Tag: friendships

Chronic Migraine, Reader Stories

Migraine Stories: Insights from a Teenager With Chronic Migraine

Kerrie Smyres

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.

Favorites, Friends & Family

Friends, Family & Illness

Kerrie Smyres

The canceled plans, dirty kitchens and general grumpiness that go along with having headaches, whether episodic or chronic, puts strain on even the best of relationships. With all my experience, you’d think I’d have some suggestions for dealing with this, but my brilliant strategy is to feel guilty. Not too productive, I know.

The new blog How to Cope With Pain highlights “family issues” once a week. Last week’s post answered questions that family members might have, like “Is the pain real?” Here’s part of her response:

“Faking pain, on purpose, to get out of something or to get a reward is known as malingering. While it does occur, it’s rare. Most patients feel very guilty about not being able to do the things they used to do, whether working at a job or taking care of their family around the house. Very few patients with pain make more money out of work than working.”

On her blog, migraineur Nicole offers tips for friends of chronics, including: “[P]lease do not decide for us what we can and cannot do. If you are having a party, let us know. Let us decide if we can or can’t make it to the party, movie, or what have you.”

This anonymous letter to people without chronic pain begins with, “These are the things that I would like you to understand about me before you judge me.” It goes on to explain what many chronics wish their loved ones understood.

If your friends are wondering what they can do, direct them to 50 Ways to Encourage a Chronically Ill Friend. Many ideas focus on encouraging the sick person talk about things that most people don’t want to hear about, like the massive changes that illness has brought to their lives. [via ChronicBabe]

What I fight with the most is being honest. It’s much easier to say that everything is OK than to admit that it’s not. When I do have the courage to tell people how I really feel, I worry that I complain too much.

I’ve finally accepted that my friends and family understand the best that they can. I’ve lost a lot of friends along the way. Although hard at the time, I’m better off for it. I don’t have the energy to convince other people that I feel terrible or deal with their insecurities when I cancel or don’t call them.

Because of my illness, my faults are in plain view. It’s simply too hard to hide that I’m selfish with my time, can be terribly insecure about the most bizarre things, and have great intentions with little follow-through. My friends and family accept me for what I can give now — which may be different than I gave three years ago or will give two months from now.

That’s the beauty of love.