A glimpse of what life looks like for a kid with migraines

The migraine headache is something that is commonly misunderstood. You throw it onto a child and you get blank stares. It really is not funny. If you have never had a migraine headache, I do not expect you to ever understand. If you have had one, I want you to imagine that pain on a 10 year old body. It is not easy for most adults to endure for just a few hours, but think about when you are a child…when you are still expected to function regardless of how you feel.

There is still a long way for “modern medicine” to go in figuring out what is going on when it comes to migraines. I for one, hope that it is in my lifetime. If not, I hope that it is in my children’s lifetimes. I am sure that it was the same hope that my grandmother shared. I cannot ask her if that is what she hoped for, but from what I remember of my grandmother I believe it is something that she would have hoped for.

I make it no secret that I am a migraine sufferer. I have a migraine as I type this. In fact it has been 3 hours since I took medicine to treat said migraine. The medicine of choice, Sedalmex, which is acetametaphine with a crap load of caffiene mixed with it only took the edge off. It did not take the pain away. It did not even dull the pain today. It only took the edge off. It hurts to turn my head to the right more than 30˚. Doing so sends a sharp searing pain up alongside my nose, behind my right eye and around the top of my head. The back of my neck, radiating up around the back of my head through my right ear feels like someone is squeezing a stress ball repeatedly. When I turn my head to the left, I can turn it a bit further, but by the time I hit about 90˚ I feel like someone has stretched a rubber band all the way from the back of my neck to the center of my left ear. I feel like someone has pressed constant pressure on the base of the back of my head. Imagine doing simple tasks like driving. Yes, I could be a risk to someone on the road. The problem is that I push through that pain and endure the pain spikes when I do these tasks because the pain is easier than knowing that I am a risk. I can always take more pain medication, right?

Still I push through that. I have lived many years like this. I push through it. I take preventatives, I know that tomorrow might be a better day. I just need the weather to change. I can feel the air pressure changes most of the time when they are dramatic and first start. I push through.

Then there is my 10 year old son, Lance.

The reality of what it might be like hit me when I saw my neurologist earlier this month. I have to turn in headache logs for her every time I see her. It is required as part of my treatment. I have to confess that while I am vigilant about logging my headaches for myself, I am not about doing it for my son. It is one more thing to do. His neurologist does not require it. However, we have been having problems with him at school. Dramatic problems and after seeing my neurologist, it hit me with the reality of how much of these problems are impacted by just “how bad” he is feeling during the day. I know that I do not get much done on the days like today when I just do not want to do anything because it hurts to move my head. My head hurts to think. Why should I think this is any different for the child that I know we do not have the tight control on his headaches as we do on mine? I know we have decent control on mine and still have bad months like the last couple of months. I know we have decent control and lately I have been having migraines that last 4-5 days on end. If I can have that with decent control, what do I expect for the child that does not have any control? I should not expect anything near that.

When we were at the school having a parent teacher conference with Lance’s teacher, school counselor, and the school’s assistant principal, I asked to get a printout of all the times that Lance had been to the nurse’s office. The school nurse fulfilled my request. She gave me a printout of all the times that Lance has been into the nurse’s office during the 2014-2015 school year. She was even able to print me a log of the times he was in the nurse’s office in the 2013-2014 school year.

Keeping in mind that he received his official diagnosis of childhood migraines in May of 2014 so the 2013-2014 printout was not very helpful at all because I was still bringing him medicine if he complained and they do not have to log anything if I personally administer the medicine to him. The printout for the 2014-2015 school year, however, was alarming…

This is just a brief glimpse into the daily life of a child with migraines…

The school year started the last full week of August 2014. 
Keeping in mind that I was not logging his headaches. I will just go ahead and call myself a bad mom right now. Sign me up for the “Worst Mom of the Year Award” right now!
I have nothing to put in on this calendar. I feel awful about it. 
I do know that he has headaches EVERY Sunday so that is marked by default. The lights in the church building are a trigger for him. The lights primarily in the Chapel and the Primary Room are the triggers. There are multiple types of lights and they are all on at one time. The lights are a trigger for me. We do not notice it as much for me as I have more tolerance for my triggers because of my dosage on my preventatives. If I go into the chapel with a headache already, it is instantly worse. The same setup of lights are in the Relief Society Room as are in the Primary Room. I would not sit through Sunday School and Relief Society as they were both held in the Relief Society Room. I would opt for Relief Society only on Sunday. 
We have since figured out that if we turn off one type of the lights in the Chapel we get improvement. He can now make it through most of Sacrament Meeting without a headache. Before he would sleep through the entire 1:15 meeting. Now his headaches occur primarily after he has been in the Primary Room during that block of classes. I have marked all Sunday headaches as the same time for ease for now because I have not logged anything. I will keep a better watch on that from this point forward (as of 1/23/2014).
This is the month of September 2014.
Again, I do not have a lot to put into the calendar. It took me a couple of weeks to get all of the paperwork for Lance’s treatment at school for pain medicine, etc. Again, if I administered the medicine to him, it was not logged so he very much could have had headaches anytime before September 11th and the nurse did not log them because she was not required to. 
In all honesty, September does not look too bad as a whole. If my neurologist was looking at it and counting, there would be 13 headache days. That is not good, but it is still under the 15 days that is often used to label someone as chronic.
The one thing that is worth noting is that all but one of his school day headaches were at 1:00pm-ish. That one day, I am going to assume there was a change in the schedule. It was at 11:59am. He comes in from PE or Recess around the 1:00pm time. There is a change in light from bright sunlight to the lights inside the building.
He did have one day where he took 2 trips to the nurse’s office for pain medicine. That was a day that started in the afternoon at 1:00pm and he made his second trip at 2:40pm.
This is the month of October 2014.
Again, I do not have a lot of personal data to put into this calendar. I am feeling pretty crappy about this at this point. It makes me wish I had a perfect memory. I don’t. I do know that most days he gets into the car and complains about headaches. Most days. Makes you feel like a bad mom…
This month he tipped the scale at 16 headache days. Please keep in mind that this is just his recorded headache days. This does not count the unrecorded days because his mom did not quite have it together. 
This month he had 2 days where he had to go to the nurse twice during the school day. Both of these days started at 1:00pm with him returning at 2:30pm or 2:50pm.
He was absent from school (sick) one day this month.
This is the month of November. 
I really wish that I had kept a better record of this month because this is the month where he got sick. He actually got sick on Halloween (October 31) but the bulk of his sick days were during the month of November. It would be interesting for me at this point to see how his sick days impact his headache days. 
Obviously, we do not have record of headaches on days where there was no school because I did not have it together at this point. They had 5 days of vacation this month due to the Thanksgiving holidays.
He was absent from school (sick) a total of 8 days. 
Without factoring in the non-recorded headaches that were possible, his headache count this month looks better at only 6 days.
This is the month of December 2014.
We have more holidays this month. He had 8 days off for holidays in December.
This is the first month where I actually had to take him home for headache pain. This caused a “sick day” due to headache. This was his 10th absence for the school year because I picked him up 20 minutes before they took roll for the day. He went to the nurse’s office at 9:00am that morning. 
Not accounting for any non-recorded headache days, his headache day count for December is 11.
This is January 2015.
What I did not have written in on this calendar yet were the two holidays the kids just had from school. They had 4 days off for holidays this month.
So far this month he has been sick 1 day. He had the start of an ear infection and that caused all sorts of problems for him. He actually ended up with a migraine that day as well. I have written that in as well. 
So far this month, Lance is already at 6 days and we still have 9 days to go. That does not account for all the days I know that he has said he had one at school that are not on his printout. He had some changes at school where he was in the office doing some of his make-up work and they were not sending him to the nurse’s office to get pain medicine for his headaches. I know he had headaches but I do not know what days for certain so we will leave them off until I talk to him.
In about an hour we will take all this to his neurologist. I am hoping that we will get some answers and hopefully some more relief and/or help for him. If not, I have decided that it is time to move on to another neurologist. It has been about a year since we started seeing this one and my hope was that we would have seen more progress at this point. Unfortunately, we have not. 
It is sobering. It is humbling. It is frustrating to see it all out on paper where you cannot ignore what it is.
This is what my youngest son deals with every single day. I cannot fault him for not being able to concentrate or not getting things done at school. I hope that he will, but at the end of the day, what do I tell the child that endures this every day knowing what it is like? I have to get him better control. He deserves that.

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