Trigger warning: suicide
I personally have at all times had migraines, as did my mother and my maternal grandma. Back then they have been simply unhealthy complications the place you took Tylenol and laid down for the day. I by no means knew there was such a factor as power migraine, hemiplegic migraine or intractable migraine till my daughter Melissa was identified in her teenagers. Unfortunately, all three of my kids inherited my migraine illness.
Melissa was our center little one, with an older sister Erin and a youthful brother Billy. She was at all times particular. Her persona was so large you couldn’t assist however love her. She had such a bubbly persona and she or he beloved to make individuals chortle. She actually may mild up a room along with her smile and her chortle. She was additionally my drama queen who beloved to be the focal point, which appeared to make life tougher for her when she grew to become debilitated by migraine.
Prior to changing into power, she was very talked-about. She was good and excelled at school. She was a cheerleader and simply beloved to hang around along with her pals. She was at all times up for an journey. She was energetic and at all times smiling or laughing. She beloved life and everybody beloved her.
Migraine was at all times part of her life, however when she was episodic it by no means stopped her from dwelling. Her main care doctor handled her migraines in highschool with preventatives and triptans, which have been typically efficient, and she or he at all times tried to push by. When he ran out of choices he despatched us to our first neurologist who labored along with her for nearly two years earlier than referring her to the Mayo Clinic in Minnesota.
In that final yr, she had 82 emergency room visits and 72 inpatient hospital days to attempt to break her migraine assaults. During this time she additionally tried chiropractic remedy, acupuncture, a neurological bodily therapist and a number of pure remedies however by no means obtained any aid.
The more durable we tried the extra comorbid diagnoses have been added on to her. She by no means gave up on her dream to turn into a nurse and went away to varsity for her freshman yr. We thought it’d do her good to be in a unique surroundings and meet new individuals. She did make it by her first yr however needed to medically withdraw her sophomore yr.
I at all times say 2010 was the start of the top for her. She moved again dwelling and on her good days she would spend her time with pals and had a gradual boyfriend. They have been in a position to give her some distraction from the ache 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 find a treatment for Melissa there. We thought if among the best clinics on this planet couldn’t treatment her then who may? She was seen by a neurologist, an ophthalmologist, had extra MRIs. After per week of testing and docs, we have been instructed she ought to come again in October to do their six-week outpatient ache clinic to be taught to stay with the ache as they’d no new ideas for drugs or remedies for her. She instructed the physician she wasn’t dwelling, she was simply making an attempt to outlive at that time.
Disappointed doesn’t even start to clarify how we each felt. If a world-renowned clinic has no remedy choices the place would we go subsequent?
It was an extended, lonely experience dwelling. Just 20 minutes after we pulled in our driveway I had a foul feeling and walked into her bed room and she or he was taking handfuls of capsules. I ended her and known as 911 the place she was taken to the hospital and placed on a ventilator for six days. It was contact and go as a result of a variety of the drugs she took have been muscle relaxers and affected her coronary heart. That was her first and solely prior suicide try. She at all times swore she would always remember the look in my eyes when she wakened and would by no means do this to me once more.
It was an extended highway to restoration, however her family and friends rallied round her and helped her by the robust occasions. Though they couldn’t take her ache away they may no less than be there to assist her and on her good days make her chortle.
After that, we discovered a tremendous migraine specialist who was in a position to give her hope. He grew to become like a grandfather to her and was accessible 24/7. He tried 6 rounds of Botox, nerve blocks and each sort of remedy he may consider. He gave her a toolbox of issues to make use of at dwelling to maintain her out of the ER however greater than something he by no means gave up on her. She had a number of extreme unwanted side effects from a few of the drugs however he stored making an attempt. Sometimes that may imply extra to you than something.
Melissa additionally had cyclic vomiting syndrome and extreme gastroparesis so she would vomit as much as 20 occasions a day with dry heaves making her head explode. Many of her drugs got by injection as she couldn’t preserve most oral drugs down. But nothing labored. Not even the gastric pacemaker they put in to attempt to assist her digestion and cease the vomiting.
By this time it actually was simply the 2 of us preventing this struggle. Those pals who have been so supportive had drifted off dwelling life like a 20-year-old ought to be. She was caught dwelling in a darkish quiet room. Her despair flared. She had been seeing a psychiatrist and psychologist for years since her preliminary prognosis. It was simply so exhausting being 20 years previous and bedridden whereas watching all your mates transferring on with their lives.
My oldest daughter thought her sister was being a “drama queen who didn’t want to work or go to school.” My husband needed to take over all of the parenting and family duties as a result of Melissa grew to become my full-time job. Between physician appointments and hospitals I used to be hardly ever dwelling. It put a variety of stress on our household, my husband, and our youngsters. My oldest daughter is now borderline power and actually struggling along with her migraines so she carries a variety of guilt about issues she stated or did. My son was youthful and into sports activities and pals so he grew up along with her sickness but it surely didn’t have an effect on him as a lot throughout that point. It was just about the norm for mother to need to handle Melissa.
In January of 2013, two issues occurred. Her fabulous migraine specialist retired and she or he discovered the web migraine neighborhood. Prior to discovering this on-line neighborhood we by no means knew there have been different people who have been completely debilitated by migraines like she was. She met so many pals and simply latched on to this new group of individuals that really understood what she was going by. They have been there to assist her, give recommendation, discuss on-line or textual content when she was up all evening as a result of her ache and insomnia would trigger her to go days with out sleeping. They would later be those to point out me love and assist with out judgment.
When her specialist retired he referred her to a really well-known migraine specialist close to Chicago. We made an appointment and went to see him. After studying her chart and all of the drugs and coverings she had tried, he instructed her she could be losing her money and time as there was nothing else he may try to he couldn’t take her case as a result of she was “too complicated.” She actually begged him, saying, “I will try anything, just please help me!”
He stated, “I’m sorry,” and walked out of the room. She grew to become so hysterical they led us out the again door of his workplace so we wouldn’t upset the opposite sufferers within the ready room.
Driving dwelling she stated it was like a knife by her coronary heart to listen to these phrases from a health care provider. He could be the primary of 4 specialists and clinics who would refuse to take her case within the subsequent 5 months as a result of she had tried “everything.” Each appointment, and listening to those self same phrases repeatedly, simply made one thing within her die somewhat extra.
She misplaced her smile and her once-bubbly persona and simply shut herself away from the world. It’s disheartening when you find yourself 22 and docs are telling you that you’ve got tried all the things — and it is best to simply be taught to stay with the ache. She actually wasn’t dwelling at the moment. We have been again to the hospital stays and ER visits the place she was handled like a drug seeker, instructed she was pathetic, and handled so poorly by the medical professionals who have been presupposed to have empathy. They couldn’t see how exhausting she was preventing simply to remain alive. Most occasions she solely needed Zofran and fluids so she may cease vomiting, and so they wouldn’t even give her that.
This is when she began speaking extra 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 health care provider to take her case that I might lose her … and that’s what occurred on June 7, 2013. The medical neighborhood actually failed her and the isolation from individuals her age made her lose all hope of ever dwelling a traditional, pain-free life.
Today now we have extra hope and coverings for migraine and headache problems than ever earlier than. The neighborhood is rising and advocacy is changing into extra part of our neighborhood we lastly are seeing the analysis and new remedies migraine and headache problems want and deserve. We have hope for much more remedies within the subsequent few years. It actually makes me joyful to see so many responding to the brand new drugs. We now have some superb docs advocating proper alongside us. Our voices have turn into louder and we’re not prepared to just accept second-hand remedies and medical professionals that brush us off.
I personally want I might have discovered my voice and been higher in a position to advocate for Melissa. She actually held on for much longer than I may have. I’ve by no means been offended on the selection she made, however I might do something to have her again. She actually was my coronary heart and soul.
We didn’t have the remedies accessible at the moment and I didn’t know a few of the superb docs that I’ve since met whereas advocating with the neighborhood that holds my coronary heart. I’ve been requested many occasions why I’m so obsessed with migraine advocacy and preventing for a treatment once I may have simply walked away after I misplaced Melissa. To today it’s the migraine neighborhood who remembers her on particular days and fights with me to maintain her reminiscence alive.
I need to see efficient remedies and a treatment in my lifetime. We have misplaced so many within the migraine neighborhood and others are nonetheless hanging on by a thread. I need to give them the hope they so desperately want.
The extra we advocate for analysis and new remedies the extra individuals have an opportunity of getting their life again. The medical neighborhood remains to be failing many. The insurance coverage corporations have to pay for extra remedies that aren’t accessible to all with out having to struggle.
Most of all, I need individuals to understand how debilitating migraine and headache problems will be. I really have by no means seen anybody undergo like Melissa did, and it was gut-wrenching to observe her and never have the ability to take her ache away — and I do know now there are hundreds of thousands of individuals struggling similar to she did. But now we have to get non-sufferers to know that their ache is actual, and it isn’t an invisible sickness like so many need us to consider.
If you feel suicidal, serious about hurting your self, or are involved that somebody you recognize could also be in peril of wounding himself or herself, name the National Suicide Prevention Lifeline at 1-800-273-TALK(8255) or the Suicide Hotline: 1-800-SUICIDE (1-800-784-2433), each of that are staffed by licensed disaster response professionals, or name 911.