Re: MITO:Neurontin?

[Guest guest]

,

I honestly do not know if it is a narcotic or not. We are so desperate for pain med. I don't guess it really matters. There is not much else out there besides Tylenol or Motrin unless it is a narcotic. Someone sent me the RX page of it. I have it somewhere. I do not remember reading that it is a narcotic. It does have a lot of side effects it mentions. but so does a lot of other meds if you read on them.

Look it up. I will too. See what you can find and so will I . We can share the info.

Thanks,

Krystena

MITO:Neurontin?

Not sure I spelled it right, sorry guys!

Hope you all are enjoying your weekend.

Just a question:

someone I think on this list mentioned giving Neurontin

to their kids for pain? If my mind is not totally failing me.

My Dr. does not want to put on any narcotics for pain, but she really needs something. Is this neurontin a narcodic? Well if so thats out. Anyone have any good suggestions for a swell pain med?

We need something to take the edge off at night so she can rest but Tylenol just does not cut it.....HELP!

Thanks bunches!

HorsleyPlease contact mito-owner with any problems or questions.

[Guest guest]

,

I honestly do not know if it is a narcotic or not. We are so desperate for pain med. I don't guess it really matters. There is not much else out there besides Tylenol or Motrin unless it is a narcotic. Someone sent me the RX page of it. I have it somewhere. I do not remember reading that it is a narcotic. It does have a lot of side effects it mentions. but so does a lot of other meds if you read on them.

Look it up. I will too. See what you can find and so will I . We can share the info.

Thanks,

Krystena

MITO:Neurontin?

Not sure I spelled it right, sorry guys!

Hope you all are enjoying your weekend.

Just a question:

someone I think on this list mentioned giving Neurontin

to their kids for pain? If my mind is not totally failing me.

My Dr. does not want to put on any narcotics for pain, but she really needs something. Is this neurontin a narcodic? Well if so thats out. Anyone have any good suggestions for a swell pain med?

We need something to take the edge off at night so she can rest but Tylenol just does not cut it.....HELP!

Thanks bunches!

HorsleyPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi,

My son is on Neurontin with two other seizure meds to contro his seizures, but she said it would also help his migraines. It did help his migraines alittle, but hasn''t helped any other pain. His internist tried him on Ultram for pain, it's a narcotic, but not strong, his Neurologist wants him to take Oxicontin ???? That, I'm afraid to use. I'll be seeing his Mito Doc May 3rd I will discuss pain med options with him. Each patient is so different I would ask a Mito doc, but I don't think Neurontin is a Narcotic,but you could ask a pharmacist.

Robin

[Guest guest]

Neurontin is NOT a narcotic!!!!

I myself have been on it and my sister who has mito has been on it for years.

It is labeled as an anti-seizure med, but there are dozens of uses for it "off-label." I know it is used for neuropathy, as well as an extreemely mild sedative for sleep (this is what I had used it for). It is metabolized quite quickly and doesn't stay in your system for long.

Carol (mom to Neal, 8 and 13 with Mito PDD)

[Guest guest]

Neurontin is NOT a narcotic!!!!

I myself have been on it and my sister who has mito has been on it for years.

It is labeled as an anti-seizure med, but there are dozens of uses for it "off-label." I know it is used for neuropathy, as well as an extreemely mild sedative for sleep (this is what I had used it for). It is metabolized quite quickly and doesn't stay in your system for long.

Carol (mom to Neal, 8 and 13 with Mito PDD)

[Guest guest]

Hi,

I don't post very often, but my kids suffer(ed) from severe pain in their

backs, legs, and just about everywhere else. They had migraines as well as

extremely sore joints. My daughter has severe stomach pain. The pain is the

biggest problem for my kids, it kept my son out of school for 3 years and my

daughter out of school for 1 year. They would scream for hours on end with

back spasms and pain. We tried everything - Neurontin, Amytriptyline,

Tylenol 3, Vallium, Klonopin, but they could not get any pain relief.

Today, my son has very little pain and is school full time. My daughter is

in school about 80% of the time. What made the difference? We went to a

pediatric pain clinic. They worked with our Mito specialists and tried

several medications until they found a combination that could control the

pain (at least make the pain tolerable). We also see a fantastic

Psychologist (only about once every six months) who specializes in treating

patients with pain and chronic illness. Other things we did were Biofeedback

and Aqua Therapy. Once my kids started to improve, they started a " mito "

cocktail. The pain has lessened and they have cut back on these medications.

If you want to know more, feel free to email me privately.

On the subject of Neurontin, I recently told one of our doctors that we tried

it with my son for pain and it didn't work at all, just had a lot of side

affects. His response was that while Neurontin does work great for pain in adu

lts, it has not worked as well in children.

As far as sleeping, my kids were always in severe pain (back and legs) and

not able to sleep at night. After trying everything, including sleeping on

the couch, we discovered Select Comfort mattresses (the one that has sleep

numbers). They are able to let out air until they are comfortable. They let

out almost all of the air so they sleep like they are in a hammock! Although

they sell the mattress with a foundation, you only need to buy the mattress,

it fits on your existing boxspring. We know this is working because they

can't sleep in any other bed without back pain and sleepless nights.

I hope this information is helpful!

Kathi

Mike, 14 and 10, Mitochondrial Myopathy

[Guest guest]

Hi,

I don't post very often, but my kids suffer(ed) from severe pain in their

backs, legs, and just about everywhere else. They had migraines as well as

extremely sore joints. My daughter has severe stomach pain. The pain is the

biggest problem for my kids, it kept my son out of school for 3 years and my

daughter out of school for 1 year. They would scream for hours on end with

back spasms and pain. We tried everything - Neurontin, Amytriptyline,

Tylenol 3, Vallium, Klonopin, but they could not get any pain relief.

Today, my son has very little pain and is school full time. My daughter is

in school about 80% of the time. What made the difference? We went to a

pediatric pain clinic. They worked with our Mito specialists and tried

several medications until they found a combination that could control the

pain (at least make the pain tolerable). We also see a fantastic

Psychologist (only about once every six months) who specializes in treating

patients with pain and chronic illness. Other things we did were Biofeedback

and Aqua Therapy. Once my kids started to improve, they started a " mito "

cocktail. The pain has lessened and they have cut back on these medications.

If you want to know more, feel free to email me privately.

On the subject of Neurontin, I recently told one of our doctors that we tried

it with my son for pain and it didn't work at all, just had a lot of side

affects. His response was that while Neurontin does work great for pain in adu

lts, it has not worked as well in children.

As far as sleeping, my kids were always in severe pain (back and legs) and

not able to sleep at night. After trying everything, including sleeping on

the couch, we discovered Select Comfort mattresses (the one that has sleep

numbers). They are able to let out air until they are comfortable. They let

out almost all of the air so they sleep like they are in a hammock! Although

they sell the mattress with a foundation, you only need to buy the mattress,

it fits on your existing boxspring. We know this is working because they

can't sleep in any other bed without back pain and sleepless nights.

I hope this information is helpful!

Kathi

Mike, 14 and 10, Mitochondrial Myopathy

[Guest guest]

Neurontin does not work well for pain unless it is prescribed in adequate

amounts. Unfortunately there is little data about how high it can be Rxed

with kids and physicians are reluctant to push the dose up too much.

Our children take what are considered to be very high doses. They have been

on these doses for years without any ill effects. It is mainly metabolized

by the kidneys rather than the liver which makes it safer than most seizure

meds. We follow kidney function via BUN and creatinine and I would recommend

that to anyone taking Neurontin.

We have based our dosing on what is used for the HIV population. My kids

don't have HIV but children and adults with HIV often have very debilitating

and painful neuropathy. HIV docs learned a while ago that Neurontin works

great if given in high amounts for pain.

Of course it does not work for everyone but if it is not helping I might

first question whether the dose is adequate before giving up on it.

Anne

----- Original Message -----

His response was that while Neurontin does work great for pain in adu

> lts, it has not worked as well in children.

>

[Guest guest]

Carol,

Good to hear from you. I just had a metabolic work up last Friday! I have always been sick. Failure to thrive as a baby. Couldn't even suck a bottle! As time went on, the better I go. Still not 100%. .

I have many syptoms.Just to name a few..............Near fainting if I don't eat on time. Blood sugar will hit 50 easy. Been as low as 43.Very thin even though I eat SOOOOOOO much!I can eat as much as my husband!Tachycardia with high blood pressureclumsiness/uncoordinated (comes in spells)vision changes over nightheadaches ( not as often as they used to be)dizzyWhen I had my bad attack in 2000, I had many more symptoms

such as:

a feeling of cold water pouring through my head.Saw spots and my eyes would fixate on things.Eyes would jerk and skip lines when I read.I dropped every dish I had!Very frequent urination (was put on detrol to slow down kidneys)Lost down to 98 lbs from 112.sharp shooting pains down my back and legleft leg painI could not sleep! My mind wouldn's shut downEsophageal spasms and acid reflux (used GI cocktails for pain relief)Broke out in severe sweats with a fluttering heart beatEKG said I have a right bundle blockage in heart (said it wasn't serious)????TiredenssI finally recovered after a few months.It was a very long journey.After not coming up with much they just said that I was having anxietyattacks!!!!!!!

I dont' know about my parents. My mother has something... depression and severe sweating, etc.I am only 27 and there is a huge spot of demylenation on the right side ofmy brain. Definitely abnormal!They considered everything but a metabolic disease.Now that my son has a metabolic disease they are rethinking it.

My neuro. suddenly knew about mito and metabolic diseases.. He said they were just so rare. I think that is the BIG mistake some dr.'s are making. Assuming because it is rare, there is no need to check for it.

I guess it took seeing it put on paper by a Dr. from MAYO, made him listen. Caden's dr. at Mayo suggested the labs and put them on paper for my neuro.

I am like you, I pray every day that I can maintain my health. My kids need me. My heart really scares me because of the palpatations I get. My blood pressure is crazy too. It will be high one minute and low the next. (80/40)! Ironically, I feel the same symptoms with low bp as I do when my bp gets high.....

My son still doesn't have a final diagnosis. His past labs have suggested GAII but his geneticis at Mayo highly suspects Mito. cytopathy.

I had 10 tubes of blood drawn Friday. and forgot one of the MAIN tests. My total carnitine. I just called my neuro. to let him know that we forgot to get it. I dred getting stuck again but hey, that is a crucial test. My son is low in carnitine (secondary to his " primary diagosis"..

Well, I just wanted to let you know that I know where you are coming from. I am 27 and feel 57 sometimes.

Also, my thyroid acts up. It was high about 3mths ago. Now it is normal. They said it came come and go like that. I have terrible symptoms when it is over active.

Probably no way around getting checked without making a record.

Take care,

Krystena

Re: MITO:Neurontin?

Neurontin is NOT a narcotic!!!!

I myself have been on it and my sister who has mito has been on it for years.

It is labeled as an anti-seizure med, but there are dozens of uses for it "off-label." I know it is used for neuropathy, as well as an extreemely mild sedative for sleep (this is what I had used it for). It is metabolized quite quickly and doesn't stay in your system for long.

Carol (mom to Neal, 8 and 13 with Mito PDD)Please contact mito-owner with any problems or questions.

[Guest guest]

Carol,

Good to hear from you. I just had a metabolic work up last Friday! I have always been sick. Failure to thrive as a baby. Couldn't even suck a bottle! As time went on, the better I go. Still not 100%. .

I have many syptoms.Just to name a few..............Near fainting if I don't eat on time. Blood sugar will hit 50 easy. Been as low as 43.Very thin even though I eat SOOOOOOO much!I can eat as much as my husband!Tachycardia with high blood pressureclumsiness/uncoordinated (comes in spells)vision changes over nightheadaches ( not as often as they used to be)dizzyWhen I had my bad attack in 2000, I had many more symptoms

such as:

a feeling of cold water pouring through my head.Saw spots and my eyes would fixate on things.Eyes would jerk and skip lines when I read.I dropped every dish I had!Very frequent urination (was put on detrol to slow down kidneys)Lost down to 98 lbs from 112.sharp shooting pains down my back and legleft leg painI could not sleep! My mind wouldn's shut downEsophageal spasms and acid reflux (used GI cocktails for pain relief)Broke out in severe sweats with a fluttering heart beatEKG said I have a right bundle blockage in heart (said it wasn't serious)????TiredenssI finally recovered after a few months.It was a very long journey.After not coming up with much they just said that I was having anxietyattacks!!!!!!!

I dont' know about my parents. My mother has something... depression and severe sweating, etc.I am only 27 and there is a huge spot of demylenation on the right side ofmy brain. Definitely abnormal!They considered everything but a metabolic disease.Now that my son has a metabolic disease they are rethinking it.

My neuro. suddenly knew about mito and metabolic diseases.. He said they were just so rare. I think that is the BIG mistake some dr.'s are making. Assuming because it is rare, there is no need to check for it.

I guess it took seeing it put on paper by a Dr. from MAYO, made him listen. Caden's dr. at Mayo suggested the labs and put them on paper for my neuro.

I am like you, I pray every day that I can maintain my health. My kids need me. My heart really scares me because of the palpatations I get. My blood pressure is crazy too. It will be high one minute and low the next. (80/40)! Ironically, I feel the same symptoms with low bp as I do when my bp gets high.....

My son still doesn't have a final diagnosis. His past labs have suggested GAII but his geneticis at Mayo highly suspects Mito. cytopathy.

I had 10 tubes of blood drawn Friday. and forgot one of the MAIN tests. My total carnitine. I just called my neuro. to let him know that we forgot to get it. I dred getting stuck again but hey, that is a crucial test. My son is low in carnitine (secondary to his " primary diagosis"..

Well, I just wanted to let you know that I know where you are coming from. I am 27 and feel 57 sometimes.

Also, my thyroid acts up. It was high about 3mths ago. Now it is normal. They said it came come and go like that. I have terrible symptoms when it is over active.

Probably no way around getting checked without making a record.

Take care,

Krystena

Re: MITO:Neurontin?

Neurontin is NOT a narcotic!!!!

I myself have been on it and my sister who has mito has been on it for years.

It is labeled as an anti-seizure med, but there are dozens of uses for it "off-label." I know it is used for neuropathy, as well as an extreemely mild sedative for sleep (this is what I had used it for). It is metabolized quite quickly and doesn't stay in your system for long.

Carol (mom to Neal, 8 and 13 with Mito PDD)Please contact mito-owner with any problems or questions.

[Guest guest]

Neurontin is an anticonvulsant. It is used commonly as a painreliever for

neuropathic pain. Meaning pain that is " burning, on the skin, hurts to touch

the skin, type pain. Neuropathic pain is caused by chronic unrelieved pain.

Like after you have shingles and the skin still hurts for years afterwards.

It could also be used to potentiate a narcotic. Meaning that you could use

less of a narcotic because you have added the neurontin. Antidepressants

work great with a narcotic or with a anticonvulsant to relieve pain. I am a

Pain Resource Nurse at Great River Medical Center. Please let me know more

about the pain and maybe I can help.

Janelle McGuire

Mom to 6 with mito and 8 with ADHD

[Guest guest]

Janelle,

Thanks for the info on the Neurontin. Your discription has pegged. she has the kind of severe pain you discribed.

she just cries and cant be touched and sometimnes cant lay down or even sit because it hurts so bad.

Her mito Dr. did not want to put her on a narcotic, so when someone responded on this list about this Neurontin I sent the info to her Dr. She said she was considering this after some research. So looks like we will be trying it soon. The Dr. said she will be on it full-time and not just when in severe pain. I pray it works.

If you know of some other things that are good and not narcotics let me know just in case this does not work.

How long should it take to see some relief....any idea?

Many thanks,

Horsley

****By the way do I know you from E-bay?

[Guest guest]

The Neurontin usually works pretty fast. A typical dose for an adult to

start with is 300mg three times a day. I don't have my facts right in front

of me. But, I believe you can go up to 3000mg a day safely. Sometimes the

dose must be titrated up to maximum affect. An antidepressant along with

Neurontin would help pain also. Like Amitriptyline. I would suggest that

combination. Also, if there is a specific area of pain there are Lidoderm

patches. You may want to investigate those.

Good luck.

I think you know me because you sent me your daughters photo for my mito

display.

Janelle

[Guest guest]

, Neurontin is not a narcotic. I tried it for my son Noah to help him sleep, but for him it did not work. Now we are trying Remeron which is actually an anti-psychotic but has a lot of crossover effects, in other words they are finding many more uses for it besides psychosis!! A few other options: chlorol hydrate, Rifsperadol, or Haldol. My nueurologist has been great with trying whatever it takes to calm Noah down enough to sleep, which is a nearly impossible task. Good luck. , mom to Noah, 2 1/2, suspected mito.

[Guest guest]

Hi All--

I have to credit neurontin with giving me at least part of my life back. The positives are-according to the doc- are that it is very clean, few interactions, not addictive, and a wide variation of doseages with very few side effects. When all is well I can function on 1200/mg daily. When things are not so good I can go as high as 3600/mg. There is less pain, better sleeping and I can adjust dosages up without a visit.

Deb

Re: MITO:Neurontin?

Neurontin is NOT a narcotic!!!!

I myself have been on it and my sister who has mito has been on it for years.

It is labeled as an anti-seizure med, but there are dozens of uses for it "off-label." I know it is used for neuropathy, as well as an extreemely mild sedative for sleep (this is what I had used it for). It is metabolized quite quickly and doesn't stay in your system for long.

Carol (mom to Neal, 8 and 13 with Mito PDD)Please contact mito-owner with any problems or questions.