Showing posts with label migraine. Show all posts
Showing posts with label migraine. Show all posts

2018/01/04

Lazy Day at Home


I've been fighting a migraine most of the day. They are always the same. Smells and light feel to strong and to bright... I feel painfully aware of them. The smell of something I would usually find pleasant now hurts and makes me wince and makes my breathing hitch because the more I smell the worse it gets. The pressure builds around my left septum and up through the left side of my head and as it feels like everything is swelling, I feel the vision fade. As the pressure builds up, I watch my vision in my left eye fade and more towards my nasal cavity ... so that looking straight ahead can make seeing anything on the left side impossible with only a little visual help from my right eye. I haven't used Relpax in awhile, but I eagerly sought it out today. In two hours I decided I needed another tablet and my vision was so screwy and the tablet so well protected in its tight sheath that I was unable to open it. I was able to have the second dose only after using scissors to try and break it out and when that failed, the small child I was watching opened it for me. (It is a bizarre testament to the strength of the packaging that nothing I could do opened it, but a six year old child with nails opened it with ease.... and yes, I showered her with gifts afterwards.)

I am so grateful that I was able to stay home today. If I had gone and had to drive back in the storm I am not sure I would have made it home safely. The opportunity to end this day sitting in the dark watching the blizzard outside from the warmth of the couch. The words 'bomb cyclone' sounded really scary... and I think it would have been if I had been out it in... but I feel safe and warm inside my home. I have so much in my thoughts right now, but I have much to be grateful for too. I hope for all to be warm and safe tonight.

2014/07/07

Journey Forth #3 : Celiac Disease and its Ties to other Auto Immune Disorders


Not to start a post with a warning, but I will say that this post will be unpleasant... or maybe even boring depending on your life experiences. I think the topics and the information are really important though so if you are still willing, let's continue our travels. :)

In previous posts, we have discussed the basics of celiac disease, treatment and lifestyle, as well as skin problems that can go hand in hand with the disorder. For the next little bit, I wanted to talk about the numerous auto immune disorders that many patients may have to deal with as well. Because if there is one thing that seems pretty consistent, once you have one autoimmune disorder, your chances of developing another one are pretty high. Risks for several other health problems are pretty high as well and so I think it is important to acknowledge and discuss them for two reasons. One is that many people do not understand or have the knowledge of how these disorders do go together and are then unable to have themselves tested and utilize their medical providers for a full treatment of their symptoms and therefore, to be able to have the best quality of life they can attain. Someone who has celiac disease may attribute strange symptoms to that disorder and not discover and treat the other disorders that ail them. The opposite is true as well and someone with diabetes or severe arthritis may treat that disorder and not recognize that their disorder is so challenging because they also have celiac disease. This knowledge allows them to get tested or if they wish instead, to follow the gluten-free diet for a few months and see how it affects their body and the symptoms from the other diseases. Another important reason to discuss these disorders isn't just for those who need the information personally, but also for their friends, relatives, caregivers, etc... Knowledge is power and creates an awareness of challenges which in turn creates empathy, understanding and advocacy. As the Father has asked us to 'mourn with those that mourn', this insight helps all of us whether affected or not to not only help people as we meet and befriend individuals, but to also not hinder them accidentally in our ignorance. That is my hope any way!

I have not put these disorders in any specific order and so their listing is random. Signs, symptoms and their links to celiac disease could actually take a page or two for each one so I will out of necessity be fairly brief on each one and stick with the very basics. The debate on why people are more likely to develop some of these other disorders is still continuing. One of the most common theories is that undiagnosed celiac disease can potentially 'switch' on a immunological mechanism that can then cause some of these other disorders. However it does happen, what does seem pretty clear is that it is pretty easy for a person with celiac disease to develop another problem... and for someone with one of these other problems to 'catch' celiac disease. :)

Other Auto-immune Disorders


1. Type I Diabetes - This is a chronic lifelong condition in which the pancreas doesn't produce the needed hormone insulin or the body cell's failure to respond properly to insulin caused by insulin resistance. This hormone is needed for digestion to convert our food – the sugars, starches, etc... A complicated and chronic disease, this disorder is characterized by high blood sugar levels in the bloodstream over significant periods of time. Symptoms can include excessive thirst and hunger, frequent urination, fatigue and weight loss, as well as symptoms of neuropathy, inability to quickly heal from injuries, etc... Some studies show that as many as 30% of females with type 1 diabetes also have thyroid disfunction (most commonly Graves disease.) This disease if not well managed can significantly limit the individual's quality of life and usually lowers life expectancy as well.

2. Addison’s disease - a rare autoimmune disorder in the general population, this disease is characterized by insufficiency of the adrenal glands. The body depends on hormones developed by these glands and when enough hormone isn’t produced, the cells in different parts of the body respond; symptoms many include skin darkening, low blood pressure, muscle weakness or pain, hypoglycemia, joint pain, and neurological symptoms including depression and irritability. Other common complaints are nausea and vomiting, abdominal pain, salt cravings, body hair loss as well as weakness and fatigue. In bad cases, this disorder can become life threatening and cause death.

3. Crohn’s disease – most commonly characterized by chronic inflammation of the gastrointestinal tract- most commonly affects the ileum and the beginning of the colon. Symptoms may include diarrhea, rectal bleeding, abdominal cramps and sensations of incomplete evacuation as well as constipation or bowel obstruction. Other common complaints may be fever, weight loss, amenorrhea, fatigue and night sweats. One characteristic of this disorder is that it affects the entire thickness of the bowel wall although it has been known to skip areas… so that there can be a small area of perfectly healthy bowel surrounded by diseased and damaged tissue. (The symptoms of ulcerative colitis are similar, but these disorders are not the same and the areas affected by each are different.)

4. Hashimoto's disease – (also known as autoimmune thyroiditis) An autoimmune disorder of the thyroid that causes inflammation of the gland, but less hormone production- it is actually one of the most common thyroid disorders. Symptoms include fatigue, amenorrhea, intolerance to cold, enlarged goiter, weight gain, skin and hair that is dry and course, a hoarse voice, and neurological problems including forgetfulness, depression and anxiety. This disorder shares a common genetic disposition with celiac disease and some studies show that as many as 4.3% of individuals with this disorder also have documented celiac disease.

5. Graves disease - The most common cause of hyperthyroidism, this autoimmune disorder results in over production of thyroid hormones. Those individuals who have this disorder can suffer from a multitude of symptoms with include both physical (fine tremor, weight loss, enlarged thyroid, infertility, eye discomfort and vision changes, irregular and rapid heartbeat as well as skin abnormalities , etc...) and mental health challenges (anxiety, psychosis, mania, irritability, depression and personality changes.) Some studies show that around 4.5% of individuals with Graves disease also have celiac disease and the thyroid dysfunction most commonly caused by this disorder can cause a worsening of glycemic control and an increased needs for insulin helping to cause an individual to become diabetic or to make their diabetes significantly harder to control.

6. multi focal leucoencephalopathy – A rare disorder that causes damage to the myelin sheath on the nerves in the brain- a tissue that protects and covers all the nerves in the body. The damage causes the axions of the nerve cells to have difficulty communicating with each other and even the inability to do so. The symptoms are diverse due to the fact that this disorder can affect any nerve in the brain... which helps control the nerves in the rest of the body. Some common symptoms that are described by patients are clumsiness, headaches, memory loss, progressive weakness, visual changes, as well as speech and personality changes. This disorder can lead to disability and death.

7. Multiple sclerosis – It seemed fitting to follow up the last disorder with this one. MS is a disease in which the myelin sheath around the nerves is damaged, but the damage is not really restricted to the brain. Affecting the nerves throughout the body, communication and normal response between the nerves and their organs is interrupted and over time the nerves themselves are damaged. While the patient may have periods of time where the symptoms lessen, this damage is permanent. Symptoms include fatigue, tingling and pain in extremities as well as numbness and weakness. Patients may complain of double or blurred vision, problems with speech as well as tremors and a lack of body coordination.

8. Scleroderma – This is an auto immune disorder that is usually classified into two separate forms- localized and systemic. Affecting the connective tissue in the body, the major symptom in the localized form is hardened and sometimes waxy looking skin. In the systemic version, tissues in many organs may start to become hardened and less able to perform their needed functions. This causes many patients to suffer from high blood pressure and other cardiac problems, heartburn and other digestive complaints, as well as dysfunctions in the pulmonary, genitourinary, nervous, and other body systems.

9. Sjogren's syndrome - This immune disorder is caused by a person's white blood cells confusing and attacking the moisture-producing glands in the body. It causes dry eyes and mouth, difficulty with swallowing or chewing, vision problems, teeth cavities,fever, fatigue, vaginal dryness, dry skin and mucosal tissue, swelling, stiffness and joint pain, and enlarged paratoid glands. In sever cases, permanent damage to the liver, kidneys and lungs can result.

Separate Related Disorders

1. Rheumatoid Arthritis - a disorder caused by inflammation that is developed from an auto-immune response created by the body. Symptoms most commonly occur in the fingers and hands, feet and ankles, as well as the knees and the usual complaints are stiffness, localized heat or warmth, and aching or pain in the joints of the body. Over time, deformity in the joints can become prevalent as well.

2. Hepatitis - a medical term that describes the inflammation of the liver as well as inflammatory cells in the tissues that comprise the organ. This disease can be caused by many things including alcohol and viruses- When thinking of gluten sensitivity, the liver finds itself receiving blood that, instead of having finely digested nutrients, is filled with large amounts of undigested food and other waste products that can be toxic to the liver and cause the inflammation that is characteristic of all types of hepatitis. As the liver tries to deal with the unwanted substances, the white blood cells increase as well as the number of liver enzymes which cause irritation to the organ itself… which leads to the inflammation and permanent damage/ scar tissue.

3. Osteoporosis - A disease caused by weakening of the structure of the bones. As the bones are the body's structural foundation, this leaves the individual at risk for injury. It can be caused by either excessive or minimal bone growth and it usually happens without symptoms for a long period of time. Symptoms include breaking bones (easily), loosing height (becoming shorter) and curvatures in the spine.

4. Infertility, miscarriage and menstrual cycle irregularity – Anytime the body is struggling with a limited amount of nutrients for thousands of needy cells, some are going to get short shrift. And if you think about it, reproduction is really something that is a luxury- something that the body should be doing only when it's healthy and ready. While that doesn't always happen, it is fairly common for a nutrient-starved body to decide that it is in its own interest to not reproduce and so in many women, normal menstruation will stop. This can cause infertility on its own, but a lack of nutrients can also cause the eggs themselves to not be viable. I even found a study that suggested that gluten antibodies and damage can be found in the sperm and semen. Miscarriage can happen due to the inability of the body to provide the necessary energy and nutrition for fetus growth.

5. Epilepsy – A seizure disorder causes by inflammation is the brain (and sometimes the body) that manifests itself in a variety of ways including unusual sensations, muscle convulsions or stiffening, periods of staring and sometimes loss of consciousness – symptoms depend on the severity of the disease and where in the brain is affected by the electrical activity that causes the physical signs and symptoms. It is linked to both celiac disease and gluten sensitivity. Some ideas in the current debate as to why these disorders are linked are centered around calcium deposits in the brain and if the nutritional deficiencies themselves may cause the epilepsy.

6. Gluten ataxia – this term describes a neurological response by the body towards gluten which can cause irreversible damage to the cerebellum- the part of the brain hat is primarily responsible for motor control, balance and muscle tone. Due to the damage, individuals with this problem suffer with a loss of coordination in movement and other gross motor skills. Other symptoms may include dizziness, disorientation, problems with focusing by both the eyes and in thought processes, problems with balance as well as difficulty in swallowing or speaking. These symptoms tend to become progressively worse over time as more and more damage is done. It is linked to both celiac disease and gluten sensitivity. (This diagnosis is also still in the early stages of study with some physicians suggesting it isn’t a separate disorder from celiac disease… or even suggesting that it doesn’t exist at all.)

7. lactose intolerance – One of the few non chronic problems associated with celiac disease, it is caused by the systemic damage to the micro-villi in the intestines that destroys and limits the body's ability to break down lactose. The enzymes that help break down lactose are found in very small qualities in the micro-villi and are destroyed along with the intestinal wall upon gluten consumption. This problem usually resolves itself after a gluten free diet is instituted for a significant amount of time and the villi are able to begin to heal themselves and repopulate their enzymes in the 'brush borders' – also know as the micro-villi. The problem usually returns after renewed gluten consumption and intestinal damage.

8. vitamin / mineral deficiencies – This is a major difficulty for the newly diagnosed celiac and one that can take a significant amount of time and attention by the individual to attempt to repair. As the consumption of gluten causes the damage to the intestines, adequate absorption is limited and less able to be successfully managed. Some common deficiencies in this population are calcium, iron, zinc, many of the B vitamins as well as vitamins D and E. The 'cure' is to take great care to consume only items that have no gluten and, in some cases, to use supplements as well until the intestines are healing well enough to resume more normal digestion and absorption. As deficiencies in many of these vitamins and minerals are needed for normal function of many organs and body symptoms, it isn't really surprising when parts of the body start to fail or find themselves unable to heal and function normally.

A short list of other honorable mentions :)

Anemia, migraines, myopathy dementia, gall bladder malfunction, Raynaud's phenomenon, peripheral neuropathy, pancreatic insufficiency, many forms of gastro intestinal cancers, primary sclerosing cholangitis, juvenile idiopathic arthritis, idiopathic dilated cardiomyopathy, ulcerative colitis, microscopic colitis.... and probably many more that I missed. Whew!

That was a pretty long list... sort of depressing too! But a lot to think and talk about. As far as I know, celiac disease is the only auto immune disorder that I have... although my doctor is getting ready to test for two others. I have certainly struggled with infertility and serious nutritional deficiencies. I have started to show the signs of arthritis and Dry Eye Syndrome which is cause by immuno-inflammation. Otherwise, well I'm pretty good :)

Any thoughts on this? What experiences with yourself and others can you share? Did you read this post and wonder about your own health and the possibility of having more than one disorder when you become introspective and look at your current medical diagnoses? What are your thoughts?

2013/10/11

PTSD, Torture Specific Syndrome and the Varied Effects of Torture


In some of my readings, this week I was asked to look into the symptoms of psychological torture and how they differ from 'physical' torture. The psychological effects of torture are many, varied and while not as easily 'seen' by the naked eye as physical torture... as just as damaging to the victim's mental, physical and cultural health. However, unlike physical torture, psychological torture is harder to define, prove cause and effect, as well as determine whether it has occurred at all. (Maybe that is why more 'civilized nations' such as the United States will use it more than physical torture.... it gives the leaders plausible deniability. It also appears to give the perpetrators the 'idea' of being humanitarian but also getting the results that they are looking for.) So, whether torture was provided by physical means, psychological... or some of both, all have many of the same effects on the person affected. Isolation, for example, tends to produce changed brain function, disorientation, etc.... and has been described to have some of the same effects as a severe physical beating.

Other symptoms can be insomnia, PTSD and other mental health challenges, emotions such as guilt, pain, grief, anger, as well as problems that can bring back the images and feelings inappropriately. Many victims can feel pain in different areas of their bodies (constant or intermittent), migraines / headaches, troubles eating, social and relationship difficulties as well as severe problems with self identity. Delusions and other psychosis can be caused as well.

Unfortunately, it is also suggested by statistics and interviews that the people around the persona affected end up with many of the same symptoms, challenges and negative world views as the actual victim. So torture is not just the destruction and damage to one human life, but several... a bit like second hand smoke.... invisible but quietly making some internal changes that become difficulties and illnesses over time.

Torture Specific syndrome is usually described by four categories of symptoms:

1. impaired memory and concentration
2. sleep disturbances / nightmares
3. anxiousness, depression, physical symptoms that come without any findable cause, such as stomach complaints, breathing and heart problems,
4. other mental health problems such as depression or anxiety

These symptoms appear very similar to me as almost the same symptoms of post traumatic stress disorder and I suspect that these disorders are treated very similarly if not in the same ways. I'm actually a bit skeptical (and the textbook suggests many others are as well) that they are actually different disorders. It seems like they are just slightly different ways to describe the same problem. I wonder if people would feel more comfortable with one name over another.... like some parents did with the terms Asperger's over autism even though they are parts of the same thing. Not sure. Definitely some challenging reading this week. :)

What do you think? If you have been diagnosed with either disorder... which name 'feels' more comfortable to you? Any thoughts?

2011/03/21

A Body-Altering Experience...

I had a body altering experience today. It's still amazing to me that life can really in a matter of seconds alter and twist in such a way that the path you were on has disappeared.... a little like Alice on a path in wonderland with that cartoon broom that sweeps away the path and you find yourself standing in one spot... unsure of where to go, not sure of what your choices are... and recognizing that the longer you stand there is actually a choice in itself. Indecision truly is a decision.

But instead of a mind altering decision, I found a quick way to alter my body structure. I was standing talking to my husband when my son jumped from the top of a calf hutch onto my back. He thought it was fairly funny – my son that is. But I caught him on my shoulders and neck. I am not sure what sound exited my mouth but it wasn't happy. I think it was the quickest way I could have found to totally alter my spinal column and still be able to laugh about it later. So I am going to spend the rest of the day in bed on an ibuprofen high and think about the fun morning I had with Bug... and not follow through on my other plans today. It only took about four minutes to realize that a massive migraine was coming and I was going to be hurting quick.

It feels like I just had a baby a few years ago,.. and now my baby is nine years old, 60 lbs and about 4 ½ feet tall. I am 5'6” and 120lbs.... so my son at his age is almost bigger than me and the games that used to be fun when he was three are really not as much fun. But the glory of life is in the living and in the life changing events that remind us that life isn't for the weak of heart and spirit. While my day is not ending the way I thought it would, it is a good day. I hope it is for all of us.

2010/10/28

Migraines and Women


This week in class we studied three neurological disorders extremely common to women; migraine, Alzheimer's disorder and multiple sclerosis. I wanted to take the time to discuss the basics of migraines but also share a small autobiography from an old school friend who still suffers from migraines. I feel like unless you have truly suffered from migraines (or as my friend mentions sensory disorders and/or autism) you can have no idea what it truly is like and a definition will never been able to truly communicate that information to you. I have only had two migraines in my life and I wouldn't wish them on another living soul. I hope this information is not only informative to others, but also a forum for others to share their experiences as well for the education of my readers.

Migraines can be describes simply as a bad headache- however, that simple explanation really doesn't describe the scope, pain or symptoms of this disorder. A migraine can usually be divided into five separate phases called 'prodrome', 'aura', 'headache proper', 'headache termination', and 'postdrome'. While not every migraine sufferer will go through all five of these phases for every migraine, all migraines will usually have a few of these components. Migraines can also be divided into two types- migraines with 'aura' and migraines without. Symptoms of a migraine attack coming can happen a few hours or even days before the onset of the 'headache' and symptoms are not limited to, but can include irritation, euphoria, depression of affect/mood, intolerance of smell or sound that would usually be acceptable, aura, throbbing, pulse-like or pressure-like pain, as well as nausea and vomiting. It can be brought on by such things as inappropriate sleep, hormonal changes or menstruation, fasting, specific foods, environmental factors, possibly stress and even smoking or alcohol.

Some treatments include light medication such as over the counter pain relievers for mild symptoms as well as caffeine. For migraines that are not as mild, there are some pharmaceutical options that can be given orally, subcutaneously, or intra-nasally that have been shown to help. The most commonly used medications depending on symptoms and patient tolerance include Sumatriptan, DHE, anti-nausea medications, opiates, beta blockers, anti-epileptics, hormones such as estrogen and more. Other individuals use chiropractors, massage and acupuncture to control migraine symptoms.

I also got a pretty good biography from a friend -Renee Wrede- about her history and life dealing with migraines. I asked her specifically because I knew that at least for a while she was having them very frequently. What she wrote is a little long and is only lightly edited for spelling.

My hx of migraines
I started to noticed my headaches when I was little - about age 11. I remember pressing the side of my face against the cold window on the school-bus on the way home to relieve some of the hot throbbing pain around my eye/temple area. My family would tell me to lay down with a cool washcloth - but that didn't seem to help. Sleep and pain meds at the time offered limited relief. My PCP at the time told me that I would "grow out of it" - and seem to doubt my headaches - the sensitivity to light, sounds, touch, smell.

At age 13 I had a new doctor who first used the term "migraine" - he was able to describe my pain in detail - it was very validating. By this time I was experiencing weekly migraines and my family did not seem to believe me. By then we had noticed that cocoa triggered my migraines.

My new doctor prescribed a new upcoming pain med at the time (can't spell it) Toridol? It provided little to no relief.

I continued to experienced horrible migraines throughout school - if caught soon enough I was able to tame it down to where I could still function.

In April 2006 when my neck was broke while working with a teenage client my migraines went into overdrive. I struggled with the pain of the undiagnosed break and the migraines that seem to be a result of the break. Days went by without any relief - I was apply ice to the base of my neck as well as my head and face. I received burns for the cold on various parts of my head because covered ice packs were never "cold enough" so I opted to placing ice packs/bags of ice/frozen veggies/frozen juice cans directly on the point of pain.

I went to ER 2 -3 times a week - which eventually labeled me as "drug seeking" - although my tests always came out negative. I was diagnosed with a "mood disorder" because my pain affected my mood and my ability to work/focus/eat/socialize, etc.

8 months after the break the pain of the break had decreased but the migraines were ongoing. By now my migraines always included limited to no vision in my left eye. Black dots or white shimmering "diamond" images danced around my left vision moments before the pain began. I begged to be referred by a Neurologist - Dr. Good enough.
It was Dr. Goodenough who discovered the fracture in my neck. He also encouraged me to record my headaches and pains.

This was very informative - and helped me identify the migraines from the sinus headaches. It also helped me to identify that my hormones play a HUGE part in my migraines - they appear to cycle around my cycle. And Dr. Goodenough prescribed a daily med Topamax to prevent the migraines as well as a Relapax for when the Monster Migraines attacked. It seem to work - my migraines decreased from daily to 14 a month. Pretty good at that time.

I think my stress level, my physical and mental health continues to play a role in my migraines. I am still triggered by smells and cocoa. Now I experience 2-3 migraines a month. Did I mention that I often throw up when I have a migraine - this was particularly painful in 2006 while my neck was healing.

Despite the pain - it often amazes me how all my senses are brought to a new level - I remember laying on the floor in the dark ER bathroom - the only place that sheltered me of the light, limited smells, and muffled the sounds of the ER - and while I groaned with the frozen peas to my head I thought "I can smell bacon - they must be cooking bacon - God I want to throw up and die!" (They were in fact cooking bacon one floor below!) This is what I call the "superman affect" of my migraines - my hearing, smell, sight, touch are so enhanced that it's painful - I can only imagine that this might be similar to the term "sensory overload" that we often use with children an autism diagnoses. It's intense and it's hell.

I think one friend described migraines best when she said "At first you're in so much pain that you fear dying. Finally near the end you're in so much pain that you fear that you'll never die!"

After the break in 2006 - after the mood disorder and drug seeking labels - I wanted my life to end. The constant pain was too much - I couldn't take it any more. One night at the ER I whispered (I can't speak at a normal level during a migraine) - to the doctor on duty to kill me. "If you care about me - you'll kill me now." The room was dark - my boyfriend stood by my bedside - my connection with friends and family had also been affected by my migraines. The ER doctor laughed (loudly) and seem to take my request as a joke. Little did he know that I had already spoken to family members about custody of my son and possible funeral arrangements.

I can totally understand ending your life when you're in so much pain with no end in sight. I am grateful that a friend suggested Dr. Goodenough - it is frustrating that the ONLY assistance and support I received was from a provider whom I had to seek out. However, now I'm in a better place. Life is good - and I have a hard time believing what life was like 4 short years ago.


If you are reading this and suffer from migraines, please feel free to comment anonymously if you wish. If nothing use, I want to have a better understanding of the problems, but I also want to know how I can help people who are having these problems. Understanding the disorder I think will help. :)