Re: new prescription

January 19, 2002

Sue...

I am currently on 20mg of Oxycontin twice a day up from 10mg twice a day. I can use 40 mg for "breakthrough" pain. I also take 2 mg of Zanaflex at night, down from 4mg (4 knocked me OUT for about 14 hrs, and I actually had someone call me and wanted to call 911 thinking I had a stroke)... I have been on Neurontin before for my chronic headaches, and it essentially makes me a non-functioning member of society b/c i sleep ALL the time (about 20 hrs a day) and the 4 hrs I was awake i wasnt very productive. Not to mention it wasnt very productive at reducing my pain. So far the oxycontin has been very effecitive at reducing my pain levels in my back and the burning sensation in my legs. I cant always take it twice a day b/c i work and I cant take narcotic pain meds at my job... Until I am out of work or find other non-patient care employment, I can only take it on my off days and when I get home from work. I hope it is the answer you are looking for. I had a new MRI done yesterday to look for retether and any changes in my brain MRI (I have a vascular brain tumor as well), as my neurosurgeon considers my surgery #2.

as always...

Jenn

SBO @ L2 w/TCS and diastematomyelia, surgery 4/5/00, probably retethered, MRI done 1/18/02

January 19, 2002

Sue-

I take 10 mg. of Oxy twice a day and have had success with it.

Originally, they gave me the duragesic patch....made my back feel

great but gave me a " screaming " headache. Apparently, I had a

reaction, so that is when they switched me to the Oxycontin. I also

take Naproxen 500mg. It is prescribed for 2 daily, but I use it just

mainly as needed. I believe this is more of an anti-inflammatory

med. I had already tried the neurontin and zanaflex route and didn't

have any relief what so ever.

Hope this helps. If I had a choice, I would probably try the patch

first. Let me know how you do....and I sure hope you get some

relief.

Lynn

> Hi all,

>

> I saw my neurologist this week to talk about my pain levels. I was

> sure I had to be retethered because of my symptoms, " waves of pain

> every 4-5 seconds in my lower back " , burning, throbbing pain in my

> right outer thigh, and lots of shocky, " crawlies " among many other

> assorted fun feelings. The MRI report said NO Change. It didn't

look

> retethered, but it sure feels it.

> The neurologist said he sees 4 other patients with TCS. One, a gal

> (42)had untethering surgery at age 40, but there was little change

in

> her symptoms. The neuro said she is on Oxycontin, now, and that he

> would like me to try it, or a " duragesic patch " .

> I'm taking 100mg. Neurontin, 3mg. Zanaflex, & 25mg. Elavil all at

> bedtime. I'm to start adding 10mg. Oxycontin every 12 hrs.

>

> I would really appreciate any information or experiences anyone has

> had with these meds.

>

> Thanks,

> Sue

January 19, 2002

Sue-

One more thing I forgot....not sure if this info would apply to you,

but I have a " tens " unit. This has been an absolute life saver at

times. Sometimes I experience a great deal of pain in the middle of

my back from the scoliosis, and this provides tons of relief. Didn't

know if this is something you might consider on your thigh.

Lynn

> Hi all,

>

> I saw my neurologist this week to talk about my pain levels. I was

> sure I had to be retethered because of my symptoms, " waves of pain

> every 4-5 seconds in my lower back " , burning, throbbing pain in my

> right outer thigh, and lots of shocky, " crawlies " among many other

> assorted fun feelings. The MRI report said NO Change. It didn't

look

> retethered, but it sure feels it.

> The neurologist said he sees 4 other patients with TCS. One, a gal

> (42)had untethering surgery at age 40, but there was little change

in

> her symptoms. The neuro said she is on Oxycontin, now, and that he

> would like me to try it, or a " duragesic patch " .

> I'm taking 100mg. Neurontin, 3mg. Zanaflex, & 25mg. Elavil all at

> bedtime. I'm to start adding 10mg. Oxycontin every 12 hrs.

>

> I would really appreciate any information or experiences anyone has

> had with these meds.

>

> Thanks,

> Sue

January 19, 2002

Sue,

When i was on neurontin, i started at 100mg three times a day and at my highest was on 300mg three times a day. YUCK. never again! I did let them try it again with my tethered cord, b/c they promised me it was such a wonder drug. all it did was drug me. The oxycontin doesnt make me feel drugged at all, adn coming down to 2mg of zanaflex really helped too. i dont sleep as long and can wake up much easier in the morning. at 40mg of oxycontin, i can notice a little off-coordination, but i only take that for VERY severe breakthrough pain.. so i am already in the bed with that pain anyways, so lack of coordination is not a problm. I dont think you'll notice any more sleepiness with oxycontin than anyother narcotic analgesic. I hope this works for you..

Jenn

January 19, 2002

Hi Lynn,

What is a " tens " unit?

Years ago, a physical therapist gave me a portable device that had

pads attached to it. I used gel on the pads , attached them to

certain muscles on my legs, ankles and derriere, turned on

the " juice " , and got an unpleasant " shock " . My muscles would

contract, as they were being " zapped " . The idea was to build up my

muscles that I couldn't actively contract well myself. I didn't like

the feeling. Is this the same thing that you are using? And, how

does it help with pain?

Thanks for the information,and I hope you are having a good day.

Sue

> Sue-

> One more thing I forgot....not sure if this info would apply to

you,

> but I have a " tens " unit. This has been an absolute life saver at

> times. Sometimes I experience a great deal of pain in the middle

of

> my back from the scoliosis, and this provides tons of relief.

Didn't

> know if this is something you might consider on your thigh.

>

> Lynn

>

January 19, 2002

Hi Jenn,

Thanks for the good information on meds.

When I asked my neuro what side effects could occur from the

oxycontin, " sedation " was his reply. If you wouldn't mind telling

me, how much neurontin did you take to cause the sleep-in? I take

100mg. neurontin, 3mg.Zanaflex, 20-25mg.Elavil and 50mg. macrodantin

before bedtime. In about 45 minutes to an hour, they all kick in and

I really feel un-coordinated,(more than usual!) Almost like I am

drunk. Have to lay down, cause I can't balance to walk around. I

fall to sleep right away. I'm a little concerned about taking

another med. that can knock me out during the day. I want to be doing

something besides lying in bed! I have to do alot of driving for my

mom, who can't drive, she has macular degeneration.

Adversity can make us grow in surprising and rewarding ways.

Wishing you well,

Sue

> Sue...

>

> I am currently on 20mg of Oxycontin twice a day up from 10mg twice

a day. I

> can use 40 mg for " breakthrough " pain. I also take 2 mg of

Zanaflex at

> night, down from 4mg (4 knocked me OUT for about 14 hrs, and I

actually had

> someone call me and wanted to call 911 thinking I had a stroke)...

I have

> been on Neurontin before for my chronic headaches, and it

essentially makes

> me a non-functioning member of society b/c i sleep ALL the time

(about 20 hrs

> a day) and the 4 hrs I was awake i wasnt very productive. Not to

mention it

> wasnt very productive at reducing my pain. So far the oxycontin

has been

> very effecitive at reducing my pain levels in my back and the

burning

> sensation in my legs. I cant always take it twice a day b/c i work

and I

> cant take narcotic pain meds at my job... Until I am out of work

or find

> other non-patient care employment, I can only take it on my off

days and when

> I get home from work. I hope it is the answer you are looking for.

I had a

> new MRI done yesterday to look for retether and any changes in my

brain MRI

> (I have a vascular brain tumor as well), as my neurosurgeon

considers my

> surgery #2.

>

> as always...

>

> Jenn

> SBO @ L2 w/TCS and diastematomyelia, surgery 4/5/00, probably

retethered, MRI

> done 1/18/02

January 19, 2002

Hi Sue,

Your doctor has started you off on a low dose of the oxycontin so you shouldn't worry about it making you feel tired. I haven't heard many people complain that it makes them sleepy even at very high doses. The other medications you are on are more likely to make you feel tired or not clear headed.

Elavil made me very sleepy and never really helped my pain, I was on it for a while then switched to Nortriptyline and have found that it's working much better for me.

I was taking neurontin for almost 2 years. My dose was up to 1900 mg per day but at that level I was finding that it was really starting to effect my memory, and concentration. I started with a low dose and just a 100 mg pill would make me so dizzy. it took a long time build my tolerance to the drug in order to be able to function at that level and drive and such. I slowly stopped the neurontin and started to take a different anti seizure med that doesn't have the same side effects ( doesn't cause you gain weight!!!) and I've been slowing increasing the dose of it. very slowly over the last 6 months.

So if you find you have some side effects the first week just wait a while until your body adjusts to the medicine and you may find that you won't feel any effects in a few weeks.

I tried the oxycontin and it didn't make me tired or spacey at all. but it wasn't covered by my medical plan, so I'm taking something similar 60mg every 12 hours and again it took time to get used to this level of medication. But I function without any problems now.

on 1/19/02 11:50 AM, suew234 at suew234@... wrote: