Seizures and migraine may be linked in the brain, according to new findings from Penn State researchers. This is potentially a very big deal and could have wide-ranging implications. I had to share the information with you, but my brain fog is too heavy to be able to explain it.
For details, take a look at the press release on the research: Link Seen Between Seizures and Migraines in the Brain. It’s scientific, but not entirely technical. I can understand it through brain fog, but can’t describe it. Popular news media will probably cover the story, so more accessible explanations should be forthcoming soon. I’ll take a stab at it when I can.
Having a chronic illness or chronic pain is life-altering and the stigma of invisible illness can be infuriating for anyone, but it can be especially difficult for teenagers. Sometimes the very people who are supposed to support and protect them — teachers, coaches, school nurses, doctors and even parents — don’t even believe them. (Sadly, many of you don’t have to imagine this scenario because you lived it.)
Psychology professor and Psychology Today blogger Nancy Darling, whose teen son has migraine, provides an insightful and touching take on migraine and chronic pain in teenagers.
Withdrawn, Irritable Teen? Is It A Migraine? points out that migraine often doesn’t look like migraine and that the associated absentmindedness, irritability and isolation can look like a normal “teenage funk.” She also explains why migraine looks so much like a kid trying to get out of going to school.
Children Who Go to School in Pain walks readers through a day when her son has a migraine. The most poignant part is “faking being well.” That’s right, despite the common accusation that the chronically ill are faking illness, many of us are actually faking being well. Whether you’re a teenager or adult, I’m betting that resonates with many of you; it certainly does me.
Please take a look at Dr. Darling’s posts. Even if you’re not a parent, the struggles she describes are important for everyone to be aware of. As a former teenager with chronic illness, I’m relieved to read about a topic that gets far too little attention.
A tiny fire started in my microwave last Friday and I didn’t catch it until the smoke rolled into the dining room. We were 20 minutes from leaving town for the weekend, so I set up the medical-grade air filter and figured the smell would be gone by Sunday night. Um, no. Although I never actually saw flames, the smoke damage ruined the microwave and permeated the walls and cabinets.
This was a minor household mishap — no one was injured and the damage is small and fixable. What I can’t get over is that I found the situation funny.
Really? Who reacts to a house that smells like smoke and days of cleaning with amusement? Yet neither daunted me. I could only see that my kitchen would be the cleanest it has ever been and that I might be required to paint the kitchen cabinets, which I’ve wanted to do for years. Isn’t that weird?
Trying to figure out the sources of my amusement led me to chronic illness. The many strategies I’ve learned to keep illness from subsuming me are useful for managing any sort of distress. A problem that doesn’t bring harm to anyone and doesn’t permanently damage my home just isn’t that big of a deal.
The fact that I actually feel well enough this week to do the work played a large role in my response. If I were relegated to the couch and had to smell the smoke without being able to do anything about it, I’m sure I’d be pretty frustrated. Still, this is the kind of thing that would have sent me into a tailspin even in the years before I got too sick to cope with the world. Being stuck on the couch this week would have been annoying, but I don’t believe I would have been fretful and distraught.
Chronic illness has given me so much valuable perspective. I’m not grateful for being sick and I will never say it is a gift, but after being so sick for so long, the minor inconveniences of life don’t matter all that much. I do appreciate the perspective.
Could stem cells reduce migraine or headache frequency and severity? Anecdotes and at least one study indicate they could be useful for migraine. They’ve also been studied for traumatic brain injury and trigeminal pain, according to James from Headache and Migraine News. Stem cells are used for a variety of inflammatory conditions, so their potential efficacy for migraine and headache is not unexpected.
Headache specialist Dr. Alexander Mauskop wrote about stem cells form migraine and headache last week, which is the first time I’d heard of the connection. He describes the research and why stem cells might be beneficial in an accessible and succinct way — far better than I possibly could. Read Stem Cells for Headache for the details.
Early stem cell research was done with cells from aborted fetuses, so it was highly controversial. Fortunately, stem cells can come from many different sources, including a patient’s own fat. Research into stem cells for a variety of conditions is exploding — I’m happy to see migraine and headache getting some attention.
Stem cells are definitely an interesting topic for research to explore, but this treatment is nowhere close to ready for widespread use. (I add that caveat because some companies who provide stem cell therapy do promote its use for migraine and headache.)
Despite my terrible experience last week, most of my experiences with doctors have been excellent. After such a negative post, I want to highlight some of the great doctors I’ve encountered.
There’s the doctor who held my hand, looked me in the eye and told me she’d never give up on me. That was nearly five years ago and I still tear up when I think of it. Her kindness and sincere desire to help were a beacon of hope when I was at rock bottom.
When I moved back to Phoenix, I saw a new headache specialist who spent two hours listening to my migraine history. Two. Hours. He seemed genuinely interested and didn’t talk about a treatment plan until he knew my entire story. He helped me piece together my history and see that my childhood illnesses were very likely migraine attacks with little or no head pain. The treatment plan he came up with was comprehensive and addressed all of my needs.
For a while I was seeing my current headache specialist and another concurrently. The secondary specialist started me on Lyrica and it caused me to have suicidal thoughts. That was the last straw for anticonvulsants for me, but that doctor still pushed me to try Topamax. My current specialist understood my reluctance and has never again suggested I try an anticonvulsant.
When I told my headache specialist how helpful DAO has been for me, he was thrilled for me. He didn’t care that it’s not a scientifically proven treatment, nor did he care that he wasn’t the one to tell me about the treatment, he was just happy that I’ve finally found some relief.
Those are the some of the biggest moments, but there are so many little things that add up to feeling like I’m well cared for:
- Being listened to
- Acknowledgement that my symptoms are both real and debilitating
- Being honest when they’ve reached the limits of their knowledge
- Not telling me they know exactly the treatment that will do the trick
- Not encouraging me to retry medications that I’ve had severe side effects from
- Asking if I want to have children (I don’t, but if I did, it would affect my treatment in numerous ways)
- Having respect for my writing about migraine (they don’t have to read it, but I do want them to acknowledge there’s value in it)
Last week’s doctor failed on every one of those counts (and I actually wrote the list months ago), but most of the doctors I’ve seen shine on all points. I’m tremendously thankful for the incredible care I’ve received from headache specialists.