM/EPM. In my previous posts, I listed the symptoms that impact most people who are injured.

I also touched briefly on the widely unknown measures that can be used to reverse the consequences of having your sodium levels raised too quickly and the widely unknown treatment options.

If you are not one of the ones fortunate to escape the devastating harm of the brain injury, I want to stress to you; you are not alone! As long as I’m able, I will try to help you.

I find one of the hardest things to do when you’ve been inflicted with CPM/EPM is to count your blessings. When I was diagnosed with it, I felt vindicated. I had returned to the hospital that had treated me 3 times to try to get help. I won’t go into great detail here regarding my story, but I was basically looked at as if I was on fire. I was turned away from the ER twice with the diagnosis of a migraine, and the third time I went back to the same hospital (with significant impairment), they wouldn’t do the MRI that I needed and requested. Instead, they wanted to admit me to the  hospital for further observation.

As I mentioned previously, CPM/EPM can be life threatening. I was demonstrating obvious problems, something akin to having a stroke, and they weren’t taking immediate action. I decided to go to a different hospital at that point. I hoped the bigger more prestigious hospital would be more equipped to handling the situation, as well since they didn’t cause the problem, so they would be more likely to diagnosis a problem they didn’t create. I was right.

When I found that I had CPM/EPM, I was terrified. When I had started to develop my first symptoms, swallowing issues and speech problems, I knew what was wrong, but I didn’t know very much about it at all.

I had just read the generic stuff online, and it was pretty scary. It said that I could go into a coma, die, or develop locked in syndrome. Once I knew I had EPM, each day that I woke up, I felt more and more grateful.

I’m alive and I’m not a vegetable. At the same time, I was absolutely terrified because these new changes were significant.

How would I be able to survive as this new me?

My doctors and my friends and family were incredibly optimistic, but as they saw improvements, I saw the differences, the changes, the difficulties.

I have to say with 110% conviction, IT IS EASIER FOR THEM TO SAY IT!

You are LIVING it. That said, I AM living with it too, and I can tell you with absolute certainty, unless you die, you will see improvements. It’s a matter of degree.

I can not guarantee that if you were in a coma for 3 weeks or suffered from locked in syndrome for 6 weeks, that you will ever be running marathons or even doing basic math in your head, but you are here and you are important and you can expect improvements.

Give yourself time, and continue to do what you’re doing, making an effort to get yourself help and to find support. Contact me if you need me.

There are online support groups that can help you. You can find people, normal people, struggling every day with the same problems you are, and there is nothing better than to know you are not alone.

Your friends and family probably don’t get it, and frankly, most of them don’t want to hear about it. Don’t judge them for that. In most cases, they just don’t know what to do or say. Seriously, before you became ill, would you act any differently?

That said, I know a few people who have it. I consider you part of my family if you have it. You have a private pass to my club. 🙂 And I will do anything I can to help you.

So, now you have one more  blessing to add to your list.

Here’s the thing, if you do have this, and you are like me. You’ll feel better knowing that there is at least one more person out there who has it. You aren’t completely alone, but that only goes so far. It doesn’t take the sting out of not knowing how YOU will be impacted by CPM/EPM.

Frankly, it’s depressing. It’s scary. It’s hard. I was diagnosed six months ago, and I’m still having issues. TRUST ME, my symptoms have improved greatly from where I was, but not being 100% back to my former self is difficult.

Trust me, there are days when I do cry. There are days when I want to go back to the hospital that treated me, and I want to SCREAM at the doctors.

I’m giving you permission to be angry, upset, cry, yell. It’s a benefit of being a member of my club, BUT what I refuse to let you do, is give up. You are not allowed to give up or give in, NO MATTER, how desperately you want to.

Further more, if you ever feel the urge that you just can’t handle it another day. You’ve had all the twitches and stutters you can take, I want you to promise me that you will get help!

You have to promise me that if one day becomes just too difficult to take that you will go to an ER, call a friend, and/or click on the link below:

http://www.ulifeline.org/main/page/53/SuicidePrevention?gclid=CI6dzPXYya0CFcvCKgod-F6sIg

You can actually seek help via online chat:

http://www.preventsuicide.us/hopeline-new/aliveim/index.html

You can always reach out to me as well. I’m here for you, and I KNOW how it feels.

With my next post, I promise to bring more information regarding CPM/EPM…like maybe how the symptoms can impact you or the doctors that you can reach for more help, experts if you can consider them that (they have at least heard of it).

Many blessings!

Post Navigation