Susan, what time every day do you take your baclofen? Also, how old
were you when TM hit you?
Janice
From: Susan Kleinz
Sent: Tuesday, June 26, 2012 10:42 AM
To: Bridget Skinner
Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com
Subject: Re: [TMIC] Looking for input.
Hello Bridget and all.
Susan Kleinz here - Phoenix, Arizona
Today it is going to be 113!
The heat is hard, but the cold is worse for me.
I have been on baclofen for 22 years. It has saved me from painful spasms.
I take it every six hours.
neurontin also helps me. I take it 3 times a day.
Also Zoloft and Savella.
I know you can get the spasms under control! you must!
This is a strange disease, and I personally don't like talking about it to
outsiders.
I am grateful to have this website, otherwise, I might give up.
I feel sorry for my husband, who didn't "sign on" for a sick wife.
I have constant band pain and lower back pain. wa wa wa....
I try not to get down.
Good luck! you must be your own advocate.
love,
Susan
On Jun 25, 2012, at 5:16 PM, Bridget Skinner wrote:
A question is coming I promise:
I can relate to all of these different sensations. I live in texas and am
terrified about the cold weather which won't be coming for quite sometime, but
it scares me. Maybe that's because it was so cold when in was diagnosed and my
hands would feel completely curled up in a ball and while I could pick things
up I was unable to set them down.
I take Baclofen for the spastiscity and muscle spasms and I am so thankful
that it takes care of that type of pain. After being paralyzed and having to
learn to walk again the feeling that was coming back was pain I had never felt
before and was so hard to describe.
As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and
Lyrica at different times and can try to give a description as to how one works
better than the other.
My problem is that the Neurontin takes care of most of nerve pain but my
hands continue to twitch and when I wake up in the morning my feet and ankles
have such a horrible sensation that I feel like I need to go to the hospital -
it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to
after the time I spent there - a month was long enough for me) Has this
happened to anyone.
Another question: Has anyone had any convulsions or seizures when they wake
up? Not sure what to call them but whenever I wake up, no matter what time, My
head thrashes forward than back a few times and it almost seems I have no
control over my body. I have to hold onto the ceramic part of the sink so I
won't hit it. I have already hit the bridge of my nose and chipped a tooth in
doing so. I don't know what to call this but I have made an appt with my
neurologist but can't get in until August 1 and am really scared.
Also, I have a problem urinating. I have to push really hard no matter how
bad I have to go.
In conclusion, I would really like to know what works best for nerve pain,
whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of
my legs. I should be grateful that it works that well, it is much better than
what I went through before the scripts were ordered. But am curious about
Lyrica. My neurologist mentioned it as an alternative but as I said the
neurontin was working so well(other than the lower half that I didn't want to
change anything.)
Thank you for listening - I know we all have different experiences with our
own Transverse Myelitis and I appreciate your time. Wish I could find a
support group nearby. While I can't donate just yet I will be able to do so in
September and it will be very worth it.
On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols <jan...@centurytel.net> wrote:
I would start with Baclofen first - I think it works great. You need
to take all through the day, morning, noon and night. It really does help a
lot.
Janice
From: Elizabeth Clark
Sent: Monday, June 25, 2012 2:36 PM
To: 'Janet Dunn' ; tmic-list@eskimo.com
Subject: RE: [TMIC] Looking for input.
Coincidentally, someone from a different TM support group recently
expressed similar difficulty and here’s a response that may be of help…
>
> “Hi all,
> I am new to this group and was hoping you folks could give me some
advice. I am recovering from transverse myelitis. I was unable to walk for six
months and had complete paralysis from the waist down for three months. I am
now able to walk again, but have severe hypersensitivity to hot and cold and
get stabbing pain in my legs particularly at night. What do some of you do for
the pain? I am looking to avoid narcotics and habit forming medications. Any
advice you have would be greatly appreciated.”
-----------
“My relief came from flexeral (sp) which helped the spasms and cymbalta,
which helped with the neuropathic pain. When I get localized brutal nerve pain
in my spine (rare), only tramadol helps.”
From: Janet Dunn
Sent: Monday, June 25, 2012 12:29 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Looking for input.
Hello Everyone - not sure who is on here anymore.
I have written in before, several times in fact, bemoaning the issues that
I have with the cold cold winters that we get up here in northeastern BC.
Now, it is the heat. My question is this: does excessive heat cause
issues like the cold does? I have never noticed it before, but this year I
quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter
what I try. I am wondering if stopping the lyrica has contributed to the
increase in pain, or if it is heat related?
Thanks for your input.
Janet
