Sarah Blake LaRose (3kitties) wrote,
Sarah Blake LaRose

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update and feelings about migraines

I wrote on MOL last week that I was having difficulty with migraines and that I wanted to write out my feelings. I never got around to it until yesterday morning. Ken asked if I had ever tried taking Topamax, and that left a pretty wide open door for me to write everything about the migraines. Well, almost everything... There were some things I did not include--some are things I don't really know how to describe. Some are just things that bug me, and some are things that scare me even more than what I wrote about.

I didn't write about the weird jolt sort of sensation I experience sometimes at the onset of the migraine. I didn't write about the severe disorientation, muscle weakness, almost constant flashing lights, or occasional loss of consciousness. No one seems to believe that. But isn't that what it's called when you realize you don't know what's gone on for the past five minutes or so?

Anyway, here's what I did write as a general update on all my issues

As soon as Medicaid kicks in here, I'm back to the doctor re the migraines. I've never tried Topamax, although I've tried other antiepileptics, tricyclics, calcium channel blockers, and SSRIs with not a lot of success. I do fairly well on supplements until the weather starts changing (as it is doing wildly in Indiana right now). I do think I may have a shot at a doctor who will listen to me here, so my hope is to tackle this as soon as I have Medicaid. I want to first have some idea of what my migraines are doing here in this climate so I can have an idea whether something is really working or whether I'm just having natural improvement because the weather is better. That sounds so kooky, but it's true. I do still want my MRI results explained to me in detail. I know that's all stuff that's not "fixable," but part of what empowers me is understanding the condition my body is in. If something is going on that explains some of the losses of functioning that I've had over the past few years, I'd be more at peace knowing about it.

Now what exactly is going on with me...? I have a feeling that's your next question. My eyes are the least of my concerns at the moment, although I do plan to act in that area eventually as well, too. I don't remember if I posted here about my trip to Jacksonville to see a doctor who's working with artificial corneas. He seemed to think I might be a good candidate for the procedure, but now I'm across the country. I'm planning to get my report from him and find someone here in Indiana who's doing similar work. I think that may be possible--and maybe if we pray real hard whoever it is might take Medicaid. For now my eyes seem to be relatively stable despite some fluctuations in visual functioning which I've mostly gotten used to. No eye doctor can explain this, and I actually suspect the culprit is migraines. I've read recently that uncontrolled migraines can damage the visual processing areas in the brain, and I wouldn't be at all surprised to find that this has been happening since I've had poorly controlled migraines for so long. I'm able on most days to locate doorways and pieces of furniture if I make a point to look for them. Most of the time I choose not to make the effort. Sometimes I can see an object--commonly found objects include boxes, books, cats, etc. Very occasionally I can find a small object (like a sock or shoe). Most of the time I choose not to make the effort because my eyes tire very quickly. (Or is it my brain tiring?)

My hearing fluctuates, too. My aids help, although I'm selective about when and where I wear them. the fluctuations are directly related to the onset of migraine--in fact, decreased hearing is usually one of the first symptoms. So when I can't stand functioning without the aids (vs. just preferring them), I know that the migraine is on its way. No one has an explanation for the hearing loss, either.

I experienced severe vertigo associated with other migraine symptoms during the summer. The vertigo has become more frequent and more severe since then. This is something I'm having a lot of difficulty with because it's limiting and people don't understand it. They can't see that something is wrong, so they walk on at normal speed through open space and it's very hard for me to keep up. I'm ok on some days, but on other days I do a lot of staying in bed and holding on to things for stability. I wish I could just forget it and go on--pretend it isn't there. But it's pretty hard to pretend when you take a dive anytime you move.

I'm also experiencing a lot of memory and concentration problems. I'm keeping a lot of to-do lists, leaving files open on the computer because I forget the name of the file, etc. In between migraines I'm trying hard to develop a better organization scheme. That's something I've never chosen to do even though I know why it's helpful. "Organized clutter" has always been my motto, but I'm not doing well with organized clutter anymor. I don't like any of this stuff I'm writing about... It terrifies me. How can I maintain my "adultness" when I'm losing some key abilities? I had talked about this with Christy while I was living in Florida, and we had talked about having someone come in to do some of the physical things I was having difficulty with under supervision or just be available to fill in gaps I couldn't do. For instance, I've thought that I can do some cooking tasks sitting down, but if it's a day when I'm not thinking clearly I don't feel that it's a good idea for me to be chopping veggies regardless of whether I'm sitting down or standing up. But it's very important to me to be able to do as much of my own meal preparation as I can reasonably do. It's something I *need* to do both because making my own food is one of my methods of migraine control but also because cooking is something I enjoy and take pride in. But my main point here is that I still want to live fully. I want to be a wife and a mother, and I want to teach Bible study groups and do my writing... How can I do these things--and especially how can I do them if these limitations keep getting worse?

I've managed to come to terms in most ways with the issue of work. I'm willing to accept low income life. It's not what I want, but I'm willing to tolerate it most of the time. But I have a huge amount of student loans that I'd like to pay off, not just pay token payments on to keep myself out of legal trouble. The only alternative is having a doctor sign off that I am permanently disabled by migraines. I am terrified of that. It means having him answer no when asked if I can ever do any type of work. In some ways, I feel like that means there's an unwritten stigma/prognosis there. "This person must spend the rest of her life having everything done for her and is completely unable to handle any type of responsibility." What would that mean for my dream of having a family...? Just writing it makes me want to scream and cry.


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