Personalish update stuff

Standard

I’m feeling a fair bit better. The combination of Lyrica and Trileptal is doing something strange, which is that even though they’re causing the usual drowsiness, exhaustion, and double vision, they’re also making me think and translate to words clearer. Also meaning that even if I fall asleep in the middle of a sentence, I’m still more likely to write what I was meaning to write. And that thoughts stay put more often and don’t need to be forcibly shoved into place. And the seizures I was having from the pain meds have vanished, and some of the pain is also lessened. I also don’t get a weird feeling whenever I step under fluorescent lights, although I still don’t like them.

My mother is here:

My mom, my dog, and me sitting on the couch

She’s going to stay here until I get a little bit more adjusted to the meds, since right now I’m falling asleep all the time and falling over when I try to walk and so forth. (But I’d still rather stay the way I am now and just adjust to it, than be without the side-effects but also with all the pain and thinking restored to how it was before. One of those weird tradeoffs.)

I’ve got a lot of ideas for posts, I’m just waiting to have the energy to post them. I’m for once fairly confident I’ll be able to write them once I do have the energy, though.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

23 responses »

  1. So glad to hear of the improvements. I hope you find a good way to manage the side-effects and that you have a nice time with your mum.

  2. Trileptal??

    Now haven’t I told you to be careful with them anti-epileptic meds???

    But, in any event … I hope they do find some combo that lessens the pain but doesn’t turn you into a complete zombie. Seems like just about ALL the anti-seizure meds do a total number on some of your higher cognitive capabilities.

  3. Well, it’s not exactly my higher cognitive capabilities that are compromised here, it’s just my ability to stay awake in order to use cognitive capabilities that seem improved on these meds. :-P

    And, yeah, there’d been prior to this only one anti-convulsant I could stand to stay on, which fortunately did lessen pain and seizures greatly. These lessen pain even more, and make me think clearer, they’re just knocking me out. I’m hoping this side-effect will fade to something more manageable with time, though, because I’m tired of falling asleep in the middle of… well… just about everything. Now I know how my brother feels, but for different reasons (he has severe enough sleep apnea that during the day he’s falling asleep in the middle of conversations).

  4. Can you tell if the sleepiness has been happening any less than right before you started those meds? Could it be that the sleepiness might be a reaction to you having more ability to think clearly, at a level that you were not used to for some time, and that is taxing you? Could it be that your body and mind are going through change, even though it’s POSITIVE change, and that’s tiring? Could it be a combination of those things or something different entirely?

    hi there, Amanda’s mom……….that picture of you two and BJ is awesome!

    What region is in the map on the wall? I love maps………

    Athena

    ps. The Integral, Ivan, and Dennis send hellos and purrs respectively.

  5. Just a thought: Maybe the improved cognition is a side effect of the pain relief? I’ve never had pain issues anywhere near the levels you’re describing, but I’ve found classes are a lot harder if I have a migraine. And I am somewhat familiar w/ being in pain for long enough that lack of pain is a strange, new (yet wonderful) state. Good luck, and I hope your situation continues to improve.

  6. I’m glad that things are improving for you! I take Lyrica, and I found that the drowsiness did go away after a little bit, so I hope it does the same for you.

  7. Glad to hear you’re feeling better. I hope the sleepiness becomes more manageable, and that you can enjoy some time with your mom. (Hi, Amanda’s mom!)

  8. FWIW you’ve gotten further on Trileptal without, like, injuring yourself than I did-proprioception, what’s that? And the sleep MIGHT be your body saying “holy wow I can FINALLY after 20some years GET REST!” and catching up?

    You ‘sound’ better. It’s about time something worked.

  9. I am wondering…I am newer to your blog….have you always had seizures? My daughter has them too and we are always having a difficult time finding a medication that works. She has been on Trileptal too. Have a wonderful time with your mom.

  10. Kassi: I wouldn’t speak so soon, I’ve got bruises all over the place from falling because of this stuff, and any lack of injury beyond that is either (a) because I don’t dislocate as easily as you do or (b) because my mom’s been around to catch me (which she’s had to do several times).

    In general, I’m also not pain free, or even close to it, I’ve just got far less pain than before.

  11. Hi, Mom! :D Hi, BJ! :D (waving)

    Is that photo from yesterday? Amanda, I’ve gotta say, even though you look a bit woozy, you look pretty good.

  12. I’m so glad you’re feeling better! I use a cane around the house whenever I get vertigo; don’t know whether that’s a good option for you, or whether you just use your wheelchair… Anyways, happy for you, and hope this continues!

    Who’s the dog? Yours or your mom’s? S/he looks so very houndy… I love hounds; Mercy, my first dog friend ever, is a foxhound mix, and she’s intelligent and loving and can run forever.

  13. good luck on the new meds. I’m glad you are feeling better. I just started taking Lyrica myself… but haven’t felt much of an effect. I think I’ll get “upped” next Dr. visit. Hi to your mum!

  14. Hi Amanda, please keep us updated as to how you are doing with the Lyrica. I have lupus and FM and am in constant pain, and I’m looking for something new. The Lyrica is still so new that it scares me though, so please do keep us posted.
    All the best to you,
    Jill

  15. If the pain isn’t neuropathic in origin, I strongly urge you to not bother.

    Just saying this because anti-convulsants like Lyrica are being overprescribed for kinds of pain they don’t even treat, because doctors know that NSAIDs have their limits safety-wise and they’re paranoid about opiates (which are often safer than either NSAIDs or anti-convulsants for long-term use, provided they’re used properly, but they’re terrified of turning out addicts or something).

    So it would really depend on the type of pain. If your pain is neuropathic in origin, some of the anti-convulsants can work wonders. But if it’s not, then it’s really not worth waiting through the head-muddled effects you get at the beginning to find that it doesn’t do anything.

    (I am online right now because I’m backing up a really large hard drive for a reinstall, and most of the backup is just waiting. I’m on my 37th DVD-ROM and beginning to see the end in sight. And I’m not even actually backing up the whole hard drive, just the important parts that I wouldn’t want to lose, or it’d be even worse than this.)

  16. sounds like oodles of fun, Amanda…..

    muskie (or someone with admin rights)needs to fix a link on the autistics.org site for second life…..

    http://www.autistics.org/secondlife,html

    should be

    http://www.autistics.org/secondlife.html

    (changed comma to period in the second one)

    and now her MySQL tutorial stuff links are not working either…..under the “autistics.org project” section. sorry for being off-topic, just wanted to let you know……

    TI

  17. ms. baggs, someone posted a link to a video you made about your language. so right on!!! i have often thought how moronic people are to assume that WE are the superior creatures, meanwhile gorrillas, chimps, dolphins, parrots are all smart enough to learn communication techniques of humans and we have not learned any other creatures languages. glad you are in the world. eve b.

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