A Disease Passed Down
I myself have always had migraines as did my mom and my maternal grandma. Back then they were just bad headaches where you took Tylenol and laid down for the day. I never knew there was such a thing as chronic migraine, hemiplegic migraine or intractable migraine until Melissa was diagnosed in her teens. Unfortunately, all three of my children inherited my migraine disease.
Melissa was our middle child with an older sister Erin and a younger brother Billy. She was always special. Her personality was so big you couldn’t help but love her. She had such a bubbly personality and she loved to make people laugh. She truly could light up a room with her smile and her laugh. She was also my drama queen who loved to be the center of attention which seemed to make life more difficult for her when she became debilitated by migraine.
Prior to becoming chronic, she was very popular. She was smart and excelled in school. She was a cheerleader and just loved to hang out with her friends. She was always up for an adventure. She was energetic and always smiling or laughing. She loved life and everyone loved her.
The Evolution of Migraine
Migraine was always a part of her life but when she was episodic it never stopped her from living her life. Her primary care physician treated her migraines in high school with preventatives and triptans which were sometimes effective and she always tried to push through. When he ran out ofoptions he sent us to our first neurologist who worked with her for almost 2 years before referring her to the Mayo Clinic in Minnesota because he had run out of options.
In that last year, she had 82 emergency room visits and 72 inpatient hospital days to try to break her migraine attacks. During this time she also tried chiropractic treatment, acupuncture, a neurological physical therapist and multiple natural treatments but never got any relief.
The harder we tried the more comorbid diagnoses were added on to her. She never gave up on her dream to become a nurse and went away to college for her freshman year. We thought it might do her good to be in a different environment and meet new people. She did make it through her first year but had to medically withdraw her sophomore year.
The First Suicide Attempt
I always say 2010 was the beginning of the end for her. She moved back home and on her good days she would spend her time with friends and had a steady boyfriend. They were able to give her some distraction from the pain and hope on her worst days.
In June of 2010, we made the 9-hour drive to Mayo Clinic. We had naively put all of our hope in finding a cure for Melissa there. We thought if one of the best clinics in the world couldn’t cure her then who could? She was seen by a neurologist, an ophthalmologist, had more MRIs. After a week of testing and doctors, we were told she should come back in October to do their 6-week outpatient pain clinic to learn to live with the pain as they had no new suggestions for medications or treatments for her. She told the doctor she wasn’t living, she was just trying to survive at that point.
Disappointed doesn’t even begin to explain how we both felt. If a world-renowned clinic has no treatment options where would we go next?
It was a long, lonely ride home. Just 20 minutes after we pulled in our driveway I had a bad feeling and walked into her bedroom and she was taking handfuls of pills. I stopped her and called 911 where she was taken to the hospital and put on a ventilator for 6 days. It was touch and go because a lot of the medications she took were muscle relaxers and affected her heart. That was her first and only prior suicide attempt.
She always swore she would never forget the look in my eyes when she woke up and would never do that to me again.
It was a long road to recovery but her friends and family rallied around her and helped her through the tough times. Though they couldn’t take her pain away they could at least be there to support her and on her good days make her laugh.
Running Out of Options
After that, we found an amazing migraine specialist who was able to give her hope. He became like a grandfather to her and was available 24/7. He tried 6 rounds of Botox, nerve blocks and every kind of medication he could think of. He gave her a toolbox of things to use at home to keep her out of the ER but more than anything he never gave up on her. She had multiple severe side effects from some of the medications but he kept trying. Sometimes that can mean more to you than anything.
Melissa also had cyclic vomiting syndrome and severe gastroparesis so she would vomit up to 20 times a day with dry heaves making her head explode. Many of her medications were given by injection as she couldn’t keep most oral medications down. But nothing worked. Not even the gastric pacemaker they put in to try to help her digestion and stop the vomiting.
By this time it truly was just me and her fighting this fight. Those friends who were so supportive had drifted off living life like a 20-year-old should be. She was stuck living in a dark quiet room. Her depression flared. She had been seeing a psychiatrist and psychologist for years since her initial diagnosis. It was just so hard being 20 years old and bedridden while watching all your friends moving on with their lives.
Impact on the Family
My oldest daughter thought her sister was being a “drama queen who didn’t want to work or go to school”. My husband had to take over all the parenting and household tasks because Melissa became my full-time job. Between doctor appointments and hospitals I was rarely home. It put a lot of stress on our family, my husband, and our kids. My oldest daughter is now borderline chronic and really struggling with her migraines so she carries a lot of guilt about things she said or did. My son was younger and into sports and friends so he grew up with her illness but it didn’t affect him as much during that time. It was pretty much the norm for mom to have to take care of Melissa.
Losing Hope of Ever Having a Normal, Pain-free Life
In January of 2013, two things happened. Her fabulous migraine specialist retired and she found the online migraine community. Prior to finding this online community we never knew there were other people that were totally debilitated by migraines like she was. She met so many friends and just latched on to this new group of people that truly understood what she was going through. They were there to support her, give advice, talk online or text when she was up all night because her pain and insomnia would cause her to go days without sleeping. They would later be the ones to show me love and support without judgment.
When her specialist retired he referred her to a very well-known migraine specialist near Chicago. We made an appointment and went to see him.
After reading her chart and all the medications and treatments she had tried he told her she would be wasting her time and money as there was nothing else he could try and he couldn’t take her case because she was “too complicated”. She literally begged him saying “I will try anything just please help me”, he said I’m sorry and walked out of the room. She became so hysterical they led us out the back door of his office so we wouldn’t upset the other patients in the waiting room.
Driving home she said it was like a knife through her heart to hear those words from a doctor. He would be the first of four specialists and clinics who would refuse to take her case in the next 5 months because she had tried “everything”. Each appointment and hearing those same words repeatedly just made something inside of her die a little more.
She lost her smile and her once bubbly personality and just shut herself away from the world. When you are 22 and doctors are telling you that you have tried everything just learn to live with the pain? She truly wasn’t living at that time. We were back to the hospital stays and ER visits where she was treated like a drug seeker, told she was pathetic and treated so poorly by the medical professionals who were supposed to have empathy. They couldn’t see how hard she was fighting just to stay alive. Most times she only wanted Zofran and fluids so she could stop vomiting and they wouldn’t even give her that.
This is when she started talking more about suicide.
She would say if I was an animal they would put me down, they would never let them suffer like this. I knew if we couldn’t get a doctor to take her case that I would lose her and that is what happened on June 7, 2013. The medical community truly failed her and the isolation from people her age made her lose all hope of ever living a normal, pain-free life.
Hopes for the Future
Today we have more hope and treatments for migraine and headache disorders than ever before. The community is growing and advocacy is becoming more a part of our community we finally are seeing the research and new treatments migraine and headache disorders need and deserve. We have hope for even more treatments in the next few years. It truly makes me happy to see so many responding to the new medications. We now have some amazing doctors advocating right alongside us. Our voices have become louder and we are no longer willing to accept second-hand treatments and medical professionals that brush us off.
I personally wish I would have found my voice and been better able to advocate for Melissa. She truly held on much longer than I could have. I have never been angry at the choice she made but I would do anything to have her back. She truly was my heart and soul.
We didn’t have the treatments available at that time and I didn’t know some of the amazing doctors that I have since met while advocating with the community that holds my heart. I have been asked many times why I am so passionate about migraine advocacy and fighting for a cure when I could have just walked away after I lost Melissa. To this day it is the migraine community who remembers her on special days and fights with me to keep her memory alive.
I want to see effective treatments and a cure in my lifetime. We have lost so many in the migraine community and others are still hanging on by a thread. I want to give them the hope they so desperately need.
The more we advocate for research and new treatments the more people have a chance of getting their life back. The medical community is still failing many. The insurance companies need to pay for more treatments that aren’t accessible to all without having to fight.
Most of all I want people to realize how debilitating migraine and headache disorders can be. I truly have never seen anyone suffer like Melissa did and it was gut-wrenching to watch her and not be able to take her pain away and I know now there are millions of people suffering just like she did. But we have to get non-sufferers to understand that their pain is real and it isn’t an invisible illness like so many want us to believe.
If you are feeling suicidal, thinking about hurting yourself, or are concerned that someone you know may be in danger of hurting himself or herself, call the National Suicide Prevention Lifeline at 1-800-273-TALK(8255) or the Suicide Hotline: 1-800-SUICIDE (1-800-784-2433), both of which are staffed by certified crisis response professionals, or call 911.
Working for a future where no one dies of suicide due to migraine disease…
Donate to migraine research today.
Comments are closed.