Why doesn't my meds seem to work very long

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Why doesn't my meds seem to work very long

Post by Kath » Sun Oct 08, 2006 2:19 pm

Kissy
The only med I ever took was Vioxx. It was a wonder drug for me. After three days I had side effects and swelled up.
I did not know how much pain I was dealing with until I took this drug.
I was amazed and finally realized everyone did not have all the aches and pains we have.
I guess because I was always in pain I did not know the difference.
I hated going off it and it actually took me weeks to adjust to the pain again.
I admit I am more aware of the pain since that time.
I hope you find something soon.
I have a problem with drug sensitivity, every time I take something for a short time I react with some of the rare symptoms... so I don't take anything... ugh.

Kath (adult/robpi)
Kath robpi/adult

Kathleen Mallozzi

Beckyerin
Posts: 104
Joined: Wed Aug 17, 2005 8:06 pm

Re: Why doesn't my meds seem to work very long

Post by Beckyerin » Sun Oct 08, 2006 3:22 pm

I recently have begun using ice on my painful BPI shoulder at the end of every day and I love it. It never would have dawned on me that something so simple could be so affective until my PT suggested it. It helps to numb the pain and it reduces muscle inflamation and its CHEAP! Also she gave me the idea of doing my own self massage with a tennis ball. I sit or stand up against a wall and roll the ball around my shoulder until I find a sore spot and then press into it with the ball. Again, I love this too, it really makes my shoulder feel pretty good. Its amazing how I was looking for some medical procedure to make me fell better when the most affective pain relief I gotten yet I can do to myself.
Becky

User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Why doesn't my meds seem to work very long

Post by marieke » Sun Oct 08, 2006 6:52 pm

Ask your doctor about Lyrica (pregabalin). It does what Neurontin does at a lower dose and for many people works better than Neurontin.
marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com

Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Why doesn't my meds seem to work very long

Post by Carolyn J » Wed Oct 11, 2006 11:33 am

Becky,
Thanks a Million for your "ICE TIP"!!! It works good for my shoulder tightness & pain.

Christina, I hope you get relief soon!

HUGS all around!,
Carolyn J
Carolyn J
Adult LOBPI

Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Why doesn't my meds seem to work very long

Post by Kath » Wed Oct 11, 2006 3:35 pm

I am amazed that anyone could use ice on their arm or shoulder.
When the PT tried to use ice on my shoulder I was in agony!
I knew that side of my body is always cold from head to toe but did not expect the horrible pain I experienced from using ice.

I use Mineral Ice on my arm, neck and shoulder when I am in pain and need a distraction.
The Mineral Ice seems to warm up in a way that makes me feel comfortable.

Kath (robpi/adult)
Kath robpi/adult

Kathleen Mallozzi

Beckyerin
Posts: 104
Joined: Wed Aug 17, 2005 8:06 pm

Re: Why doesn't my meds seem to work very long

Post by Beckyerin » Thu Oct 12, 2006 3:49 pm

Kath,
fortunately I do not have much hypersensitivity in my ROBPI side save for a little bit in my bicep. Even then I can still put ice or heat on that region. I guess I forget sometimes how differently we are all affected by this injury.
Becky

Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Why doesn't my meds seem to work very long

Post by Kath » Thu Oct 12, 2006 8:11 pm

Becky
I can't really feel heat very well.
It's amazing how different the same injury affects us.
I have feeling in some spots on my arm/hand and none in other places.
Cold just sends me up the wall even when I type my arm and hand are freezing.

Kath ( adult/robpi)
Kath robpi/adult

Kathleen Mallozzi

kissygoose

Re: Why doesn't my meds seem to work very long

Post by kissygoose » Mon Oct 16, 2006 3:21 pm

Thanks for the suggestions. I don't think ice is a good idea for me because like Kath I'm hypersensitive on that side and ice hurts me. I'll have to try the ball though.

I called my neurologist and they are upping my meds to the max dose in hopes that it will help. I don't know what else to do. So we'll see what happens.

User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Why doesn't my meds seem to work very long

Post by marieke » Mon Oct 16, 2006 6:45 pm

If the max dose doesn't work for long ask about Lyrica.
Let us know what happens.
Marieke :)
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com

kissygoose

Re: Why doesn't my meds seem to work very long

Post by kissygoose » Mon Oct 16, 2006 7:44 pm

Actually my pcp has mentioned it and when I see him next I'm going to tell him what's going on. He doesn't like my neurologist and I have a feeling that with this latest development he's going to be trying to either find me a new one or take over my pain management. If he does he'll most likely put me on it. I'm just so tired of every 3 months needing more meds because it's just like they stop working.

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