Re: Update on my daughter's appt w/local MD....

[Guest guest]

Oh no..I'm sure " frustrated " doesnt even begin to describe how you are feeling,

so sorry!

If it is any help at all I think there are some on this list that have gotten

pain relief from Topamax so maybe she will too Being an anti-epileptic, it

does take some time, not a quick fix but still, maybe it will help once it gets

in her system good.  Blessings,

Subject: Update on my daughter's appt w/local MD....

To: tetheredspinalcord

Date: Wednesday, March 23, 2011, 10:05 PM

 

Well, it wasn't fantastic, by any means. He did agree to give her Topamax, and

ordered a lumbar MRI. That's about it. No pain management what so ever!!!!

So, what is she suppose to do for her pain?? I guess he thinks if it is bad

enough, she'll head to the ER!?!

I just don't understand why it is so hard to get pediatric patients pain

management. He wouldn't refer her to one. Grrrrrr.....

This is frustrating, and we are going to run out of the supply we have leftover

very soon. Then, I don't know what in the world we will do!

Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If it

follows protocol, it will be normal. Her's always are.

Thanks for reading!

[Guest guest]

I can't imagine how upset you are. I took Topamax for about 10 years. It

helped with my neuropathy. It can take up to 2 weeks to get gradually

increase the dose and get it to a therapeutic level, but hopefully it will

begin to help her pain soon.

If it doesn't, or in the meantime, in case it doesn't, can you see about

scheduling an appointment with a physiatrist? Even if your insurance

requires a referral, your PCP should be able to write the referral. If you

find one now and schedule the new patient appointment, at least then the

appointment will be closer if the Topamax doesn't work for her pain.

Jenn

>

>

> Well, it wasn't fantastic, by any means. He did agree to give her Topamax,

> and ordered a lumbar MRI. That's about it. No pain management what so

> ever!!!!

>

> So, what is she suppose to do for her pain?? I guess he thinks if it is bad

> enough, she'll head to the ER!?!

>

> I just don't understand why it is so hard to get pediatric patients pain

> management. He wouldn't refer her to one. Grrrrrr.....

>

> This is frustrating, and we are going to run out of the supply we have

> leftover very soon. Then, I don't know what in the world we will do!

>

> Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If it

> follows protocol, it will be normal. Her's always are.

>

> Thanks for reading!

>

>

>

[Guest guest]

Yes, hang in! Lyrica didn't help my daugher, neurontin does...she adjusts

the dose with her pain level so I agree with ..perhaps the

topomax will be a great help but it takes time and their may be several dosage

adjustments along the way or experimenting with others of its class ...

hugs, randee

In a message dated 3/24/2011 12:27:58 A.M. Central Daylight Time,

livedream_believe@... writes:

Oh no..I'm sure " frustrated " doesnt even begin to describe how you are

feeling, so sorry!

If it is any help at all I think there are some on this list that have

gotten pain relief from Topamax so maybe she will too Being an

anti-epileptic, it does take some time, not a quick fix but still, maybe it

will help

once it gets in her system good. Blessings,

From: Y <_youngolewife5@..._ (mailto:youngolewife5@...) >

Subject: Update on my daughter's appt w/local MD....

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Date: Wednesday, March 23, 2011, 10:05 PM

Well, it wasn't fantastic, by any means. He did agree to give her Topamax,

and ordered a lumbar MRI. That's about it. No pain management what so

ever!!!!

So, what is she suppose to do for her pain?? I guess he thinks if it is

bad enough, she'll head to the ER!?!

I just don't understand why it is so hard to get pediatric patients pain

management. He wouldn't refer her to one. Grrrrrr.....

This is frustrating, and we are going to run out of the supply we have

leftover very soon. Then, I don't know what in the world we will do!

Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If

it follows protocol, it will be normal. Her's always are.

Thanks for reading!

[Non-text portions of this message have been removed]

[Guest guest]

Thank you both. We are sure that it will help with the pressure in her head,

but can't see it really doing much else. He also wanted her to try Ultram. Of

course, insurance was not at all happy about that.

>

> From: Y <_youngolewife5@..._ (mailto:youngolewife5@...) >

> Subject: Update on my daughter's appt w/local MD....

> To: _tetheredspinalcord _

> (mailto:tetheredspinalcord )

> Date: Wednesday, March 23, 2011, 10:05 PM

>

>

>

> Well, it wasn't fantastic, by any means. He did agree to give her Topamax,

> and ordered a lumbar MRI. That's about it. No pain management what so

> ever!!!!

>

> So, what is she suppose to do for her pain?? I guess he thinks if it is

> bad enough, she'll head to the ER!?!

>

> I just don't understand why it is so hard to get pediatric patients pain

> management. He wouldn't refer her to one. Grrrrrr.....

>

> This is frustrating, and we are going to run out of the supply we have

> leftover very soon. Then, I don't know what in the world we will do!

>

> Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If

> it follows protocol, it will be normal. Her's always are.

>

> Thanks for reading!

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

[Guest guest]

Ah! Hearing he wanted her to try Ultram, he definitely is trying to

assist with pain control!! It can be addictive the same as narcotics, I

believe, but has a different chemical makeup? Definitely a pain pill though!

Randee

In a message dated 3/26/2011 5:11:23 P.M. Central Daylight Time,

youngolewife5@... writes:

Thank you both. We are sure that it will help with the pressure in her

head, but can't see it really doing much else. He also wanted her to try

Ultram. Of course, insurance was not at all happy about that.

>

> From: Y <_youngolewife5@..._ (mailto:youngolewife5@...) >

> Subject: Update on my daughter's appt w/local MD....

> To: __tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

> (mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) )

> Date: Wednesday, March 23, 2011, 10:05 PM

>

>

>

> Well, it wasn't fantastic, by any means. He did agree to give her

Topamax,

> and ordered a lumbar MRI. That's about it. No pain management what so

> ever!!!!

>

> So, what is she suppose to do for her pain?? I guess he thinks if it is

> bad enough, she'll head to the ER!?!

>

> I just don't understand why it is so hard to get pediatric patients pain

> management. He wouldn't refer her to one. Grrrrrr.....

>

> This is frustrating, and we are going to run out of the supply we have

> leftover very soon. Then, I don't know what in the world we will do!

>

> Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If

> it follows protocol, it will be normal. Her's always are.

>

> Thanks for reading!

>

>

[Guest guest]

, dont dismiss it so quickly....Neurontin is also an anti-epileptic and

it helps ALOT of people with neuropathy. Unfortunately, I had untolerable side

effects from it but many are able to take it without problems. They (even the

manufacturer) don't really know " how " it helps...but it does. I haven't tried

Topamax but it probably works in much the same way. Lets hope so...without the

side effects   

Subject: Re: Update on my daughter's appt w/local MD....

To: tetheredspinalcord

Date: Saturday, March 26, 2011, 5:11 PM

 

Thank you both. We are sure that it will help with the pressure in her head, but

can't see it really doing much else. He also wanted her to try Ultram. Of

course, insurance was not at all happy about that.

>

> From: Y <_youngolewife5@..._ (mailto:youngolewife5@...) >

> Subject: Update on my daughter's appt w/local MD....

> To: _tetheredspinalcord _

> (mailto:tetheredspinalcord )

> Date: Wednesday, March 23, 2011, 10:05 PM

>

>

>

> Well, it wasn't fantastic, by any means. He did agree to give her Topamax,

> and ordered a lumbar MRI. That's about it. No pain management what so

> ever!!!!

>

> So, what is she suppose to do for her pain?? I guess he thinks if it is

> bad enough, she'll head to the ER!?!

>

> I just don't understand why it is so hard to get pediatric patients pain

> management. He wouldn't refer her to one. Grrrrrr.....

>

> This is frustrating, and we are going to run out of the supply we have

> leftover very soon. Then, I don't know what in the world we will do!

>

> Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If

> it follows protocol, it will be normal. Her's always are.

>

> Thanks for reading!

>

>

[Guest guest]

why wouldn't insurance like ultram? There is a less expensive generic.

Jenn

Sent from my iPhone

Thank you both. We are sure that it will help with the pressure in her head,

but can't see it really doing much else. He also wanted her to try Ultram.

Of course, insurance was not at all happy about that.

>

[Guest guest]

Bobin said the following on 3/26/2011 8:40 PM:

> why wouldn't insurance like ultram? There is a less expensive generic.

>

Yes same as Tramadol. I've had both, do not notice any difference. Both

are effective for minor muscle/body/joint aches & pains.

Someone mentioned about addiction; it is not known to be addictive. It

is what they give people for pain that are addicted to vicoden, codeine,

heroin, etc.

Rick

[Guest guest]

I have a friend who takes this for Fibromyalgia. It changed his life, literally.

Helped him so much and gave him so much relief that he offerred me some to see

if it would help me. As Rick said, it helped with bone, muscle, joint pain but

didnt touch the nerve pain. It may not be addictive but it made me feel really

hyped, irritable, anxious etc about an hour before the next dose was due. BUT,

for some reason my body just doesnt do well with meds so that probably isnt an

issue for most. 

Subject: Re: Update on my daughter's appt w/local MD....

To: tetheredspinalcord

Date: Sunday, March 27, 2011, 2:18 AM

 

Bobin said the following on 3/26/2011 8:40 PM:

> why wouldn't insurance like ultram? There is a less expensive generic.

>

Yes same as Tramadol. I've had both, do not notice any difference. Both

are effective for minor muscle/body/joint aches & pains.

Someone mentioned about addiction; it is not known to be addictive. It

is what they give people for pain that are addicted to vicoden, codeine,

heroin, etc.

Rick

[Guest guest]

Tramadol/Ultram has the same withdrawal symptoms as codiene and/or the

SSRIs...However, one needs to take what one needs to take for the treatment of

pain!! I suspect the physician in this case may be prescribing the Ultram

until the anti-seizure meds have had a chance to build up. It was

initially thought to not have a withdrawal phenomenon and was far more widely

prescribed until people tried to go off. Again, having worked in a pain clinic

for some years, it was believed there that if narcotics (in the case of

Ultram a manmade narcotic like drug similar to both codeine and the SSRI's

so get happy and pain free at the same time) are needed, they are needed.

The philosophies vary enormously as we all know regarding narcotics and pain

control. Randee PS It may be used with those who are addicted to

narcotics because it effects different brain chemistries but will still have a

potentially serious withdrawal phenomenon if used for a prolonged period of

time.

In a message dated 3/27/2011 9:12:54 A.M. Central Daylight Time,

livedream_believe@... writes:

I have a friend who takes this for Fibromyalgia. It changed his life,

literally. Helped him so much and gave him so much relief that he offerred me

some to see if it would help me. As Rick said, it helped with bone, muscle,

joint pain but didnt touch the nerve pain. It may not be addictive but it

made me feel really hyped, irritable, anxious etc about an hour before the

next dose was due. BUT, for some reason my body just doesnt do well with meds

so that probably isnt an issue for most.

From: Rick <_rick_lists@..._ (mailto:rick_lists@...) >

Subject: Re: Update on my daughter's appt w/local MD....

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Date: Sunday, March 27, 2011, 2:18 AM

Bobin said the following on 3/26/2011 8:40 PM:

> why wouldn't insurance like ultram? There is a less expensive generic.

>

Yes same as Tramadol. I've had both, do not notice any difference. Both

are effective for minor muscle/body/joint aches & pains.

Someone mentioned about addiction; it is not known to be addictive. It

is what they give people for pain that are addicted to vicoden, codeine,

heroin, etc.

Rick

[Non-text portions of this message have been removed]

[Guest guest]

I agree Randee, people need to try everything they can to find pain relief.

Everyones body chemistry is different and different things work for different

people. Living in debilitating pain is no way to live. 

From: Rick <_rick_lists@..._ (mailto:rick_lists@...) >

Subject: Re: Update on my daughter's appt w/local MD....

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Date: Sunday, March 27, 2011, 2:18 AM

Bobin said the following on 3/26/2011 8:40 PM:

> why wouldn't insurance like ultram? There is a less expensive generic.

>

Yes same as Tramadol. I've had both, do not notice any difference. Both

are effective for minor muscle/body/joint aches & pains.

Someone mentioned about addiction; it is not known to be addictive. It

is what they give people for pain that are addicted to vicoden, codeine,

heroin, etc.

Rick

[Guest guest]

Topamax caused my total loss of bowel control. It's a rare side effect but my

motto is 'if it's gonna happen, it's gonna happen to me'. lol! As for pain, it

didn't help all that much. I'm on Tramadol right now, and it helps to some

degree. Instead of the 'pins and needles' feeling, it's more...numb. Kind of

like when you sit on your foot/lean on your arm or hand for too long. I see the

pain Dr. on Wednesday and I'm not sure I'm staying with it. I haven't tried

Neurontin because it zoned me out when I took it in 1994. I took the generic

(can't think of the name at the moment) and my pain increased so I stopped.

Jodi

>Neurontin is also an anti-epileptic and it helps ALOT of people with

neuropathy.

>Unfortunately, I had untolerable side effects from it but many are able to take

>it without problems. They (even the manufacturer) don't really know " how " it

>helps...but it does. I haven't tried Topamax but it probably works in much the

>same way. Lets hope so...without the side effects

[Guest guest]

Jodi,

None of the pain meds are going to get rid of all of your pain - and that is

not the goal of pain management, either. The goal is to get your pain down

to a manageable level. If the Ultram/tramadol gets rid of the painful

pin/needles feeling and leaves you numb (but w/o pain), then that sounds

like a pretty good outcome to me. I would love to get my neuropathy under

control to that point. My legs feel like they are burning even with my pain

meds, but that is better than feeling like they are on fire w/o them.

Jenn

>

>

> I'm on Tramadol right now, and it helps to some

> degree. Instead of the 'pins and needles' feeling, it's more...numb. Kind

> of

> like when you sit on your foot/lean on your arm or hand for too long. I see

> the

> pain Dr. on Wednesday and I'm not sure I'm staying with it.

>

> Jodi

>

>

[Guest guest]

I think we need to be careful in how we discuss narcotics used for pain

management on the board. I also want to reiterate what may work for one person,

may not for another. I worry at how quickly the link to addiction has been

reached in correlation to pain medication, especially that which is narcotic.

May we remember, new members are joining more every day, who have questions,

concerns, worries and fears. I do not want to discourage others from various

routes and pain management treatment options, just because some of them may

involve narcotics.

--

TSC Group Moderator

> >

> > From: Y <_youngolewife5@_ (mailto:youngolewife5@) >

> > Subject: Update on my daughter's appt w/local MD....

> > To: __tetheredspinalcord _

> (mailto:_tetheredspinalcord ) _

> > (mailto:_tetheredspinalcord _

> (mailto:tetheredspinalcord ) )

> > Date: Wednesday, March 23, 2011, 10:05 PM

> >

> >

> >

> > Well, it wasn't fantastic, by any means. He did agree to give her

> Topamax,

> > and ordered a lumbar MRI. That's about it. No pain management what so

> > ever!!!!

> >

> > So, what is she suppose to do for her pain?? I guess he thinks if it is

> > bad enough, she'll head to the ER!?!

> >

> > I just don't understand why it is so hard to get pediatric patients pain

> > management. He wouldn't refer her to one. Grrrrrr.....

> >

> > This is frustrating, and we are going to run out of the supply we have

> > leftover very soon. Then, I don't know what in the world we will do!

> >

> > Sorry for the vent/rant. I guess we'll see what the lumbar MRI shows. If

> > it follows protocol, it will be normal. Her's always are.

> >

> > Thanks for reading!

> >

> >

[Guest guest]

There is a difference between " addiction " and " dependence. " People who take

narcotics for a long time are not *addicted *to narcotics; rather they are

physically *dependent *on them (meaning if they were to quit suddenly, they

would experience withdrawal symptoms. If someone is *addicted* to a drug

(could be narcotics, stimulants such as Adderall or Ritalin, or illegal

drugs), they are crave the drug, and generally more of the drug. When

someone takes properly prescribed narcotics (or other controlled substances)

for pain management (or to medically manage another condition), they do not

crave the drug. If I miss a dose of mine (bc I slept through a dose or was

out and forgot to bring my meds with me, etc) I don't crave it. Sometimes I

notice I missed the dose because either my pain is uncontrolled or I start

to experience withdrawal symptoms (sweating, shaking, anxiety - similar

feeling to low blood sugar). If someone is *addicted*, they will crave the

drug, even if they have taken a prescribed dose.

Jenn

On Sun, Mar 27, 2011 at 10:05 PM, hollygolightly1916

wrote:

>

>

> I think we need to be careful in how we discuss narcotics used for pain

> management on the board. I also want to reiterate what may work for one

> person, may not for another. I worry at how quickly the link to addiction

> has been reached in correlation to pain medication, especially that which is

> narcotic. May we remember, new members are joining more every day, who have

> questions, concerns, worries and fears. I do not want to discourage others

> from various routes and pain management treatment options, just because some

> of them may involve narcotics.

>

> --

> TSC Group Moderator

>

[Guest guest]

Forgot to mention - this doesn't mean to say that people who have been

prescribed controlled substances can't be addicted to it - they can. They

will start taking more than what they are prescribed, visit multiple MDs to

get more prescriptions for the Rx (to feed their habit), etc. My point was

that someone taking a controlled substance Rx that was prescribed by a MD

and taking it as it is prescribed, is not an addict.

Jenn

> There is a difference between " addiction " and " dependence. " People who

> take narcotics for a long time are not *addicted *to narcotics; rather

> they are physically *dependent *on them (meaning if they were to quit

> suddenly, they would experience withdrawal symptoms. If someone is *

> addicted* to a drug (could be narcotics, stimulants such as Adderall or

> Ritalin, or illegal drugs), they are crave the drug, and generally more of

> the drug. When someone takes properly prescribed narcotics (or other

> controlled substances) for pain management (or to medically manage another

> condition), they do not crave the drug. If I miss a dose of mine (bc I slept

> through a dose or was out and forgot to bring my meds with me, etc) I don't

> crave it. Sometimes I notice I missed the dose because either my pain is

> uncontrolled or I start to experience withdrawal symptoms (sweating,

> shaking, anxiety - similar feeling to low blood sugar). If someone is *

> addicted*, they will crave the drug, even if they have taken a prescribed

> dose.

>

> Jenn

>

>

[Guest guest]

Jenn,

I forgot to mention that on the 1-10 pain scale, the numb feeling is a 7-8. The

same level as the pins and needles feeling. If it was a 2-3, I'd be a happy

camper. The Lyrica brought my pain down to a 1-2, but I lost total bladder

control with that med. Also a rare side effect.

>None of the pain meds are going to get rid of all of your pain - and that is

not

>the goal of pain management, either. The goal is to get your pain down to a

>manageable level. If the Ultram/tramadol gets rid of the painful pin/needles

>feeling and leaves you numb (but w/o pain), then that sounds like a pretty good

>outcome to me. I would love to get my neuropathy under control to that point.

My

>legs feel like they are burning even with my pain meds, but that is better than

>feeling like they are on fire w/o them.

Randee,

Gabapentin is the generic, correct? I took that and my pain went UP. The Dr.

said there's something in that range of meds that I'm allergic to or just can't

tolerate. The fact that my body reacted to the generic (and the brand name in

1994) that way doesn't bode well for the brand name now, regardless of dosage,

imo. But I can ask.

>If you ever want to try neurontin etc. again, you might ask your MD to give you

>a tiny amount for three weeks and increase it very very gradually to a

>therapeutic dose. The dose varies enormously and he/she may have started you

too

>high. Randee

Regarding medical marijuana: my sister (a nurse) joked about asking the Dr.

about it. So I did. He said " it wouldn't help the type of nerve pain you have

and the secondary effects (smoking) would only cause other medical problems " . He

didn't say it but lung cancer, perhaps?

Jodi