catchin up

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catchin up

Postby phyrehawke » Sun Mar 25, 2012 11:00 am

Well I don't even know where to start, but I'm really missing Boots about now. And I see myself doing the same distancing from the group and I know that's not a good thing, but the past year really messed my brain function up and now that we are getting some of the severe pain under control I can at least communicate very clearly in writing again. At least I know my family will not be imposing any social distancing that I don't want.
But I'm definitely seeing the need to archive what I've learned so that someday when I'm gone other people can read that and keep using that knowledge to help themselves. It's one thing to read what the books say, and another to hear what the docs say, and something else entirely to hear it from somebody living with it and coping with it and figuring out ways to keep it from getting worse. And in some ways maybe the Asperger's helps because the pain accentuated the autism end of it this year and I can look at the data and see patterns more clearly than I could before.
And readers do keep in mind that what's wrong with me is post-traumatic SM, not SM due to chiari. I have borderline chiari but the neurosurgeon did a CINE flow study. That showed the CSF flow around the mild brain malformation was normal. Some radiologists rule it out entirely.

One of the things that Boots and I used to talk about years ago was Core Reflex Damage due to SM. It was when she lost her coughing reflex...that was the beginning of the end for her. These are reflexes the doctors never/rarely check for, unlike knee jerk reflexes. So when you lose them nobody notices, but without them you'll die of something. Good reflexes keep you alive, not just quick ones. Sneezing, coughing, jerking your hand away from a hot stove, throwing up when you have food poisoning...all reflexes that can get damaged by a syrinx, or a spinal cord injury...complete or incomplete. Boots made me realize that I'd lost my deep gag reflex years ago. I had wicked migraines and severe vertigo and hadn't thrown up with either, or with the flu, or for any reason in years. So she had at least given me a head's up on that before she dropped offline and then passed on. But I still sneezed and coughed and seemed to have all my other reflexes. Apparently March 2011 when I fell on the stairs here I ended up not losing but damaging another reflex I'd never heard of...a spinal cord pain reflex. It amplifies the feeling of a hot stove until you take your hand off of it, even though the stove isn't getting any hotter, the perception of it does. The broken pain reflex was amplifying all kinds of random (even non-pain) sensations. Like if my feet got too warm they would feel like they were on fire, literally. It did wicked things to neuralgia. I'm really kind of surprised it didn't drive me insane before they figured it out. (Hmm...maybe it did, lol)

So we got that under control and now we finally figured out my muscle spasms are of central cord origin, and I've been taking the wrong muscle relaxer for years. That's why I keep ending up with tears where the spastic muscles attach to the bones. For years the spastic muscles were continually the same, and after the fall on the stairs those areas changed. My pain PA said we had a choice of 3 meds and I may try all 3 (and get feedback from my massage therapist on how well she thinks they are working too) and then pick. It'll take months but I need whatever's going to work best for me on this long term.

The good news is that I've finally got the full range of motion back in my neck! It's a little slow and stiff but I can move it again finally. It's been years. I can travel a little bit again. We have the migraines and occipital neuralgia totally under control and I can't say how overjoyed I am about that! I have zero seizure-like stuff going on now (can watch tv/movies again), and I seem to be getting my ability to communicate back in little bits and pieces. My NL found me a pain PA who is sharp as a tack and actually listens and seems to care, and bit by bit we are getting the severe pain under some sort of control. I'm back to doing a little bit of artwork, but not quite back to weaving yet. I did lose my driver's license and still don't have that back yet. So things have been really rough this past year, and I've got some fragile progress but I'll take any and all progress at this point. Because if my pain level stayed where it was, it was quite literally going to kill me. Things are looking much better now.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: catchin up

Postby karenb » Mon Mar 26, 2012 12:02 am

Hi Rozanne,

It's good to hear back from you... I'm just sorry it's been such a rough year.

Forgive me for asking, but who is Boots?

You mentioned that they're getting your spasticity under control. Which muscle relaxer have they been using to get your muscle spasticity back under control?

Thanks for the update, and please keep us posted.

Karen
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Re: catchin up

Postby phyrehawke » Fri Mar 30, 2012 11:53 pm

Hi Karen,

The current central muscle spasticity med I'm currently on is zanaflex. I'm not giving it rave reviews, but it's better than nothing and better than the flexeril (which was basically same as nothing).

Boots was a friend with SM, who died a few years ago. She was mostly on the SM Yahoo Group I think? She Moderated there for years. She got really sick and was running a fever and nobody could figure out why...no cough so they didn't check for pneumonia until it had gotten really bad. She had aspirated some food and had lost her coughing reflex and nobody had noticed because that's not something they typically check for. They saved her initially, but she didn't do well afterwards and eventually another round of pneumonia got her because once those reflexes are gone to SM cord damage you don't get them back. She was a smart gal, with a level head.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Location: Southern CA

Re: catchin up

Postby Janice » Mon Apr 30, 2012 2:24 am

Hi Phyrehawk!

It's great to hear from you, as I've thought of you often, wondering how you were doing. So sorry to hear how terrible things had gotten for you. I couldn't call cause I lost all my numbers when my phone malfunctioned, then you were no longer on my FB friend list when I returned, and I couldn't recall if I had a chance to give you my new number. I rarely use email from my phone cause I don't get a list to choose people from, like I would on my laptop.

Sounds like you have a terrific group of docs on your case, I'm sure thankful they were able to help you. Also, I'm glad to see you back at ASAP. I'm still here but not posting much, at all. I'm in a bad way but had to respond. I'm on that *no driving* list w/you, so you're not alone, but I still have my license & this renewal (next month) is by internet so we shall see if I'll still have it (not that it'll matter).

Take care, love & hugs!
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: catchin up

Postby phyrehawke » Thu May 03, 2012 4:37 pm

Oh...I should probably post an update. So much has happened. Get ready for a rant, lol. I was one of those people who had a bad liver reaction to the zanaflex. I was on an opiate (methadone) for NMDA reflex pain control and I guess it stopped clearing like it was supposed to or something. For years I thought my gag reflex was gone and my NL told me it comes from so many different places...if it got triggered really hard it would probably work...well, it finally kicked in, and I got to opiate detox because my body was suddenly treating the methadone like it was poison. And I was a little mad at the pain clinic because they were really less than helpful. It took them a long time to get back to me. Thankfully I was not on a very high dose or for very long. Well, breathing is kinda not optional, and not breathing is exactly how people suddenly die on this medication. I'm pretty sure they didn't want a dead patient. Maybe I was more aware because when I was nursing I had a private patient on it. And maybe with a mild cord injury and asthma and cold season...and on a ton of glutamate blockers...I should've seen this coming? Because I've read a couple of clinical trials over the years where they trial new glutamate blockers on people with cord injuries for pain control and they end up with stuff like pneumonia and end up stopping the trial. That was basically the conversation that Boots and I were having years ago...that mother nature knew what she was doing making glutamate levels high in people with cord damage...to preserve reflexes like coughing and sneezing. You lower those reflexes with glutamate blockers to control pain, and you end up killing your patient when they get a cold and it develops into pneumonia very quickly and nobody notices because they never coughed or sneezed.

When I was taking several glutamate blockers I kept getting this really wierd feeling and it wasn't until I was off the methadone that I realized it was a suppressed sneeze reflex...because once off it suddenly I could sneeze hard again when I hadn't in a very long time! And I hadn't realized my asthma was so bad because all my coughing had been shallow. It wasn't the SM reflex damage that was suppressing my sneezing or coughing...it was too many glutamate blockers! I hadn't realized they could do that, but it made sense. A very high glutamate level is maybe all that allows us with reflex damage to have some of them? So now I am down from three (methadone, gabapentin, topamax) to just one...topamax at a lowered dose, and doing a lot better with that. I daresay my reflexes are really working right now. At least for aquired SM, we need to start thinking about coming at the pain situation from some other angle besides just glutamate blockers...look at *other* neurotransmitters, amino acids, fatty acids, etc.!! There must be more than one way?

I have a long slow hard road back to being okay, and if I weren't a determined fighter I wouldn't be on it. It was very tempting for a few days to just give up and stay on the meds, but it's not my style to quit life. My intention was never to end up in overall worse health than I started, but that's pretty much what I got trying to avoid the stubborn pain. Now we have a bunch of stuff to fix, and a much better understanding of the pain, and I've picked up a few tricks along the way...which actually makes it MUCH easier to live with this off the meds. But it ain't fun.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Joined: Tue May 13, 2008 3:23 pm
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