Allen.Marker@f81.n105.z1.fidonet.org (Allen Marker) (03/12/91)
Index Number: 13894
[This is from the Spinal Injury Conference]
Hello peoples. Its been a bit since i've got on this echo but lately i've
been having alot of trouble with spasms(as do we all) and pain. The pain i
think is from the fusion of c6 and c7 but its made my right side highly
sensitive to any sort of pain. My left side seems to be duller and that help
alot when i have to have shots but the spasms are getting out of control.
They have tried all the antispacmatic meds around and the only thing that
seems to work is valium. They want me to take 80mg a day but thats way too
much as far as i'm concered. Liorasal makes me sick,dantrilin does do
anything at all so i was wondering is anybody has found somthing that works
well or at least keeps them in check. Any feedback would be greatly
appricaeted. The only option left is some sort of inplanted pump in my side
with a direct line into my spinal chord and i wont go that route. And i dont
really want to get addicted to valiums so if anyone has some suggestions
please let me know ok? Thanks alot
Allen Marker
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!81!Allen.Marker
Internet: Allen.Marker@f81.n105.z1.fidonet.orgJean.Prophet@f33.n371.z1.fidonet.org (Jean Prophet) (03/12/91)
Index Number: 13897 [This is from the Spinal Injury Conference] > Hello peoples. Its been a bit since i've got on this echo but > lately i've been having alot of trouble with spasms(as do we > all) and pain. The pain i think is from the fusion of c6 and c7 > but its made my right side highly sensitive to any sort of pain. > My left side seems to be duller and that help alot when i have > to have shots but the spasms are getting out of control. They > have tried all the antispacmatic meds around and the only thing > that seems to work is valium. They want me to take 80mg a day You are NOT in the boat alone .... The Doctor now has Buddy (my other half) on Robaxin ... Buddy doesn't think it working very well. The Baclofen (aka Liorasal) worked much better. He used to take 10 milligrams in the AM and 10 Milligrams in the evening time. Valium helps a little but 80mg is MUCH to MUCH. What you decribe as far as spazms and feelings etc are exactly what Buddy expierences (C3,4,5,6 problem). > but thats way too much as far as i'm concered. Liorasal makes me > sick,dantrilin does do anything at all so i was wondering is > anybody has found somthing that works well or at least keeps > them in check. Any feedback would be greatly appricaeted. The > only option left is some sort of inplanted pump in my side with > a direct line into my spinal chord and i wont go that route. And > i dont really want to get addicted to valiums so if anyone has > some suggestions please let me know ok? Thanks alot Were you taking the Liorasal with Food .... that makes quite a difference in helping with the nausaus feeling. Or prehaps take it with milk (if you can stand that). The implanted pump you are talking about pumps Bacolfen (Liorasal) directly into your body as it is needed. Why not try the Baclofen again (most here are taking it) ... Take the medication with food .... expierement with the dosage (that's what our doctor told us to do) ... Spazms will still happen once in a while - I don't think that can be avoided completely, but it did help Buddy. He is taking to Robaxin on a 'trial' period (just to make this NEW doctor happy <grin>).... but Buddy feels that the Baclofen worked the best. Good luck ... let us know how you make out. Jean -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!371!33!Jean.Prophet Internet: Jean.Prophet@f33.n371.z1.fidonet.org
Allen.Marker@p0.f14.n105.z1.fidonet.org (Allen Marker) (03/16/91)
Index Number: 14004
[This is from the Spinal Injury Conference]
Thanks for the feedback. However i quit using when i was 15 or
16. It made me horse so i couldnt sing.(i was in a band). I have
asked the doctors and they dont have much of an answer. May i
ask what is your injury level? The reason i asked is mine is
c6-c7 but i dont act like it. I have alot more use of everything
than someone should have at the level. Believe me i'm not
complaining but it somehow seemed to higher my sensitivty to
pain and spasms on the right side of my body,and deading the
left side a little. I dont know if this is normal"what the hell
is normal anymore" and there arent any people around me in
wheelchairs to ask about such things. And i've found that the
doctors really dont understand what we go through with the spams
and pain. I can handle most of the pain but not the spasms. And
for some reason the doctors dont want to precribe(sp) anything
really strong or even valium even though its the only thing that
works. Well anyway thanks for the talk and please feel free to
write to me again. I will answer all mail as i am home most of
the time now. Take care and stay well.
Allen Marker
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!14.0!Allen.Marker
Internet: Allen.Marker@p0.f14.n105.z1.fidonet.orgJean.Prophet.......@f33.n371.z1.fidonet.org (Jean Prophet ) (03/16/91)
Index Number: 14008 [This is from the Spinal Injury Conference] > Hello peoples. Its been a bit since i've got on this echo but > lately i've been having alot of trouble with spasms(as do we > all) and pain. The pain i think is from the fusion of c6 and c7 > but its made my right side highly sensitive to any sort of pain. > My left side seems to be duller and that help alot when i have > to have shots but the spasms are getting out of control. They > have tried all the antispacmatic meds around and the only thing > that seems to work is valium. They want me to take 80mg a day You are NOT in the boat alone .... The Doctor now has Buddy (my other half) on Robaxin ... Buddy doesn't think it working very well. The Baclofen (aka Liorasal) worked much better. He used to take 10 milligrams in the AM and 10 Milligrams in the evening time. Valium helps a little but 80mg is MUCH to MUCH. What you decribe as far as spazms and feelings etc are exactly what Buddy expierences (C3,4,5,6 problem). > but thats way too much as far as i'm concered. Liorasal makes me > sick,dantrilin does do anything at all so i was wondering is > anybody has found somthing that works well or at least keeps > them in check. Any feedback would be greatly appricaeted. The > only option left is some sort of inplanted pump in my side with > a direct line into my spinal chord and i wont go that route. And > i dont really want to get addicted to valiums so if anyone has > some suggestions please let me know ok? Thanks alot Were you taking the Liorasal with Food .... that makes quite a difference in helping with the nausaus feeling. Or prehaps take it with milk (if you can stand that). The implanted pump you are talking about pumps Bacolfen (Liorasal) directly into your body as it is needed. Why not try the Baclofen again (most here are taking it) ... Take the medication with food .... expierement with the dosage (that's what our doctor told us to do) ... Spazms will still happen once in a while - I don't think that can be avoided completely, but it did help Buddy. He is taking to Robaxin on a 'trial' period (just to make this NEW doctor happy <grin>).... but Buddy feels that the Baclofen worked the best. Good luck ... let us know how you make out. Jean -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!371!33!Jean.Prophet....... Internet: Jean.Prophet.......@f33.n371.z1.fidonet.org
Allen.Marker@p0.f14.n105.z1.fidonet.org (Allen Marker) (03/16/91)
Index Number: 14015
[This is from the Spinal Injury Conference]
Thanks again zack. I am a para though and still am very active.
I still teach martial arts and the valium dosent seem to affect
my mental state at all. I usally take about 10 or 30 mg. a day
sometimes not at all and sometimes more. I only notice that the
spams are less violent and almost non excitent.(sp) I do need a
different cushioun though put they are so damn expensive and i
really dont know that much about them. What is in that book from
the spinal cord injury foundation? It sounds like something i
would be interested in looking into. I do agree that the plus
side of violent spasms are that the leg muscles are still in
good shape and a few days agao a neroligist(sp) wanted me to go
to a place here called R.E.O. and he thinks that i can walk
again. Maybe not all the time and maybe not without some sort of
canes or walker(though i dont like that last idea) but still
walk. God just to be able to feel the concrete under my feet
again ....Well i dont want to get crushed again. It took a LONG
time to get to where i am now with this chair life and to try to
change it a fail would be really hard to handle. But i think i
will at least give it a shot. School can wait another few months
and who knows I may just beat the system(-: I live in portland
oregon. Where do you live? I have almost total feeling in my
legs and can move them and my toes alot. It seems to be coming
back more and more even though the doctors said it woulndt. I
would like to ask you some real personal questions .Things i
need to know that only someone like me can answer. If you
wouldnt mind could you send me some mail through the email
system so that it will be private? I would really like that alot
but if not i guess i could understand. My netmail address in
case you do is as follows
To:Marker@busker.fidonet.org
Send it through the uucp gate and it will find me. Thanks for
listening and talking to me so far. I really needed it. Anyway
take care of yourself and let me know how old you are if thats
ok and whats going on in your life. I'm 33 now and have been in
the chair for 8 years. I still dont have alot of the answers to
alot of questions!!!!! Bye
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Internet: Allen.Marker@p0.f14.n105.z1.fidonet.orgbarner@ee.udel.edu (Ken Barner) (03/16/91)
Index Number: 14053 In article <18053@bunker.UUCP> Jean.Prophet@f33.n371.z1.fidonet.org writes: >Index Number: 13897 > > > My left side seems to be duller and that help alot when i have > > to have shots but the spasms are getting out of control. They > > have tried all the antispacmatic meds around and the only thing > > that seems to work is valium. They want me to take 80mg a day > > You are NOT in the boat alone .... The Doctor now has Buddy (my >other half) on Robaxin ... Buddy doesn't think it working very well. >The Baclofen (aka Liorasal) worked much better. He used to take 10 >milligrams in the AM and 10 Milligrams in the evening time. Valium >helps a little but 80mg is MUCH to MUCH. What you decribe as far as >spazms and feelings etc are exactly what Buddy expierences (C3,4,5,6 >problem). I'm surprised 20 mg of Liorasal does anything. I take 120 mg a day for spasams which seems to keep things pretty much in check (C5-6). The amount necessary has been increasing over the years but it seems to have leveled off at 120 mg/day, which is less than the maximum recommended which I believe is 180 mg/day. As far as getting sick, I can't offer any advice. Liorasal never bothered me. Having just found this news group today I have a related question. One that I'm sure has been thoroughly discussed before but having just started reading this group I don't know the answer to. That is where to buy these buggers. At ~$.75/20 mg at the corner drug store Liorasal alone costs me ~$140/month. Having just lost my insurance, see what lovely things happen when you get married, this is not something I look forward to paying. Any advice would be greatly appreciated. ken --- Ken Barner EE department University of Delaware barner@huey.udel.edu