Skip to content

16 Again: Chronic Migraine Diagnosis as a Teen

Migraines in kids and teens are more common than you think, but they rarely look like they do in adults. I started having migraines when I was 16 and it took a while for them to figure out what was going on. What’s more, a lot of the drugs used to treat and prevent migraines in adults aren’t considered safe for children and adolescents, so treatment options are limited.

I can’t remember exactly how or when my migraines started. I just remember, somewhere in the fall of my junior year of high school, suddenly becoming a walking headache. I also started having severe insomnia, which only fed my migraines. At the time I was seeing an orthopedic specialist at CHKD for a back injury, and I mentioned once to him about my head hurting all the time. After ruling out a concussion, I was sent to a pediatric neurologist.

After a thorough evaluation by the ped neuro, I was sent home with a diagnosis of chronic migraine and a script for Topomax, as well as something to help me sleep. When the doc first said “migraine” I thought he was off his rocker. My head hurt, yes. It hurt bad. It hurt bad all the time. But I always thought a migraine could only be an unbearably painful headache that came along with nausea, vomiting and dizziness. I thought he must be wrong–my headaches are bad but they aren’t that bad.

Well I started Topomax as the doc instructed. It helped my headaches but it was a steep price to pay. I was always so sleepy and struggled to keep my head up in class. I started having a hard time with concentration and memory that I had never had before. My grades dropped. My bones became more brittle and I repeatedly broke fingers playing basketball. I even had kidney stones once. At the time I had no idea that Topomax was causing all of these problems; I was on it for nearly two years. When I came off of it because my headaches were doing better, it was like coming inside after being out in the dark for hours. I hadn’t even realized how miserable I was, or what was causing that misery, until I was able to step away from it.

After I realized what Topomax had been doing to me, I was super mad at the doc for putting me on it in the first place, but now I understand why he did. There are so very, very few drug options that are considered safe for those under 18 to use. The meds I’m on now for my migraines, for example–none of them are approved for use in under-eighteens. Still, there are treatment options available, and when all’s said and done I think being on something like Topomax is much better than getting no help at all.

To help us better understand the types of migraines and similar headache disorders found in children, their symptoms and their treatment options, the Diamond Headache Clinic has made this neat presentation and been kind enough to share:

Screen Shot 2017-11-27 at 12.55.53 PM

Diamond Headache Clinic

The Unpredictability of Chronic Illness

Yesterday was a pretty good example of how unpredictable life can be when dealing with chronic illness. I expected my Monday to go as follows:

  1. Get hand lump cut off by Hot Doctor
  2. Get allergy shot with mother
  3. Come home and write a post about getting hand lump cut off
  4. Do some chores
  5. Go to gym

Instead, my morning started off with a call from Hot Doctor explaining how he had consulted with a dermatologist and they decided it would be better for me to get my skin lesion cut off by a skin specialist. He said they decided this because of the size, location and the fact that they don’t know what it is so they want to get the whole thing to send off to pathology. So my procedure was cancelled and I must now await the dermatologist’s office to call and schedule me. I appreciate Hot Doctor taking the time to consult with other doctors and what not, but honestly it’s not that big of a deal to me–somebody just cut the thing off!

After an unexpectedly free morning my mom and I headed to the allergist’s to get our allergy shots. It was our first time getting shots together; mom has been doing them for several years already. She was very excited to be “shot buddies.” I mean we were very excited… I’m afraid I was a disappointing shot buddy though as I was rather too focused on finishing Wuthering Heights to talk much (I finished it–it’s not my favorite).

Since we had more time than expected, we were able to stop by Barnes & Noble after our shots to use our birthday gift cards from June. I was very excited to move on to less depressing literature.

After a quick hour agonizing over whether to get Lilac Girls or a collection of all Hemingway’s books (on my part at least) we headed home. I started my chores, but only got to the part of destruction before most of the actual cleaning and organizing takes place when all the sudden I started feeling weird–tired, dizzy, tingly, kinda sick to my stomach. A few minutes later it became clear what was happening–a massive migraine had come swinging out of nowhere to one-hit-KO me. A productive evening of cleaning and working out flew out the window. Instead I spent the rest of the day dealing with my petulant head.

Like I said, my wayward Monday is a good example of why making plans with chronic illness is kind of a joke. It’s like a child pretending to drive from the backseat–they can turn their make-believe wheel all they want but they have no actual control over where they go; I can sign up to do this or commit to do that but in the end I have no control over whether I’ll be able to keep those commitments–my body is in the driver’s seat. Chronic illness laughs at plans and any pretense of control or predictability. That’s just how it is.

And it’s not such a bad thing really. Sure, it makes going to school, having a job, and even having a social life pretty near impossible sometimes (sometimes actually impossible). But it has also taught me not to worry so much about the future–thanks to my illness I’m learning to take life one day at a time, do my best with the time I’ve been given, and then trust the rest to a loving Heavenly Father. That’s not so bad really.

Good News Annie, You Can Stay

Annie is a cat, not a person. It didn’t actually occur to me to ask them to test for an allergy to other people. I’ll have to look into that some time. It seems likely, especially an allergy to people who *gasp* don’t like Harry Potter or chocolate or other extremely important things.

Just in case that introductory paragraph didn’t make things crystal clear–I had skin allergy testing done Tuesday. Technically, redone, since I was also tested my senior year of high school. The first time everything was negative. Initially it was a let down, but it turned out to be a good thing because it enabled us to do further immune system testing…which led to my PI diagnosis.

This summer I reluctantly asked Dr. C if we could repeat the skin testing. I was kind of embarrassed to even ask, since I’ve had so much allergy testing done over the years and it’s almost always been negative. But my recurrent sinus infections and everything-resistant nasal congestion this year made me desperate enough to venture once again down that allergy avenue of insanity–doing the same tests over and over again and expecting a different result.

Well I didn’t really expect a different result. I fully expected it all to be negative. I expected this because I secretly hoped that something would be positive; I’ve found it best in the medical world to expect the exact opposite of what you hope for, so that it’s a little less demoralizing when your hopes once again fail to be realized. That may seem rather pessimistic, but it doesn’t really matter–I can never fully manage it anyways. No matter how many times I’ve been disappointed, it’s awful hard not to hope.

So when the nurse exclaimed, “Dang. One of them is trying to start reacting already!” before she walked out of the room I fought it. It probably will go back down before the fifteen minutes are up, I thought. That itching is probably just the histamine control. No, bad hope! Get back where you belong–outside of the Dr.’s office!

Hope must be a cat because it never listens. Even as I sat there freezing in my little paper gown and reading about poor Edmond Dantès and all his hopes being destroyed I couldn’t control it–hope settled in on my chest purring and kneading me repeatedly with its sharp, little claws. What if? it purred to me. What if?

IMG_0279
Well hope you little rebel, you were right this time. I reacted to one thing–the Aspergillus Mold. And really, I might add, I did a pretty thorough job of it.

The bad news is that Aspergillus Mold is a primarily outdoor mold that is just about everywhere all the time in Virginia. The good news is that I get to try allergy shots for it! Naturally, I expect that the allergy shots won’t help that much…because I secretly hope that they will help both my sinus infections and migraines a lot.

To prove to myself how little stock I was putting in the allergy shots, I kept my ENT appointment for yesterday. Unfortunately that kind of backfired because after hearing about the results of the allergy testing the ENT told me I definitely needed to do the allergy shots and then patted himself on the back for a job well done. So it was a bit of a wasted appointment, except perhaps, for the ENT since he got to feel very accomplished over doing absolutely nothing.

A Post-Op, a Follow-Up, an Infection–Isn’t Summer Fun?

Thursday June 15th: 2 Weeks Post-Op

Today I had my post-op appointment for my gallbladder surgery. Dr. Jones said I’m healing great. He took off the last of my steri-strips and checked to make sure the muscles underneath the incisions are coming together. I’m still not allowed to lift anything over 20 lbs or do strenuous exercise for another two weeks (which includes body weight stuff like yoga- I asked), but after that I’m clear to do as I please. I think that includes life in general–so if you see me robbing a chocolate store on TV or something, don’t worry–Dr. Jones said it’s ok.

I’m hardly in any pain any more unless I try to use or stretch my ab muscles too much. The most residual soreness is in the area where Mr. Gallbladder used to live–it feels like I’ve got a stitch/cramp there underneath my ribcage.

My digestion is also still adjusting to  the vacancy, but is doing quite well over all. After all the horror stories I read about crazy bad diarrhea post-gb removal, I had a very slight case of the runs for less than a week. I have been able to eat cheese, yogurt, lactose-free ice cream, burgers, potato chips, brownies, whip cream, avacado, and lots of other yummylicious foods that caused gb attacks before the op. I am SO happy I got the surgery. I don’t miss the little green fella one bit!

Monday June 19th:

I had a follow-up with my neurologist today. My migraines have improved from daily to 2-3 times per week–much better, but still pretty out of control. Doc L is an awesome neurologist; he listens, talks to me like an equal, and most importantly- hasn’t tried to hold my hand, not even once (my neurologist in HS always held my hand, no matter what diversionary tactics I employed to avoid it). But even he admits that total control–zero headaches for months–is likely out of reach in my case. So for now we are shooting for better control, and we’ll go from there.

Since my body seems to handle the Prozac well, we are doubling the dose (to a normal adult dose) and hoping it will get me down to 1 or so migraines a week. Unfortunately the jump in dose has brought back my favorite of Prozac’s side effects: I can’t sleep! Not a wink. Luckily it should pass in a couple weeks. It did the first time.

ms-LXU4Mk

Until then this is me

Thursday June 22nd: 

ms-N1IzVA

I have finally accepted it. I have a sinus infection, for the second month in a row. I am frustrated because it’s been just over a year since I had sinus and turbinate surgery and I’m wondering if I’m going to need another soon. With my Ig infusions I shouldn’t be getting infections this much, but they just keep coming one after another.

My immunologist doesn’t have answers for me, but he is trying. When I get an infection I don’t even have to go in, I just message him and he sends the antibiotic script to my pharmacy. This time I’m on Amox-Clav for ten days,which is an optimistically short course, but hopefully it’ll do the trick.

Unknown

I know it’s silly but every time I have to go on antibioticsI feel like a bit of a failure. Every time I go over things in my head– maybe if I had done A, B, or C differently I wouldn’t have gotten an infection. Maybe if I ate better, slept more, got more or less exercise, didn’t do this and did do that…

ms-PsZFGE

I’ll see Doc C for a follow-up in a couple weeks and we’ll talk it over, see what more can be done. It’s a constant climb and I’m always just hoping to find a good foot hold or a little ledge where I can catch my breath. But even though it’s hard–it’s so, so hard sometimes–when I stop to look around, man it’s still a beautiful view.

The Domino Effect

If you’ve ever wondered why people with chronic illnesses can’t just take some medicine and go back to things as usual, I submit the subject of this post to widen the highways of your understanding: the domino effect. The longer I’ve dealt with chronic illness the more I’ve come to understand that there is no illness, or medicine to treat said illness, thats effects are isolated to only one part of the body. Allow me to illustrate by relating the avalanche unleashed on me this year (dramatic I know but hey, it’s a killer metaphor-pun intended 😉 by one part of my body yelling out in pain.

The fall semester was going along swimmingly–September and the first part of October I felt the best I had in a good long while. Then the back half of October brought about 99 problems, all of which were related to the invisible hatchet that had implanted itself into my head. Perhaps it was the stress of midterms, or maybe my body had simply become bored of behaving–for whatever reason chronic migraine resurfaced in my life with a vengeance. You couldn’t even really call it a flare- it was more like full-blown fireworks painting the sky with the words “I’m back!” It got so bad that in the beginning of January, I did something I swore I’d never do again–go back on Topomax.

For my fortunate friends unfamiliar with Topomax, it is technically an anti-seizure drug, but it is also one of the few FDA approved drugs for the treatment of chronic migraines. A fun fact that I learned after being on it for more than a year in high school: it is colloquially known as Dopomax, because of its unfortunate tendency to make idiots of its users. But that is only one of its many fun side effects (side note–not everybody reacts to medicines the same; for many people Topomax has been a miracle drug with few side effects, so don’t just go off of my experience). In spite of poignant teenage memories of this drug causing me to believe I was getting dumb with age, I became so desperate for relief from the unrelenting pain that January third I swallowed a dose of Dopomax for the first time in over two years.

Thankfully I lucked into a neurologist that listened to my concerns about going back on this particular drug, so he started me on the lowest possible dose–a “sprinkle” dose designed for pediatric patients. But it didn’t matter. No matter how small the dose, my body refuses to get along with Topomax. This time it didn’t seem to effect my cognition as much, but it hit me harder in different ways. Since my sinus surgery about a year ago I hadn’t had a sinus infection requiring treatment with antibiotics. Two weeks after starting Topomax I was forced to go on the first of four rounds of antibiotics that dominated the first half of my spring semester. Although Topomax helped tremendously with my migraines, it destroyed my immune system, and the two and a half months I was on it were almost as bad as the years before I started on IG infusions. I couldn’t catch a break! A cold would lead to a sinus infection and I would catch another cold before I had even finished the antibiotics for the infection.

That is the domino effect–treating one problem worsens another or causes a new one altogether. I could not continue on Topomax because of the devastation it was causing my immune system, which will always be the central pillar of my health problems. On the reverse side, IG infusions often trigger migraines. Antibiotics for infections aggravate my severe IBS and lower my immune system. Steroids for infections and asthma flares decimate the immune system. Pain killers can cause stomach, liver, kidney problems–scratch that almost any medicine can cause stomach, liver and/or kidney problems. These are just a few examples. You see? The dominos never stop falling–round and round it goes, tumbling one into another indefinitely. That is one of the reasons why chronic illness is so, well, chronic. You can never quite get ahead of it.

To end this post on a more positive note: since stopping Topomax my immune system has been doing much better. I am also finding moderate migraine relief from an unexpected source–Prozac. It’s an SSRI that helps with migraines because of its action related to Serotonin. I have almost no side effects from it, which as we have been discussing, is nothing short of a miracle. It’s often hard to find the right fit with migraine medication; I was blessed to find it on only the second try this time around. So for those of you still struggling to find relief, hang in there–there is hope ahead yet.