Full-Frontal With Chronic Migraine

Full-frontal definition: Completely open and honest; candid.

Today is Chronic Migraine Awareness Day, nineteen years ago my migraine disease, turned from episodic to chronic, a stage that it still remains at today. In honor of this day, I am going to give you, a full-frontal of my life with chronic migraine. Completely open and honest, holding nothing back. It won’t be pretty, but chronic migraine isn’t at all attractive.

Let’s begin at the begin again, my life with migraine disease started going very wrong, when I developed Adult-Onset Asthma. I had been treating my episodic migraine very effectively with Propranolol for several years. Unfortunately, beta-blockers and Asthma do not mix and I had to stop the Propranolol. From that day forward I entered Chronic Migraine hell, for the last nineteen years I have not had a pain free day. I wrote about the stigma I encountered from doctors in those first few years. In a blog called, “Advocacy Beats Stigma”. Years that I felt like I was walking in total darkness, unable to find the help I desperately needed.

The first five months after going chronic were some of the most difficult I’ve ever encountered. I was in and out of the hospital, while inpatient I had consults with a Neurologist who prescribed medication, a psychiatrist who prescribed medications and my PCP who also prescribed medications. All in all, I went home with twenty-five different medications. It was a wonder that I knew my own name. I lost my job, our best friends moved away, our oldest son moved out to live on his own. I had a total hysterectomy, was diagnosed with fibromyalgia and became extremely depressed. When I did get out of bed, I sat huddled in the corner of the sofa. I began to have suicidal thoughts. I was in so much pain, physically and emotionally. I began to cut myself, it seemed that no one around me, even noticed how depressed I was. It was like I was a piece of furniture, as long as they had dinner to eat, everything was fine. This was my thoughts and feelings, not necessarily theirs and I now know that depression is a liar. It makes you feel, see, hear and believe things about yourself that just are not true! And my hormones were still out of whack from the hysterectomy.

When I actually made a plan to commit suicide, it scared me so badly that I called my PCP office. I spoke with the Nurse Practitioner, who I knew well, he was very kind and listened to me. He asked me if I was willing to go to the hospitals inpatient Mental Health Unit and I was. He called and set everything up, all I had to do was speak with the intake counselor and voluntarily admitted myself. That was the first step in the right direction, in my chronic migraine journey.  I’m so very happy I took that step and am still here today. Life is precious, despite Chronic Migraine.

It took over nine years to find the right doctor for me, he is not a headache specialist, he is a Neurologist with a subspecialty, in headache medicine, and a Head Professor Of Neurology. I use a teaching hospital and have never regretted doing so. I like to think that the residents that I see on their Neurology rotation, come away learning more about chronic migraine, than they may have. Some of the residents I have followed through their Neurology Internship, to being a full-fledged Neurologist.

I knew Dr. Burger was the right doctor for me when we started talking about preventatives and he wrote the name of three medications on a piece of paper and handed it to me. Asking, “Which of these three would you like to try?” YES! Not another doctor just telling me to take, this, this and this. But a doctor who was willing to work with me on my treatment plan. Now I was getting somewhere. No, my migraine disease didn’t disappear overnight. It’s still a work in progress, I have many, many allergies that make treating my Chronic Migraine challenging, as well as other comorbidities, such as Fibromyalgia and Degenerative Disc Disease. Along with Clinical Depression and Anxiety, Dr. Burger has never given up on me, in fact, he treats all of my comorbidities, except for the DDD.

I have times that I struggle badly, with status or intractable migraine, I’m usually in a fibromyalgia flare as well. During long cycles of migraine, I get what I call “breakthrough” depression. I retreat to my cave, needing the quiet and the dark. I don’t feel much like peopling either. Whether it’s on Facebook, Twitter or in person, I just want to be left alone. During intense pain I have had nightmares, waking myself up, crying, kicking and punching, I can tell you these are rude awakenings for my husband.

For a little over a week now, I have been in a very bad struggle. We’ve had severe, intense thunderstorms, for one period they lasted for three days straight. Then on and off again. With barometric pressure changes being my biggest trigger and the storms containing lightening. This has really knocked me out, my head pain has been very high, as has my body pain from fibromyalgia flare. The only way I’ve been able to get any relief is when I’m able to sleep. Dang it, I’m sick of sleeping my life away! I’ve been extremely nauseous, along with gastric distress, this is very debilitating for me. I get horrible stomach cramps.  Eating is hit and miss, mostly miss. I have been able to tolerate Vanilla Greek Yogurt, peppermint tea, and other fluids.

My nerves feel like they are on the outside of my body, so much so, that I do not want to be touched. For fear that I might fly apart in a million pieces.  My mood is all over the place, sometimes I just want to sit down on the floor and cry. I feel hopeless and defeated.  And wonder, how much more of this can I take? I’m so utterly exhausted, even though sleep is the only way I can escape the pain. A lot of this is depression and anxiety-related, and depression talking, depression never gives pep talks, always the opposite.

Do you know what keeps me going? What won’t let me accept defeat or hopelessness? Why I won’t let Chronic Migraine win? Something that is more precious to me, than anything in the world. If a picture could paint a thousand words ~

family1

I love this bunch to the moon and back!

 

 

 

 

My Disease Is Invisible I Am Not

“When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”
Heidi Cullinan

I live with an invisible disease every day of my life, it goes where I go, eats when I do, or can’t, sleeps when I do or don’t, is with me when I’m in pain, when I’m nauseous and vomiting, when I retreat to the dark and quiet place. It’s with me when I have cancel outings or family gatherings, it feels my despair and sadness at having to do so. And the loneliness and isolation that descends upon me, the times that hopelessness creeps in. You see my invisible disease is chronic migraine, it is always with me. It cares not that I have to cancel plans, or suffer pain, nausea, vomiting, stomach cramps, diarrhea, aphasia, alloydonia, sensitivity to light and sound, feel isolated and alone. It is just doing its job.

Chronic Migraine is an invisible disease, no one looking at me can say, “Ah yes, poor thing she has chronic migraine.” My disease may be invisible, but I am not. I have the same hopes and dreams, that every other well person has. I would love to get up every morning without pain. To be able to fully embrace the day, with no worry of impending worsening of pain. To make plans weeks and months ahead, without the caveat of migraine.  To be the person I once was, chronic migraine has changed me in so many ways. I lost the “old me” nineteen years ago when I became chronic. Medications and constant pain can do this to a person, I had to find a new normal. I am not invisible.

These are words I long to never hear again. But you don’t look sick, Ha, that’s because you don’t know how to read migraine eyes. Your pain level can’t be that high, doctor you need to learn more about chronic pain and how those who live with it everyday, handle it! It’s just a headache take an Advil, would you like me to knock you upside the head with an iron skillet. Then tell you it’s just a little bump, take an Advil? It’s just a woman’s thing, they’ll stop when you hit menopause. Right, and the Easter Bunny is real too! You’re just faking it to get attention. Sure, I love puking my guts out, the feeling of having my head pounded on by a hammer, light searing my eyes like acid, the sound of a pin drop like a gong, my speech garbled, horrid stomach cramps and having to hide in a dark, quiet room. I am not invisible.

Yes, my disease is invisible, but follow me around for a few days, I am not invisible. You will see the signs of my disease, they are not pretty, some of them are even a bit scary. You will see right away, that this is a disease that you would not want to live with every single day of your life. I have no choice, I was born with it, it’s in my DNA. But I strive everyday to live the best possible life with migraine disease that I can. I work closely with my headache doctor to form a treatment plan. My husband is extremely supportive, always has been, and I know that he will always be there for me. Just as I always be there for him. I have a strong support group online in the migraine community and some ties that are as close as sisters. I try very hard to be supportive, caring, encouraging and inspiring to others with migraine disease. I. Am. Not. Invisible.

“There is no exercise better for the heart than reaching down and lifting people up.”
John Holmes


Live with hope,
Roni

Advocacy Beats Stigma

 

“Stigma is a process by which the reaction of others spoils normal identity.”
Quote ~ Erving Goffman

In the last few years, I haven’t encountered much stigma, and to be fair, I don’t work outside the home. Due to the high levels of head pain and other migraine symptoms, I don’t even leave my house very much. But when I stopped and thought about it, I encountered a boatload of stigma, when my migraine change from episodic to chronic. My episodic migraine was controlled very well with a beta-blocker, Propranolol, for many years. I didn’t require an abortive medication. At that time, I hadn’t even heard of abortives or rescue medications. My education in migraine disease was sorely lacking. I had to stop the Propranolol when developing Adult-Onset Asthma, beta-blockers, and Asthma are not friends. After halting the Propranolol, I entered Chronic Daily Migraine hell, where I remain nineteen years later. 

This is when I encountered stigma and remember my migraine disease education was practically nil at this time. Let me list a few situations where stigma played a big part, and I just wasn’t aware of it at the time.

  1. In the workplace, I was working in a Family Practice Clinic staffed by three doctors and owned by the hospital that I had worked for since I was sixteen. These were doctors, and they should have been concerned, caring, and compassionate for a co-worker who was so ill. None of that happened. They tried to fire me while I was in the hospital. Human Resources told them that they couldn’t do this. So they devised another plan and had it all in place the day I came back to work. My orders were to report to the Office Manager at the end of the day and give her an accounting of the tasks I had completed that day. They couldn’t fire me due to my illness, but they could fire me if I were deemed incompetent of doing my job. The first two days I couldn’t find the office manager anywhere in the clinic, when pulled into a meeting the next morning, and asked why I hadn’t checked in with the office manager. I told them that I had been unable to find her, to which she replied, she had been in her office. She flat out lied. They fired me because of this; I was devastated. A small side note: One of the doctors was extremely unkind to me. Since that time I discovered, he started having migraine; I wouldn’t wish this on anyone. (but might I say Karma is a bitch) Had an affair with his office nurse, the other two doctors bailed on him, and he is no longer working for that hospital system, he is now the doctor at our local Women’s Correctional Facility.
  2. My PCP at the time, I believe, didn’t know what to do with me anymore. Started getting rather snippy with me. He put a note in my patient chart saying; I was a “possible drug seeker.” While he was the one who started giving me the shots of Demerol, which helped. If you’re getting something that helps your pain, wouldn’t you ask for it when you’re in pain again? Of course, now I know that opioids are not the right treatment for migraine. I was forced to get a new doctor.
  3. An ER doctor told me it was my fault that it took so much pain medication to resolve my pain. As a side note, I never go to the ER for a migraine attack any longer. The treatment plans my head specialist, and I have worked together on, gives me the tools I need to use at home. 
  4. The first six months after I went chronic where horrible. I lost my job and was diagnosed with fibromyalgia three months later. When I asked my PCP if there was medication or treatment to help with fibromyalgia, his reply was to take hot showers. (this was the PCP whom I ended up firing) I also had a total hysterectomy, our best friends moved away, and our oldest son moved out. I was in so much pain, with no help or hope on the horizon. I became extremely depressed, when I did make it out of bed, I would sit huddled in a chair. I began having suicidal thoughts. When I made a plan, that scared me to my toes! I called my doctor’s office right away. And voluntarily admitted myself to our local Mental Health hospital wing, this was the best thing I ever did for myself.
  5. I’ve had doctors tell me that I was too complicated for them. One Neurologist practically killed me. By stopping all the medication that I was on, including an MAOI, which is supposed to be weaned off of and started three new ones. For the first week, I thought I was going mad, and my mood was all over the place from extremely mad to crying over nothing. After six months, he didn’t know what to do with me either; he started me on Ritalin as a hail Mary, his words. I tried a couple of doses of the Ritalin; they made me feel like my heart was going to jump out of my chest. He didn’t set up a return visit after starting me on the Ritalin. Then dropped me as a patient without notifying me. In the six months that I saw him, I lost forty-five pounds, because I was unable to eat.
  6. My new PCP wouldn’t listen to me when I told him I was over-medicated; he being the doctor, thought he knew more than I did, about the way I felt. He was wrong. He had put me on both Vicodin and Duragesic Patch. I could barely function. I weaned my off of the Vicodin, got a new PCP who helped me wean off the Duragesic. I could finally see the world clearly, no more lost days or entire weeks. I did what was best for me.
  7. Recently while in the hospital, a doctor who was assisting with a procedure told me that he would have a hard time believing me if I told him my pain level was nine. Too many doctors don’t understand chronic pain patients and the way I and others deal with it. 

Did you notice that all the stigma I faced was from healthcare providers? Not one person in my family has ever made feel, less than a whole person, or guilty if I’m unable to make it to a family function. They are the best! My sons have always been supportive also. My husband has never made me feel like I am not a good wife. He will not allow me to talk about feeling guilty; he tells me I have nothing to feel guilty for. I didn’t ask for a life with chronic migraine. 

Almost every one of these situations could have been handled better on my part if I’d educated myself more about migraine disease. It is my responsibility to educate myself. Then when faced with stigma such as these, I’m able to advocate for myself, speak up when I believe a doctor is doing something that is not correct, like having all my medications stopped abruptly, especially the MAOI, or being started on Ritalin. In the case of being over-medicated, I did advocate for myself, even if it meant finding a new doctor. The more I know about migraine disease, the more I can advocate for myself and get a better treatment plan by working with my current doctor, which I’ve done since day one. By advocating for myself and others living with migraine disease, I’m sowing seeds of knowledge, hope, encouragement, caring, support, and beating back stigma. 

“If you have a voice, use it
If you have legs, stand up.
If you have feet, step up.
If you have each other, fight together.”
Quote ― Janna Cachola

 

*Stock picture: Storyblocks