Chronic Pain of the Brain: #ChronicMigraine, If only I Could SCREAM!!

For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.

Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.

But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.

While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.

Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.

When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.

This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.

Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.

If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.

******************************

Migraine.com Statistics:

In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.

Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.

Migraines cost the U.S. more than 31 Billion per year in healthcare

Only $19 million goes into researching migraine disorders

~Find me at @aBodyofHope on Twitter

www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions

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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 11 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Four years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 4 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on June 28, 2015, in Chronic Illness, Chronic Pain, Medical Research/ Treatments, Migraine and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 7 Comments.

  1. This is such a good point most people don’t remember: “Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes.” This is why it’s so important that we all support each other even if we don’t suffer exactly from the same conditions. I am definitely sharing.

    Liked by 1 person

    • Thank you so much for sharing and for your support across the chronic illness community.
      Because everyone’s journey is unique, we can all encourage each other in unique ways like you encourage me. ❤

      Liked by 1 person

  2. Your description of “chronic pain in the brain” is so spot on. I’ve had cluster headaches and hemiplegic migraines for years now, and neurologists brush them off so quickly. The fact that “headache” has become such an innocuous term is so frustrating- it’s hard for others to understand that there are certain kinds of headaches that are completely debilitating. As always, thank you for such a thoughtful post and for spreading awareness of a misunderstood condition. Thinking of you and sending spoons and hugs 🙂

    Liked by 1 person

    • Thank you so much for your thoughtful comment! It helps to know I am not alone, even though this non stop pain can make me feel that way at times.
      I am still so new to this ongoing head pain and cluster headaches. Having a headache once in a while or a migraine now and again (like most people) is a far cry from being disabled by them! That is the biggest hurdle 😦
      I have never written about my personal experience with head pain even though it is more disabling than any of my pain conditions; so thank you very much for being so encouraging.
      Thank you for those spoons! I’ll use them right now 😉 Soft hugs right back to you xo

      Like

  3. I have no words that could even come close to helping you with such grueling, spiraling, pain. I have only had a spinal headache after a spinal procedure once and could not imagine day after day on top of the RSD pain. Your strength and determination just is amazing considering what your body is pummeling you with on a constant basis. I can only say, I have tears thinking of what this must be like for you. Know my prayers and friendship are sent your way and just wish I could do more. That artwork looks spot on in what you must be going through. Sending a gentle hug

    Liked by 1 person

    • Thank you very much, Kathleen. Your compassion and understanding mean so much. Most people don’t understand what it means for the pain to never end. I hate that you are in constant pain from RSD/CRPS, and yet I’m also thankful you are in my path.
      I have never blogged about my experience with my head pain before this. I am so thankful you left your warm comment, you are such a blessing.

      That’s how mine began- from a spinal procedure, and it only got worse over time (probably because of my CRPS). I’m an anomaly though, and don’t like scaring people away from getting treatments that might help.
      Thank you again for your message, Kathleen. Hugs and extra spoons xo

      Like

  1. Pingback: How Do I Rid Myself Of Migraine Headaches ? - Issue # 172/3 | FruitsMax

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