Sunday, December 12, 2010

Polka Dot Winny

Ready For A New Week

I have been on a downward roll lately.   I hope that I have reached the nadir of my bell curve and am hopefully starting the long climb upwards again.  I am going to see the neuro practice tomorrow and then try to go back to work tomorrow afternoon.  The sun will be shining, the weather will be great, and my body will be cooperative!

Tonight I am hiving, polka dotted all over.  I don't know how many of you have hives, but sometimes they actually hurt and sting before they pop out.  Today has been one of those days.  Almost like being bitten by ants here and there, but there aren't any ants.  I did eat some animal protein today, but it was a piece of turkey bologna chopped up with some pickles to make a low fat mixture I put in a sandwich.  No mammalian meat, so I can't blame the polka dots on that!  I don't think the cyclosporine I am taking is doing the job.  I have another appointment with Dr. Calm the week after Christmas but not sure if the spots can wait that long before instigating another anaphylactic episode for a non-mammalian meat reason!  I  will anti-histamine up this evening and see what is left of my spots tomorrow.  Maybe I need to stop all milk products???

The pain is constant now from The Legs and pelvic areas.  I am off any pain medication or muscle relaxers at the moment, having tapered myself off.  I have also been very careful not to aggravate my issues by doing much with The Legs the last two weeks.  My brothers even went grocery shopping for me!  So nice of them (especially in this cold!).  I'll see what NP for Dr. Kildare the neuro says tomorrow.  I can't do Cymbalta or Lyrica (Cymbalta think Rocky Balboa sweating during a heavyweight bout, Lyrica think Linda Blair in the Exorcist) and have not tolerated neurontin.  Elavil and that class of medication aggravate my myoclonus (apparently I was born with that) so I won't take these.  Not sure if there is anything much left for nerve pain in these classes.  Real pain medication I have the real issues of itchiness and hives, and the fact that The Headache really doesn't like it. Arrrrgh.

I simply just won't think about it now.  I'll think about it tomorrow. After all, Tomorrow Is Another Day!


  1. Hey Emily... I'm really sorry to read this and know how miserable hives are. Have you ever gone to a naturopath? My sister was so sick we were worried we were going to lose her and she is making an incredible recovery. She's on a special diet. The doc is in KC. Would it be helpful for me to get her contact information? Be well dear friend...

  2. Ang: I tried working with a local naturopath and an accupuncturist a couple of years ago but didn't seem to make much progress. But they didn't do any better or worse than the main stream docs!

    My main issue with KC is the three hour drive there and the drive back. Otherwise I would be interested! I did have several specialists at KU med ctr. there but have moved all of that locally since I am having difficulty making it 35 miles into work lately. :(

    Nothing that is wrong with me is that awful, mainly pain and weakness, not life threatening, its just that I seem to be the perfect storm of weird! So when I start adding them up and they hop on me all at once like the last few weeks I get mighty whiney.

    I'll just think happy thoughts of bright night time stars, crunchy snow, warm fires, pine trees and wolves crying in the wind! Wait - that sounds like at night at your B&B in the winter!

  3. Lyrica is weird with the side effects. When I was on a slightly higher dose than I am on now I was afflicted with the worst muscle pain and migraine ever... like a total 10. Could not move, could not get up, could not find anything to relieve it. I thought what a freakin horrible thing to take for FMS when it actually causes a huge muscle pain flare everywhere. But with a decreased dose, spread out into three doses a day, it is way better and I do not get the grogginess in the morning... well I do now because of the new med, but at least I got the Lyrica straightened out. Now Cymbalta I totally blame for my suicide attempt, because it made my poor mood worse and then worse again. Nasty stuff. I know there are other anti-seizure meds for pain because my neuro discussed it with me, as some don't conflict with Lyrica, but I can't remember their names. Hopefully your neuro can suggest one... but I know what you mean with the side effect hell and sometimes a med helps with one condition while making another one worse.

  4. Myth: Thanks!! Totally get it with these making depression worse. My family was afraid for me when I was taking Lyrica, and depression has never been an issue OTHER than when on Lyrica.

    With Cymbalta I got serotonin syndrome, which ended me up in ER 3x grossly dehydrated and the neuro (since fired) had no clue, and finally an ER doc wised me up.

    With Lyrica it worked great for the pain, but when trying to titrate up to a full dose, I had what was described as a "central brain" reaction. Because these drugs bypass the blood brain barrier and act directly on the brain, there is no antidote or way to flush it out of your system. I was so out of character the second day at almost a full dose my family intervened and got me to an ER because I was full bore crying, yelling, shaking - sorta possessed by Lyrica. The ER doc said for people with this reaction all sensory input is hugely magnified, valiumed me up sent me home to wait out the reaction (took 3 days to get it out of my brain).

    I've tried a few others, neurontin (the precursor for Lyrica), lamictal (no go), tegretol (uh uh), topamax (tippymax), lithium (when they though I had cluster headaches), clonazepam (made The Headache worse), dilantin (which actually helped my migraines but accentuated my myoclonus), and depakote (which helped my migraines but I am still carrying the extra weight I gained 20 years ago).

    I have read of using naltrexone in ultra low doses to stimulate the natural pain releaving mechanism of the brain, and know a couple of people using it that have had great success. It is normally an opiate agonist used for drug withdrawal and is non addicting. It is supposed to help autoimmune disease also. Always worried about miracle drugs (I haven't found any myself)

  5. Dear Winny, I hope things have spiraled up for you a bit. The pain subsides. Here with you. Yes, after all tomorrow is another day. You know I have never seen Gone With the Wind in its entirety. Never had the desire to.

  6. I saw it on one of its last theatrical releases in the late 70's early 80's. We thought it was really great special effects with Atlanta burning in the background before the intermission but it actually was the very very old film burning up in the camera!!!!! :)
    I'm a Clark Gable fan!

  7. Argh, I'm so sorry! I've never had hives, but they sound just awful. I also hope you're at the bottom (top?) of the bell curve & that tomorrow will be a BETTER day. :)

  8. Emily: Hoping you NEVER have hives! I never had them until I got old...sigh.

    Tomorrow is ALWAYS a better day!!!