You Don’t Look Sick

I think that every person with migraines has been told the phrase “you don’t look sick” at one time or another. Whether it’s a friends young child, or someone who doesn’t know any better, it hurts either way. I was 15 when I was diagnosed with a chronic migraine disorder, and since then I hate to say, it has only gotten worse for me. I’m sure that this is a similar story for a lot of you, and I really hope that you can take comfort in the fact that you aren’t alone, and maybe learn something from my experiences.

I saw my first neurologist during my freshman year of high school. By the time I finished first semester of my junior year, I was switching to online school because I had missed right around 50 days of school that semester alone. Though I was lucky, and had teachers and administration who are amazingly supportive, and a district with a accepting policy on chronic illness, I just couldn’t keep up with the work anymore.

At this point I had tried pretty much everything in the book. I was on my second neurologist, had seen an allergist, a psychologist, a psychiatrist, a natural-path, two chiropractors, a massage therapist, and had been in either urgent care or the emergency room more times than I can count. I was diagnosed with a severe anxiety disorder, and mild depression. Thankfully, I was able to combat the depression individually without much medication. Turns out that the medication I needed for depression was quite a few hours horseback riding, and a puppy (who was my 17th birthday present). With one health concern out of the way, we began to focus on the anxiety disorder and subsequent insomnia. The psychiatrist I was seeing was not used to dealing with severe migraine disorders, and didn’t realize that my abortive medications (Migranal, and Rizatriptan) both add serotonin to my body and that I took these medications quite often. She prescribed me a very high dose of Zoloft which also adds serotonin to the body, and I ended up with too much in my body. I was also put on anxiety medication that was supposed to be short acting, for around eight months. Finally, we stopped the anxiety medication because we were fearful of the harmful effects on my body. With the end of treatment, the anxiety started back up. I have panic attacks. I have a hard time sleeping at night, so I get a migraine. Then I can’t sleep, and I have a migraine, so I have to take medication. The anxiety will trigger my migraines, but my migraines were the main reason that my anxiety flared up. I live in constant fear of my next attack, and normally it’s right around the corner. I can’t go more than a day or two without a severe attack, that disables me for at least a day and normally two to four. No preventative medications we have tried have worked, and I have had five rounds of Botox, an SPG nerve block, and an occipital nerve block, and no relief. I have tried herbal supplements, vitamins, and some unconventional therapies. I have had a brain MRI, and spinal column X-rays. I have tried “that new thing that worked for my second cousins best friend”. I have began to keep my own health records in a binder because I see so many doctors. I am labeled as drug seeking, because low dose, and weak pain killers do nothing for me and I am 18.

As with most people with migraines, those close to me in my life are effected too. As a young person, who lives at home with the condition, my parents are a factor in my health. They try to understand, but at some point you just have to have gone through it to get it. They care about me, and advocate for me with the many doctors I have seen, drive me to get emergency treatment, and sit with me in waiting rooms. They try. They try hard. My illness doesn’t just hurt me.

For me, there is no end in sight. No end to the suffering, and no end to the pain. I take things one day, and one migraine at a time. The immediate choice of whether to take medication for this headache and if so what to take, and which ice pack I am going to use today are my daily choices. I stopped looking too far into the future, because for the time being I have to fix my health to be successful in my future. I can’t spend every day in bed forever, but for right now I am in too much pain to do anything else. On the one day I week that I manage to pull myself out of bed, get dressed, and leave the house I “don’t look sick”. I only wish that people knew the hours it took me to convince myself I was strong enough to shoulder the pain that day. Please know you aren’t alone. You aren’t crazy. Your pain is valid. Your methods of treatment are valid. Eventually, someone will find a cure for this monster of a disease that plagues our lives. Until then, we just have to be strong, and keep fighting.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • Rachel author
    3 years ago

    Just an update for anyone reading this, I was tested for Celiac Disease years ago and results came back negative. Recently a natural path told us that we should cut gluten regardless and we figured at this point that it could not hurt, and we decided to do a full food allergy panel. I have drastically reduced the number of migraines I have gotten, and while it isn’t a total solution, cutting gluten and starting Topirimate again I am starting to feel like myself again!

  • Joanna Bodner moderator
    3 years ago

    Hi Rachel – This is WONDERFUL news!!!! It’s been a long road and we are thrilled to hear that you are experiencing positive results! Wishing you many more days where you’ll be feeling like yourself again!! Thanks for the update and please be sure to keep us posted! Best, Joanna (Migraine.com Team)

  • Tammy
    3 years ago

    Hi Rachel,
    So sorry you are not finding any relief from your migraines. I went through many doctors before I was able to get some relief with Botox and nerve blocks. I have to travel a long way also. It took a few rounds of Botox before mine started calming down. The Botox (performed by students) last for almost two months but it doesn’t help the dizziness. I found that brand medications worked better also. I’m on Focalin from psychiatrist to improve focus, sleepiness, memory and it helps with dizziness. Again brand and expensive but it’s been worth it. Abortive med Relpax has been great but it leaves me weak and sleepy. Its still very challenging to manage but it has gotten better. Hang in there, and if you find no relief, possibly a university hospital with an outpatient neurology pain center could help.

  • Teresa
    3 years ago

    Hi Rachel, I know how hard it is too deal with severe migraines at a young age. I was diagnosed when I was 8. I am now 41. When I was diagnosed, all they had to give me was pain meds (and I was about 40 lbs soaking wet), so I am now almost immune to any type of pain medication. I know your struggle. You are not going through this alone. There can be a light at the end of the tunnel though. I was in your shoes. I had migraines about 28 days a month. I had tried every type of new remedy they had come out with with no luck and no fewer migraines. Finally, about 4 months ago, I ended up on a combination of meds that seemed to be a miracle for me. I went from 28 days a month down to about 15 days a month. The funny thing is that the combination wasn’t even intentional. My Neuro had me on Robaxin and Topamax for migraines and my Psych put me on Seroquel for sleep. It was almost instantaneous as soon as I started taking all three. Hopefully it won’t take you 3 decades to find your miracle, but don’t give up hope, it is out there.

  • Alison
    3 years ago

    Rachel, I’m so sorry it is so bad for you at such a young age. I know exactly how you feel. Bed every day and out once a week is the same for me but I am older than you. It must be so hard for you at your age. I’m not going to suggest a hundred possible remedies for you, just let you know that you’re not alone and thank you for sharing your story. I hope you find something that works for you soon and that your good days become more frequent. Keep trying new things as different things work for different people. And yes, our invisible pain is real and valid.

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