It was the early evening of September 17, 2011. My husband walked from our living room to the entry way and suddenly yelled, grabbing his head. Running to see what happened he was shrinking quickly to the floor. He had a “thunder clap” of head pain. In that instant our lives forever changed. This was his first migraine, a migraine that would last 5 years with no relief. He has not had one day without pain since.
For many people a migraine causes nausea, sensitivity to light, noise and/or smells. Those that suffer often go to bed for a few hours to a few days and will come out pain free on the other side. For my husband this is not the case. He is bothered most by sound and will sometimes have the nausea but only occasionally the light and smells will trouble him. He goes to bed but it only lessens the pain, he is never pain free. He stays shut away in our living room where it is quiet, often going to bed before the kids do.
We found a doctor right away and began working on a cause and solution. CT scans first, nothing, blood work next, nothing. Referred to a neurologist, 6 months later we have our first visit. Started preventatives, maybe a hint of them working. They didn’t spike as high every evening. Side effects were terrible though.
1 Year later
New neurologist (first one we found out was only there for the summer) and new preventative plus abortive (they are to stop a migraine before it gets bad). Abortive worked a little to keep them from spiking. Moving on to a different preventative and a different abortive. Now he has a reaction to abortive’s that close up his throat. All abortive’s since then have the same result so he can no longer try any of them. Next the preventatives are no longer making a difference. We continue on this path for the next 2 years. Spinal taps, MRI’s, more CT scans, ECG’s, eye exams, allergy testing, blood work, etc. Nothing can be found.
2 Years later
Around the 2 year mark the neurologist recommends the “DHE protocol”. They hospitalized my husband for 3 days and use IV medication to break the headache. It works! His headache is gone. We are so excited. I feel like our lives can go back to our pre-migraine normal. They release him with new medications. The headaches start back the day he is released though. One good thing is that he can use over the counter meds to take it away. This happens every day though. He alternates medication types to prevent rebound headaches. Less than 3 weeks later he is back where he started. He and I are both deflated.
3 years later
Fast forward 1 year later and we are back in the hospital for the protocol again. This time it only takes 24 hours to break the headache. He is sent home with medication adjustments. We are home 2 hours and the headache returns. This time it returned and nothing would take it away. He said it was a waste of time and money for a few hours of relief and he did not want to go back to the hospital again. I felt the same, he’s still in pain and now we have a huge hospital bill to go along with that pain.
Next, a cerebral spinal fluid leak is suspected so a blood patch is ordered. September 11, 2014 (3 years after the onset) the procedure is performed. We watch news programs about the anniversary of 9/11 as I wait for his procedure to be completed. It’s always hard for me to watch those and not cry. I was a jumble of emotions that day. Saddened by the events from the past on that day, excited this procedure could work, scared it won’t, worried about medical expenses. Well, IT HELPS!!!! He would start the day at about a 6 and end at a 9 or 10 every day. Post blood patch he started at about a 3 and ended about a 6. That is an enormous improvement!
4-5 Years later
Slowly over the next two years it creeps up on the pain scale again. He has seen an ophthalmologist, chiropractor, acupuncturist, allergist, cardiologist, “big city” neurologist, gastroenterologist, urologist, hematologist, hepatologist and upcoming an ENT that specializes in CSF leaks. We are back to another CSF leak. He has had almost every type of medication out there.
The “big city” neurologist had a paper filled with medications. We highlighted every medication he has tried. It was quite colorful when we were done. You could hardly tell the paper was originally white. This is actually kind of stomach churning for both of us to see. We were told at that point only nerve blocks or surgery to either sever nerves or implant nerve stimulators would work. We tried the nerve blocks, Nothing! That ruled out the surgeries. He is so done! I understand but keep pushing for him to keep trying. If he gives up……I can’t go there.
During this last year and a half his head pain has had an overall impact on him. He has lost over 70 pounds ( he didn’t really have that much to lose), easily gets colds and stomach issues. Vertigo and possible petit maul seizures began. These possible seizures could not be diagnosed and never were diagnosed. He was treated as if he had them but no one knows if they were really seizures.I worried constantly! Thankfully medication did work for the vertigo and possible seizures and he no longer has those episodes.
Consequences of Pain
When his head is at its peak he can’t really eat. He has to choose between eating and possibly throwing up, which makes the headache shoot through the roof, or not eating and the headache increases due to hunger. The hunger is the lesser of the two evils for him. He sits at the table with us for dinner but we are fully aware he is miserable sitting there. Tortured because he is hungry but knows the consequences. At this point in time he starts most days at an 8 and ends at a 10.
At last count, which I haven’t done for more than a year as it makes my stomach turn, we have paid out of pocket at least the cost of a new car for medical care related to his head. We have many more doctor visits and a probable surgery in our near future.
Needless to say he is tired, we are all tired. Tired for different reasons. I’m physically tired for playing both parents when we have events to go to, places to take the kids, help with homework, etc. Tired emotionally from worry of what the future holds for his health. The kids are tired of being told, “Shhhhhh…dad has a headache” and they have come to expect dad can’t usually go with us to events. He is tired of the pain, the medication, the feeling sick, doctor visits and tests. Tired of not going to things for the kids and not being able to do the things he used to enjoy. We (maybe it’s just me) have hope though that one day the headache will stop just like it started.
We are Learning
Prayers are being said for him by so many people, asking for the headaches to cease. It would be easy to say they are not being answered. They are, in my opinion. The answer is not right now. There is a lesson in this as people say. There has to be! We just don’t know what it is yet. Maybe we are learning how to help someone else cope whose situation is similar. Maybe it’s patience (a lesson I really would have been OK without ever learning), maybe it’s trust (in one another or in the doctors or in God’s timing), or maybe it’s to appreciate your health and family. We don’t know and may never know. I trust God has a plan for us though. I do not have the patience of Job, but I am learning.
“…but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope” Romans 5:3-4. We will endure and grow stronger through this. It has not been, nor will it be easy. We must though; what other choice is there. We vowed to love each other and stay together in sickness and in health. Health is easy; sickness, that’s another story. We will get through this together!