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Migraine Stories: Insights from a Teenager With Chronic Migraine

Having chronic migraine is always difficult, but living with migraine as a teenager is particularly tough. At the age of 17, Sidney already knows how devastating chronic migraine can be. It’s impact reverberates throughout her life, especially in lost friendships and being behind in school. Yesterday she began a stay at a comprehensive pediatric pain rehabilitation center—please keep her in your thoughts as she goes through this intense process. I so hope she finds some relief. She shares her story up to now with you below. She’s also making notes about her stay at the pain clinic and hopes to share the experience with you. 

Here’s how to share your story. And you can read more readers’ stories here.

Migraine Background

My diagnosis is chronic migraine headache with (occasionally) aura, light and sound sensitivity, lightheadedness/dizziness, and nausea but thankfully without vomiting. I am 17. I was diagnosed with episodic migraines when I was about 5 years old. I’ve had them ever since I can remember and my parents say that I started complaining of them as soon as I could articulate what was going on. I find the fact that chronic pain and illness in general is so unknown. But maybe that’s a side effect of such a widespread thing. All the people who experience it are forced to isolate themselves, so we don’t ever see them.

Migraine’s Impact on Sidney’s Social Life, School

This illness has taught me that I’m very comfortable being by myself and that I don’t need a constant companion to be happy. But, it’s a catch 22. I can actually be SO comfortable by myself that ‘alone time’ can stretch on until I’ve isolated myself too much. I will list the affected areas in the order they have been most impacted:

1) My social life. Since my illness started 4 years ago I have moved once. I had already lost most of my friends before I moved but I was able to hold on to 2 really essential people I care about. Since moving, I haven’t been able to make any friends.

2) School. I should be graduating this year, and the two really good friends I mentioned earlier are. But because of my migraines, I have fallen at least a full year behind on school, if not more.

Coping

migraine-teenager-dogsI would have to say that at this period of time, I’m not coping very well, and that my main coping source comes from my pets. My relationships have pretty much been beaten down to my parents. I’ve been surprised by how much closer this has brought me to my Mom, and how it’s made me realize how similar I am to my Dad. My parents show their support by continuing to put up with me. I don’t always (most always) make it easy and I can’t put into words how much I appreciate that simple fact. I have one really good relationship with a health care provider and the others are just okay. I really like my neurologist (who is actually a headache specialist), and the others (like psychiatrist and therapist) are supportive but not really knowledgeable of my illness. They each support me in the ways that they know how, and that’s all I can really ask for.

Nerve Stimulator: Relief… Until it Stopped Working

migraine-teenager-nerve-stimulatorI got the neurostimulator trial in June 2015. The electric leads go from the occipital area in the back of my head and over my ears to my forehead just above the eyebrows. [The leads are external, as this photo shows, only during the trial.] The rechargeable battery is about the same size as a pacemaker and was implanted in my non-dominant shoulder. My scar is about an inch long and is easily covered up. Usually for the first year, the stimulator needs to be readjusted for intensity and duration. This implant is very similar to what someone with chronic back pain would get.

During the trial and for the first few weeks I had the implant, my pain was kept at 5/10 at the most, and 0 pain at the least. I was singing hallelujah! Then after my grandmother died in the beginning of September, the stim stopped working. I don’t know if stress, or grief, or this crazy idea that my body learns to reject any type of treatment provided, but that was a big blow to take.

Now, for any of you that might want to check this out, there are two problems to consider: 1. You have to be referred or seen by a headache specialist. 2. The stim is VERY EXPENSIVE! My co-payment was about $10,000 with insurance paying much more. That being said, I hope there are some of you out there who can use find relief from this treatment.

Sidney’s Advice for Others With Migraine

My advice would be to make sure you like your provider and you feel that they are actually helping you. I’ve found that any Dr. I didn’t like, I didn’t feel was giving me proper support. Also, don’t be afraid to change providers if you’ve come to a standstill in your care. Even if you really like so-and-so, you need to actually feel like they’re helping you and things can get worse if this stops.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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Stimulator Photos

stimulatorHart took photos of the stimulator before my surgery. Thought you’d be interested in seeing what it looked like. Click on the images to see a bigger photo.

If you’re thinking about getting one, don’t let these pictures dissuade you. My stimulator was considerably larger than those used now. Also, the current trend is to implant them in the lower back/upper butt. I assume time has shown this stresses the leads least.

Mayo is supposed to send my stimulator after their legal department clears it from inventory. I’ll post photos and dimensions then.

Also included for your amusement is my current haircut — my remedy for the huge uneven rectangle in my hair. The surgeon needs remedial training for his shaving skills. (Sorry, Mom, I know you hate it.)

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Thanks So Much

First, I want to say thanks again for all the supportive comments and emails. It’s been great for both of us to know that so many people are thinking about Kerrie and her recovery.

I just wanted to post a quick update that she’s still doing well but now that the anesthesia has worn off she’s feeling a bit more battered than she was last night so she’s not going to be up for posting today. Still, I know she’s doing a lot better than when she had the stimulator put in because she’s already sitting up reading, talking on the phone, and occasionally puttering into the kitchen for a snack. Hopefully she’ll returning you to your regularly scheduled programming tomorrow.

–Hart

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She’s Out, She’s Great

I’m sitting next to Kerrie in the recovery room and she’s doing great, eating Graham crackers, drinking water, talking about baseball, and generally enjoying having a few fewer ounces of metal in her life. We asked to keep the stimulator and hopefully they’re going to clean it up, inspect the unit, and then send it to us so she can post a bunch of pictures of it.

Oh! Gotta go–the wheelchair is here. I’m sure Kerrie will provide more thoughts soon.

–Hart

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Kerrie’s in Surgery

I just wanted to let you all know that they just wheeled Kerrie back for her surgery about ten minutes ago. She’s been in great spirits, even if she’s really hungry at this point. Well, she’s probably not very hungry right now…she was already slurring a bit from her anesthesia meds as I was leaving so I’m sure she’s asleep back there.

I’ll post again when she’s out and recovering. A big thanks to everyone for their well wishes — it’s meant a lot to both of us!

–Hart