I just don’t get it! (update 5-4-13)

Homer Confused

The more I think of it the more confused I get. Why is Migraine Disease to Stigmatized and why is it not recognized as a the Chronic Disabling Disease that it is? Those of us that suffer this horrible disease know all too well how it affects the mind and the body and how it attacks every fiber of our being. Living with migraine is a challenge, to say the least, and to get others to recognize it as more than “just a headache” is even more of a challenge to say the least. Migraines are rated in the top 20 most disabling diseases in the world and it’s been described as more crippling than having a broken bone. But yet “healthy” people still ignore the statistics and demoralize the illness as being trivial and all in one’s head. Well, it starts in the head but it does affect every part of a person’s body. The pain and suffering people experience with this disease can and has led to cases of people committing suicide because it is too much to cope with-the pain, the stigma and the lack of emotional support from those who are closest to them-spouses, siblings, parents, friends and other loved ones. The isolation alone is enough to drive a person over the edge and then top it with what Migraine does to a person and it’s no wonder that Severe Depression is also a contributing factor. But yet Migraine Disease remains to this day a trivial and non-issue to the public as a whole. A lot has to do with the commercialization of OTC medications that tout being able to stop and cure your migraines. Well, if it were that easy don’t you think we’d all be storming the stores and buying this junk up like crazy? It may work for mild headaches that are brought on by tension and stress, but Chronic Migraine is a complex and neurological disease that to this date is still not fully understood by the medical community. And treatment for Migraines consists of second-hand or “off label” use of many prescription medications that were originally designed for dementia, Alzheimer’s, cancer, blood pressure, seizures, depression, bi-polar-just to name a few. There are no Migraine drug specific medications designed solely for Migraines as preventives.

How does Migraine affect the body you may ask. Here are just a few examples of what a Migraine Attack does to a person as a whole in the 3 stages of a Migraine Attack:

Phase 1-Prodrome:

  • Temporary vision changes that usually go away after 30 minutes (but not always)
  • Temporary loss of vision in left eye or right eye, usually one spot or on one side
  • Temporary blurry vision
  • Seeing bright spots
  • Seeing floating lines
  • Seeing shimmering, colored or flickering lights
  • Seeing zigzagged lines or different patterns
  • Changes often occur in just one eye
  • On very rare occasions, the vision change is permanent
  • aphasia: difficulty finding words and/or speaking coherent sentences
  • constipation or diarrhea (IBS flare ups are common)
  • difficulty concentrating and remembering
  • excessive yawning or sudden fatigue
  • food cravings and insatiable appetite
  • hyperactivity
  • increased frequency of urination
  • mood changes — feeling depressed, irritable, etc.
  • neck pain
  • sleepiness

Phase 2-Aura:

  • Alice in Wonderland Syndrome: a rare form of Migraine aura where the distinctive symptom is a type of metamorphosing, a distortion of body image and perspective, which Migraineurs know, while it’s occurring is not real. “Alice in Wonderland” syndrome can occur at any age, but it is more commonly experienced by children.
  • allodynia: hypersensitivity to feel and touch  to the point that what would be “normal” is painful
  • aphasia
  • auditory hallucinations: hearing sounds that aren’t actually present
  • confusion
  • decrease in or loss of hearing
  • increased sensitivity to hearing-unable to tolerate loud sounds
  • dizziness, clumsiness, unsteady on ones feet-running into things or falling down
  • hemiplegia: one-sided paralysis (occurs in hemiplegia Migraine only)
  • olfactory hallucinations: smelling odors that are not present
  • being more sensitive to odors that are present
  • one-sided motor weakness (occurs in hemiplegia Migraine only)
  • paresthesia: prickling, stinging, burning, numbness, and / or tingling, usually of the extremities or face
  • vertigo: sensation of whirling or spinning, not to be confused with dizziness
  • wavy lines (sometimes described as “looking like heat rising from pavement”)
  • “blank” or tiny blind spots
  • blurry vision
  • partial loss of sight
  • increased sensitivity to light-especially fluorescent lights and bright sunshine
  • unable to tolerate fast movements made on a movie or TV screen
  • phosphenes: brief flashes of light that streak across the visual field
      • scotoma: an area of decreased or lost vision. Some people describe scotoma as being like having tiny blank spots in their vision. Some compare it to tiny snowflakes.
      • unilateral (one-sided) (occurs in retinal Migraine only)

Phase 3-Migraine Attack:

  • headache
  • frequently unilateral (one-sided). The headache can shift from one side to the other, become bilateral (on both sides), or be bilateral entirely
  • often pulsating or throbbing
  • worsened by physical activity
  • duration of four to 72 hours in adults, one to 72 hours in children
  • Because the trigeminal nerve becomes inflamed during a Migraine, and because of its location, pain may occur around eyes, in the sinus area, and the teeth and jaw.
  • confusion
  • dehydration
  • dizziness
  • depression, anxiety, panic
  • diarrhea or constipation
  • fluid retention
  • hot flashes and / or chills
  • nasal congestion and / or runny nose
  • nausea and / or vomiting-or dry heaving
  • neck pain radiates to shoulders and upper back
  • osmophobia-heighted sensitivity to odors
  • phonophobia-heighted sensitivity to sound
  • photophobia-heighted sensitivity to light
  • vertigo
  • intense stabbing behind one eye (occipital Migraines) radiates to temple. Occurs on one side only

Phase 4-Postdrome, or the “Hangover”

  • fatigue
  • lowered intellect levels
  • lowered mood levels, especially depression, or feelings of well-being and euphoria
  • poor concentration and comprehension-may still have trouble finding words or making coherent sentences.

(Reference material obtained by Migraine.com)

Some migraine symptoms mimic the signs of stroke. That is why it’s vitally important that all Migrainers keep a Migraine Diary and know the pattern of their Migraines. Any Migraines lasting over 3 days is considered a Medical Emergency if the Migrainer hasn’t experienced a Migraine Pattern like that before, and immediate medical attention is required. Migraines can be life threatening as they have in the past caused a Migraineous Stroke in otherwise healthy people.

Chronic Migraines are classified when Migraines occur more than 15 times a month and aggressive preventive as well as abortive medications are sought after and applied to the Migraine Sufferers regimen. Chronic Migraine is diagnosed when the following criteria are met:

Has at least two of the following symptoms:

1. unilateral location

2. pulsating quality

3. moderate or severe pain intensity

4. aggravation by or causing avoidance of routine physical activity (e.g. walking or climbing stairs

And at least one of the following

1.  nausea and/or vomiting

2. photophobia and phonophobia

Treated and relieved by Triptans or ergot for at least 8 of the Migraines per month.

Here is quote direct from Migraine.com stating the impact of Chronic Migraine Disease

The burden and impact of chronic Migraine

Studies have revealed data about Chronic Migraine and the difference in the impact of Chronic Migraine when compared to that of episodic Migraine (EM):

  • Based on the MIDAS questionnaire (The Migraine Disability Assessment Test), the impact of Chronic Migraine is significantly greater than that of episodic Migraine EM.
  • Over a three-month period:5
    • 8.2% of those with Chronic Migraine reported missing at least five days of work as compared to 2.2% of those with EM.
    • 33.8% of those with Chronic Migraine reported at least five days of reduced productivity at work as compared to 2.2% of those with EM.
    • 58.1% of those with Chronic Migraine reported at least five days of reduced productivity in household work as compared to 18.2% of those with EM.
    • 36.9% of those with Chronic Migraine reported at least five days of missed family activities as compared to 9.5% of those with EM.

Chronic Migraine and stigma

In a study designed to “characterize stigma in patients with chronic and episodic Migraines, researchers found:6

  • Participants with Chronic Migraine scored higher on the Stigma Scale for Chronic Illness scale (SSCI) than participants with EM.
  • Participants with Chronic Migraine also scored significantly higher on the SSCI than a mixed panel of patients with chronic neurologic diseases; stroke, epilepsy, multiple sclerosis, Alzheimer’s, ALS and Parkinson’s disease.

The more I think the more confused I getSo given the facts and statistics of the impact of Migraine on the sufferer and on the economy I’m still confused as to why people just don’t get it? People see us suffering and so ill we can barely walk or talk right, and when we cannot tolerate light, noise or smell and cannot keep food down, yet they question that this is a real illness? These are the same people that don’t question the validity of a cancer patients illness when undergoing chemo and radiation and the effects it has on them. You sure don’t see people barking at those patients telling them to get out of bed and stop lying around all day and get a job, now do you? You don’t see cancer patients or quadrapaligics being bombarded with requests to do this or that, to get outside and they will feel better, or if you exercise you will feel better. You don’t hear people telling them to stop taking all their meds because it’s not making them feel better fast enough to meet the others expectations now do you? They see us at our worse and knowing full well we feel bad we cannot participate, but yet they continue to guilt us. I just don’t get it. Do you? Do you see them being told to “snap out of it” or “it’s all in your head”? Well heck no. Cancer is an Invisible Illness but it gets a lot more respect than Migraine Disease. Migraines can be more painful and debilitating than Cancer, not to downplay the seriousness of Cancer, but a lot of people recover from Cancer. There is as yet no cure for Migraines so the Migraine Sufferer continues to be in chronic, debilitating pain and with no empathy, respect nor validation from the public that it is indeed a true disease. And then you wonder why we suffer such severe Depression and repressed anger towards those who don’t get it and don’t want to get it. I just don’t get it-why people act this way. And if you do offer words of encouragement to a Migrainer I’d see this post first on what NOT to say: http://ohwhatapain.wordpress.com/2013/05/01/what-not-to-say-to-someone-in-chronic-pain/comment-page-1/#comment-825

I told you to stop bothering me-frustrated kid in bed

We go to any and all doctors imaginable to seek help, to seek adequate treatment. Some of us run into brick walls as there are not that many well-educated doctors well versed in the treatment and prevention of Migraine Disease. More and more lately patients are being “under-medicated” making their Migraine attacks worse by prolonging them and as a result increasing the pain and suffering of the patient. We the patient have to go online and search out the latest treatments and therapies and take them to our doctor to be given a new potential Migraine therapy regimen because the doctor hasn’t tried it or know of it.

Doctors

The insurance companies restrict our Migraine Medications and limiting to what we can get monthly through our insurance, totally overriding a Doctors express written prescriptions when we are prescribed the right amount of medication, and that too results in more Migraines because we’re not allowed to have our allotted prescribed dose because the Insurance Companies are now into the act of playing doctor. Or rather playing God to where we have to have our doctors contact them and plead our case so that the Insurance Companies can “consider” increasing our monthly rations of much-needed medications.

frustrated-faceI get so riled up when I hear of a fellow Migraine sufferer being treated as a drug addict or drug seeker! It makes me want to go ballistic! This is a chronic on-going pain condition, and pain needs to be treated with medication, and OTC medications don’t cut it for us who have Chronic Migraine Disease. We are being constantly experimented on with a mix of different cocktails to see what will work. We have to give it a 3-month time frame for a medication to reach its highest potential to see if it will prevent or reduce the frequency and intensity of the Migraine attacks. If that med doesn’t work it’s on to the next. It can take up to 25-30 years to find drugs that work because there are thousands of “off-label” medications that can be tried as preventives. As for the abortive medications they can become more complicated. For some people Triptans are life-threatening and they cannot be used. So here is where the Opiates come into play. And these medications are used as a last resort because of their addictive shall we say “history”. NOT ALL MIGRAINE PATIENTS ABUSE THEIR MEDICATIONS! Migraine patients know all too well if they use their medication too often and too frequently they will get caught in the “Rebound Migraine” syndrome in which it will take a course or 2 of steroids to break the cycle. But they also know if they overuse the Opiates that they will become addicted, so therefore they are only used when needed. This is where some uneducated doctors and those in the Emergency Room see that when a Chronic Migraine patient comes in for intervention because their medications have not worked and they are in excruciating pain and suffering, many are treated with disrespect as well as treated as drug seekers and get poor if any care. This is where Depression grows by leaps and bounds and can add to the risk of suicide when a chronic pain patient is not taken seriously nor treated correctly and with respect. This will rebound into a vicious cycle-the Migraine sufferer not taken serious by family, friends, loved ones, co-workers and the Medical profession and therefore leads the Migrainer into a deeper Depression that can and often does spiral out of control and if no intervention is enacted it can and has led to tragic consequences.

http://ohwhatapain.wordpress.com/being-treated-like-an-addict/

crying-tearsDepression and Chronic Pain go hand in hand. And it’s not just those who suffer Chronic Migraine that know this all too well. This goes for those who suffer PTSD, Fibromyalgia, Chronic Fatigue Syndrome, Aids, Lupus, Autoimmune Disorder-just to name a couple as there are so many “Invisible Chronic Illnesses'” to list. Depression has been widely stigmatized due to the recent tragic events in Sandy Hook and Colorado. But not all Depressed people go on random killing spree’s. Instead they harbor these feelings inside, they repress them as to not embarrass family, and they end up taking it out on themselves. Sometimes with tragic consequences-they take their own life as they feel they are not valued and not taken seriously.http://www.foxnews.com/health/2012/03/23/severe-headaches-tied-to-suicide-attempts/    http://www.usatoday.com/story/news/nation/2012/10/03/migraine-headaches-sufferers-therapies/1609505/It was estimated that in the year 2012 that up to 70% of suicides were a result from chronic pain. http://www.surgeongeneral.gov/library/reports/national-strategy-suicide-prevention/full-report.pdf The Human Psyche can be very vulnerable when it’s constantly under attack and there is no escape route that they can see but the ultimate one made by too many people.http://www.healthcentral.com/chronic-pain/c/5949/130560/fibromyalgia/ Suicide is on the rise and people need to wake up and see this as a serious Disease and stop Stigmatizing people. Suicide rate has risen for our veterans who come back and feeling out-of-place and often misplaced and they oftentimes suffer PTSD. They are not being treated properly and a lot as a result commit suicide. According to US News the Rate of suicide for military personnel for 2012 hit a record high-349. During 2012, there also were 60 suicides among active-duty members of the Navy, 59 in the Air Force and 48 in the Marine Corps. Throughout the U.S. military, suicides increased by nearly 16 percent from 2011 to 2012, figures show. The Department of Defense has been issuing annual reports that track suicides since 2008, said spokeswoman Cynthia O. Smith. Only 176 (which is 1 too many) died in active service-combat. http://usnews.nbcnews.com/_news/2013/01/14/16510852-military-suicide-rate-hit-record-high-in-2012?lite

crying and anguished faceChronic Pain is no laughing matter. It’s not to be taken lightly nor disregarded or disrespected. Given all this evidence I still have to shake my head in bewilderment and say again “I DON’T GET IT” and why don’t people get it! The public needs to wake up and recognize that not all Chronic Pain Illnesses need to be VISIBLE and to stop stigmatizing these diseases and treat the sufferers with respect and better treatment plans. Doctors need to be better educated in long-term Chronic Pain Management so we can benefit from less pain and lead a more productive life. I belong to a couple of Chronic Pain Support Groups on FB: CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks Around Town. I also follow several blogs and websites where everyone has the same chief complaint-they are not taken seriously, they are not treated properly, they are scorned, disrespected, demoralized, dehumanized, stigmatized and in a lot of pain both physically and emotionally as a result. They are cast aside by loved ones, family and friends who chose not to understand or just don’t get it. I just don’t get it when you try to educate those around you to what is going on all it does is go in one ear and out the other! It’s so frustrating to talk to a brick wall-it bounces off and smacks you right in the face as a result. Your then labeled a whiner, a crier, a complainer and lazy. Totally inexcusable way to treat another human being. It makes me want to pull my hair out. We already feel bad enough as it is-with the pain and all the symptoms that go with it, and we lose friends as a result, we are often left isolated, abandoned and beyond misunderstood. We want to contribute to society and be productive. We want to attend family functions and not have to cancel. We want to go on family vacations, family gatherings, on shopping spree’s and have parties and go to parties. We want to do all this and more but for reasons beyond our control we are stuck in bodies that are Chronically Ill and we fight it for all we’re worth and sometimes it’s a losing battle. WHY WON’T PEOPLE LISTEN TO US AND UNDERSTAND US? I JUST DON’T GET IT.

Frustrated_girl1All we ask is what others give freely to those who are not ill: To be treated w/empathy, kindness, respect, understanding and to LISTEN to us and try to understand what is going on in our life and what is going on. Stop standing on the sidelines and judge us-jump in and help us. Even a small gesture like lending a shoulder or an eye can have amazing results. And to offer to do something without being asked like picking up something on your errands, offering to refresh an ice pack, or bringing a fresh glass of water to keep us hydrated w/o being asked, or reheating a heating pad, picking up after yourself as to not add to the burden, dividing up household chores when the ill person is down and out for a while until they get better, offering to cook a meal and bring it over. There are many things you can do to help out those who are Chronically Ill. But the most important thing would be to understand and not to belittle, criticize or ostracize the person and treat them as a leper and an outcast. We as humans need to have love, nurturing and understanding. And don’t bark orders at us like we’re healthy and expect us to do everything you can do and more because it’s just not possible-not without a high price to pay-more pain.

http://ohwhatapain.wordpress.com/pain-is-not-pretty/

sad20face puppyCall me crazy but I thought to attempt to put out an article explaining things a little better from a patients perspective might have some impact on regular people-that is if they read this blog. Those who suffer as I do will just nod their head in agreement, at least I think so, and they will say “been there, done that, I’m right there with you”. If everyone makes an attempt to better understand those who are chronically ill and come to a better understanding then maybe we can have a harmonious life, or at least be a little more compatible and hospitable towards each other. We don’t need to dehumanize people as that is not the way we were intended to treat our fellow humankind. We are to be loving, gentle, accepting and accommodating, Can we please try to be that way for the betterment of not just the Chronically Ill, but for all mankind in general. And PLEASE stop judging people. Learn to walk a mile in their shoes if needed to get a grip on reality. On the reality of a person who suffers Chronic Pain on a daily basis that is.

happy_faces dog and babyI want to get along with others and be happy when I’m not in excruciating pain. And I will NOT stop fighting these Diseases and I will continue to work with my doctors for better treatments. Until a cure is found, if there is that is, I want to be treated with love and respect. I don’t think that is asking too much. Do you? Don’t you want to be treated the same way as well? We’d all be so much happier wouldn’t we?

In closing I pray for more pain-free days for us-the Chronically Ill and I pray for more tolerance and understanding. Peace and Blessings to you all.

Julie

evangelism-bible-verses-1024x706

Update 5-4-13

 

This is not intended as a Medical site and this does not constitute Medical Advice in any shape or form.

Please consult your family doctor or a medical professional if you or a loved one is going through Chronic Pain and Illness and is showing signs of Clinical or Severe Depression so that they may get the appropriate treatment needed. Speaking from personal experience, when you enter the deep dark abyss of Depression it’s hard to get out on your own. You need help if not by way of Clergy by qualified Therapists who can help you navigate your pain management strategies and therapies. I have been fortunate to have had an intervention not once but twice by a dearly loved close personal friend. On the 2nd time I was so low I needed drastic Medical and therapeutic intervention. If it was not for the intervention of that dear friend I would probably be 6ft under pushing up daisies. Depression is not to be taken lightly nor to be ignored. Those who are in the deep throes of it usually cannot recognize nor want to, the deep trouble they are in and the slippery slope they are trying to navigate alone. DO NOT let this happen.

An do not trivialize the importance of online support. I have met MANY amazing people online who have been a true blessing and a Godsend. I have made many a good friend. I support those that need it and when I’m down I get the support in return. I wish I had turned to online support groups sooner, but better now than never. Thank you to all my online supporters-you are indeed amazing.

God Bless you all.

With much Love, Hugs and Prayers, Julie

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