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Jun 7, 2013

Coping After Meningitis, A perspective

There is no test for migraines/headaches. Doctors have to rely on the patient or caregivers for this information. You have to advocate for a neurologist who is educated in meningitis.

I started with Imitrex as a migraine aborter. It helps, but sometimes the migraine is persistent. There are prednisone tapers that help with the migraines too. There are drugs that push the migraines further apart, amytriptyline and topomax. I also take zofran/onadesteron for nausea and flexeril for muscle relaxation when too tense and unable to unclench my muscles. Then there is the breakthrough pain med that is a narcotic. I take it when the others aren't working and it's before time to take the next dose.

Wearing sunglasses in bright light or florescent lights with a hat is an accommodation I've figured out. Florescent lights are a trigger for the migraines. The dark glasses keep the florescent light from going in my eyes. The hat keeps the florescent light from going over my glasses and into my eyes. I tend not to get a migraine on the times I wear both while under florescent lights.  Is it a perfect system, no, there are still times I get migraines even with the glasses and hat.

Strong smells, raw green pepper, and bright sunlight are also among my triggers. It is good to try to notice if there's a time of day, after a repeated activity, or some other pattern to the headaches. I also rate the headaches. 0-no headache, 1- mild take nothing headache, 2- medication for the headache, 3- knocked on my back, pausing life, headache. I typically have 2 and 3 level headaches.

I don't know if you've joined a depression support group, chronic headaches can be co-morbid/ co-occuring with depression. For that, zoloft is a good mood stabilizer, and amytriptyline will help to get to sleep at night helping to reduce the concurrent fatigue, while also pushing apart the headaches.

Teaching and learning about coping skills are a great thing to do. There's paying attention to what's in the room (how many tiles are in the ceiling, how many blue/ white/ purple things can you see, have the person feeling unsafe describe the room she's in) this is a good distraction technique. Also, deep breathing and yoga does wonders for the body and for being able to cope with pain and stress. Any kind of exercise does, but yoga because it focuses on the breath gets you remembering to breathe. When we get all tense, our breathing gets shallow, heart rate increases, and blood pressure skyrockets. By deep breathing, we initiate the relaxation response and tell our bodies that they are safe.

Learning how to instill a sense of safety is key to stopping the self harming. Even just repeating, "I am safe. Today is Monday. I have to go to school/event" can be enough to bring on a sense of safety.

Pain is not constant, and it is just a mental event. Think of when you stub your toe. You really move it suddenly, with lots of pressure and force. That is what the body notices. It sends those signals to the brain, where we interpret the messages as "Ouch!!!" This happens really fast. But, the pain doesn't happen until the signals are in the brain. Now, with a headache, the pressure/ tightness/ achy feeling are physically in the meninges. So, the signals have even less distance to go before being interpreted. My mantra during bad times, is "Pain is just a mental event."

All headaches occur in the meninges. In meningitis, the meninges are swollen and tender like a twisted ankle, just in the head. The meninges are also the shock absorbers of the brain and spine. They are just under the skull and cover the entire brain and spinal cord in a protective layer.

With the brain, injuries take a long time to heal. My neurologist said that the first 6 months there's lots of healing, the second 6 months still lots of healing going on, the third 6 months less so, and after that healing levels off.

I'm at 21 months. My meninges are paralyzed from the severity of bacterial meningitis when I was taken to the hospital. I almost died. There are cognitive, perceptual, physical, and behavioral changes associated with the meninges having been infected and possibly damaged.

A thing like cutting, or not taking showers, or other self harming behavior is your coping mechanism. And, self harming coping mechanisms show a need to learn new skills for coping. Anger is a valid emotional response to this, harming yourself is not. I am in that process too.

Knowledge is power. Share this with the affected one and let her take it in slowly or voraciously as she is able.

It does get better. I had constant headaches at discharge in 2011. My present 66% is a 33% improvement. I have come a long way. I learned a lot about meningitis from WebMD and the Mayo clinic.  Both have good online resources. You can investigate the physical changes of meningitis in addition to looking up medications and a host of other things.

I just joined Daily Strength, an online support group forum, as there are no support groups for meningitis here in Maine that I could find.  I have been wanting to reach out and share with others like me.  I don't want to be alone, the only one I know with this disease, so I joined their support groups.

A great writer on grief, which is part of what we all go through with this diagnosis, is Elizabeth Kubler-Ross. She wrote about the five stages of grief, but never meant for them to be understood linearly. Life, and grief, is messy. We have grief for what was compared to now, for what changes our life will have to go through, and for the drain on our persons from the debilitating effects of living after meningitis. Whether that grief is recognized or not, it is there. Her writings may prompt conversations with your friends and family members about what you grieve over from this incident in all of your lives. Wikipedia is a good place to get the basics of her views on grief, or her book On Death and Dying.

So, what are some ways you cope with things that feel out of your control?  How can you gain some tricks to distract yourself from the pain?

I know meningitis sucks, but without it, I wouldn't be here now, and here is pretty good when I can ignore the pain, migraines, and my other co-morbid issues.  I hope the same for you.