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

Post by marieke »

Just curious, but what is your neuro considering "max" dose of neurontin?
I am just curious, as I was on a high dose, but could have gone a little higher (now take less to be able to actually focus better for school, though in slightly more pain... not a great trade off, but we'll see?
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 »

800 mg 3x day
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 »

Hmm. that's a lot, but the highest dose is actually 3600 mg a day, though at that dose you may have trouble concentrating. I had trouble at 2400 mg a day, so went down the 1600 mg. I have Lyrica too, I take 75 mg at night if my pain is bad. It works quite well.
Good luck and 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 »

You mean the neurontin could be part of the reason I can't concentrate on things? Does it affect your memory too? I swear I'll go to the fridge to get something and by the time I get there and open it I can't remember what I was looking for.
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 »

Yes, for some it can affect memory and concentration. It's not a listed side effect, but YES it CAN be the reason. I take it for the neuro pain I have from Transverse Myelitis, and have no choice really, but am considering changing to Lyrica now that our provincial health insurance covers it. It is said to have less side effects.
Good Luck, and keep the questions coming!
Marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
jennyb
Posts: 1183
Joined: Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.

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

Post by jennyb »

Hi Kissygoose
One of the reasons it may not be working as well as you need at higher doses is because Neurontin is one of those weird drugs where the bioavailability decreases the more you take. It's in the Patient Information sheet, "As dose is increased, bioavailability decreases. Bioavailability of gabapentin(neurontin)is approximately 60%, 47%, 34%, 33%, and 27% following 900, 1200, 2400, 3600, and 4800 mg/day given in 3 divided doses, respectively."
You can try to squeeze out a little more absorption by taking it with food, but you buy a whopping 14% increase, on average, in the bioavailability. Sometimes every little bit helps.
I'm not taking it myself but it's one of the drugs I get asked about more often than others. Almost everybody also reports those memory problems!
Hope that helps
Jen NZ
Joy in FL
Posts: 357
Joined: Sun Nov 04, 2001 8:36 pm
Location: Georgia

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

Post by Joy in FL »

I have this problem with a few drugs. Works great for a few months then nothing. I just assumed it was my weird body!

I am currently taking Lyrica. I started out on the 75 mg dose. There was relief but I had hoped for more. So we went up to 150 mg. More relief but still felt I could get more. I know take 300 mg daily. I am fairly satisfied with the relief I get from the 300 mg. I still have pain. However, not nearly the same as without the drug.

I had memory issues when I first started on the Lyrica. They were part of the warnings. It said they would/should go away in time. For the most part I don't notice any issues now. It took about a month before I was back to my normal forgetfulness! LOL During that month I played memory games to try and keep myself sharp. I think it helped. Or perhaps I was just looking for an excuse to play games!

Another thing I have noticed with the Lyrica. It does not seem to stay in your system very long. If I miss a dose I notice it! That was actually how I figured out the Lyrica was actually helping. I missed a full day of meds. By the next day I thought I was going to die. Very painful!
Joy in FL is now living in Georgia!
Left TBI on October 31, 1991
kissygoose

Why doesn't my meds seem to work very long

Post by kissygoose »

I'm getting so frustrated. When they put me on the Neuronton in worked for a few months real well then started not owrking so well so the doubled it. Again it worked great for a few months unless I overdid it and now all the sudden it's just not working. I'm in major pain everyday particularly in my left elbow and now shoulder. I almost can't pick up my daughter it's so bad. I don't want to have to increase my meds anymore. I mean how much further can I go up before they start telling me I can't drive on this stuff or something. And wha'ts to say it won't stop working after another few months. It was so nice those few months that it worked why can't I find something that is going to continue to work like that?

Does anyone else have this problem?
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
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Re: Why doesn't my meds seem to work very long

Post by Carolyn J »

I recommend seeing a pain management Clinic specialist.
Carolyn J
LBPI/75+++++
ASC
Posts: 113
Joined: Mon Oct 08, 2012 10:41 am
Injury Description, Date, extent, surgical intervention etc: OBPI

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

Post by ASC »

After years of pain meds, I ask my doctors to discontinue them. I use naproxen, meditation, ice, icy-hot, and accupunture.

Tony/ASC
ROBPI/Adult
"Just One More Step"
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