Neurontin...What is your opinion...anyone?

[Me967]

I was reading a post by platelet gal in concern with Neurontin mentioned.  The link is:  

http://chronicfatigue.about.com/b/2008/07/13/lyrica-neurontin-label-may-not-carry-fdas-highest-warning-of-suicide-risk.htm

My husband has CMT (Charcot-Marie-Tooth) and was given this Rx to take for pain.  Being that he get's depressed easy, I'm worried.  He is always in a lot of pain though and has to take something.  His doctor does not believe in pain pills and he is always in a ton of pain due to the dropping arches and curling of his feet.  

Has anyone taken this?
Did it help with pain from polyneuropathy or in general?
Did it cause depression or suicidal thoughts?

Would love to hear your experience or if you are educated about this drug at all.
Also if you have CMT, any advise on pain control.  Mainly feet and legs.
Thank you in advance......Amy.

[Me967]

Hi.  I feel for you with your daily pain.  I don't understand alot about the different types yet; but, I'm learning.  From what I understand so far he has the type of CMT related to demyelination poly neuropathy.  He was diagnosed with CMT back in the Navy/Marines when he was only 17.

From what I found out today the insurance will NOT cover the Foot Orthotics inserts for his shoes....they say it is due to "state rules" unless.....LOL  he's an alcoholic.  I think it is a lot of bull though so I'm trying to find out.  I also had to fight them for a pap test one year (that I knew was covered under the state rules in Pa.) and won.  Will have to figure it out by Monday I guess.  

As for the AFO brace I think the Muscular Dystrophy Association is going to help with the cost of that once he is registered.  The fact that neither doctor wants him on pain med's (after nagging my husband for 3 years to go to a doctor in the first place) is driving me nuts!  It seems like we just wasted over a grand (that we did not have) on nothing and he is still in pain!  Once he gets older and can't do anything physical then they will let him be a pain free old fart.  Yay.  In the mean while I guess he just has to suffer daily.  Grrrrr.

Ooh  they also said they would cover my diabetes supplies and so forth if I am an alcoholic; otherwise Not.  What's the deal!!!!  I guess if your straight and a hard worker trying to make it.....you get nothing!  If your on drugs or addicted to alcohol you have it made.  NOW WHAT'S WRONG WITH THE SYSTEM!  Sorry.  I'll stop.

Sorry for the vent.  Just frustrated I guess and maybe should not let it out here.  So sorry for the frustration.

Thank you for everything.   Please take care of yourself.  Amy.

[VaBreeze]

Yes...that will make it worse indeed.  Neuropathy is very difficult to treat.  I have had it for 3 yrs. now and it's daily pain...the weather doesn't help either.  Mine is due to the deep peroneal nerve being dead and reflex sympathetic dystrophy (nerve tingling) from an injury.  I truly feel his pain.  I just can't believe that the doctors aren't more sympathetic to his needs.  Please try to get him to a neurologist or pain specialist.  He really does need some relief and over the counter meds. are not going to do the trick.

I'm keeping you both in my prayers.  I know it's difficult.  Take care Amy.  

[Me967]

Thanks for the information.  As for the pump with his doctors it is a joke.  It gave me a good crazy laugh though.  LOL  They "will not" give him ANY pain med's other than the Lodine and Neurontin at all due to his age (44) in fear of addiction, and the fact that he will have to go on them later in life.  Grrrr.  It makes me angry because his has to live with so much pain now......  I guess they're waiting until he get's older so that when he can't do much anymore, he will not be in pain.  LOL  Now he has to suffer though.  Urgggg.

Right now if the pain get's tooo bad he is drinking whisky to help for the night to get some relief.  (It is only going to make the neuropathy worse though.)  That is why I was looking for something over the counter that might help some.  Who knows maybe the Neurontin will eventually help.  

Thanks for your help though and I hope you are feeling ok.  My pains that I have seem soo bad at times to me.  Then I look at others and realize I'm probably just being a big baby about mine.  

Take care and Thank you again.  Amy.

[VaBreeze]

Mine curl too :-(   I would think that the CMT Assoc. would know best about the use of the TENS unit in this case.  I use mine for neuropathy (RSD) and it's also good for those achy muscles.

I'm glad they were able to assist you with the braces and shoes.  That is a good start to getting him mobile, but won't address the pain.  You may want to discuss a Spinal Cord Stimulator or Morphine Pump with the Ortho. if the medications do not work for him.

Wishing you all the best and take care of yourself and hubby.

[Me967]

Hi.  Well the Lodine and Neurontin 300 mg twice daily don't seem to be helping yet.  He did go to an Ortho surgeon though and we did find out that he needs to be fitted for special shoes and braces because he had 16 nerves that were greatly effected on there EMG test.  Hopefully the tendons will not have to be cut in his toes.  (They are curling under)

I called the CMT Association about a TENS unit to help with the pain for him and they said it could make it worse as far as the nerves miss firing.  They did tell me though that if he registers with the MDA they will cover the braces.  Plus maybe he can get some other test done threw their clinics.  ;~)  I didn't know until today that CMT was covered by Muscular Dystrophy, so I thought I would pass that on to anyone else out there.

As for the TENS unit I may try that for myself though. ;->  I thought they were alot more expensive than that.  I found one today on a medical site for 30.00.  Anyhow thank you so much for everything.  

Take care;  Amy.

[VaBreeze]

Me967 - You are so welcome and hope he gets better soon.  If ins. will not cover it (and they do charge quite a bit), the TENS can be purchased online with a prescription from his doctor.  There are many selections to choose from and start as low as $49. at some sites.  This may be an affordable option for you as well.

jason80 - These medications work quickly with me.  Same with Lyrica and Cymbalta.  The relief was gained within an hour.  Hence, why I can take it when I need it, though with someone else there may need to be a 'build-up' period.  Everyone reacts to medications differently (as there are some who get no relief from any of these regardless of the dosage).  

[jason80]

Yes, your interpretation is correct. I haven't seen a study on Lyrica, but I bet it is similar.  It doesn't sound like that much pain reduction, but it may improve quality of life significantly. There is no magic pill to reduce neuropathic pain, sadly.

[Me967]

Thank you all for your comments.  He took his first one today.  I'm hoping it helps him.  ;~)  I've been praying on it anyhow.  It took me a long time (3 yrs) to get him to a doctor since his last surgery.   He's just a bit stubborn.  LOL

He has a appt. with an ortho surgeon next week if we can swing it.  Money has been very hard to come by anymore even just for scripts.  It would be nice if he could have some special shoes made for him.  They mentioned MS now as a good possibility.  I hope they're wrong.  The ortho surgeon may be able to kill some nerves (?) or cut some tendons for the toe curling issues.  Again money and time permitting; plus a lot of questions for the ...what if's... down the road.  As for now he's just tired of the pain.  He needs both knees replaced but cannot have it done due to time off and money issues being self employed.

VaBreeze
I thought about a TENS unit a long time ago.  I forgot about it's abilities for pain.   As I said it's only what the insurance will pick up at this time.  I'll have to check into it though.  Since his doctor will not give him pain med's (because of his age...Grrrr) maybe he would ok a TENS unit.  Thank you for that thought.  As far as grasping things, he does not seem to be effected by his hands really that much at this point.  And yes he does keep his feet up as much as possible while at home.

selmaS
He is also taking the generic form gabapentin.  Hopefully it will not cause constipation with him.  He eat's Tums like crazy.  Mainly I think because of taking too many over the counter pain med's though and it effects his stomach.

jason80
As far as depression goes, yes if he could get some relief from this pain I think it would help rather than hurt as far as that goes.  He gets really down but being in pain with no money to boot, plus being self employed adds to it.  Sorry for my ignorance but on your comment... does that mean that if you are at a pain level of 8 on a 1 - 10 scale it would only take you down to a 6.5 - 7?  

Anyhow thank you all again for your comments and your kindness.  God bless you all.

Amy.

[jason80]

A controlled study shows that Neurontin reduces neuropathic pain by ~ 1 to 1.5 points on the 1-10 pain scale after 3-4 weeks and saturates. That is about the improvement I got which is significant with my pain level. Haven't heard much about suicide thoughts, I suspect it's rare. I think people are less likely to think of suicide when they are in less pain.

I have never heard of taking it off and on like Vabreeze mentioned. The time constant is a few weeks (i.e., the efficacy is due to the dose one is taking 3-4 weeks ago) and one typically needs to ramp to get to the level they want.

[selmaS]

Hi...I can not say too much in relationship to the depression side effect of this med....however, I did have a side effect not often thought of which is constipation.I have IBS already so this was not a good thing and I stoped the med.
I was on the generic form called gabapentin.

I am sorry ur DH is having such a tough time and I pray u can find something that works well for him.

Godspeed
"selma"

[VaBreeze]

I am so sorry to hear about your hubby.  I had to look this item up because I wasn't familiar with it.  Due to neuropathy, I have the same symptoms in my foot (but not due to being hereditary).  One thing I must do is either keep a shoe on (to prevent falls) or to keep my foot propped on something so it doesn't hang.  This relieves some of the pulling pressure.

Lyrica or Neurontin may help.  I take a little Neurontin now, but only when it gets severe.  These medications tend to hamper cognitive ability and make it somewhat difficult to grasp certain things.  While it does help with the neuropathy, it isn't without some side-effects.  I've also taken Lyrica, which I prefer over Neurontin.  Neither of them caused me to have depression or suicidal thoughts, but everyone is different.  The only way to know if this will happen is when it is actually taken.  If he does begin it, you should keep a watch for the first week or so and tell the doc. of any changes in behavior (if there are any).  Also, I use a TENS unit (you can google this to see how it works for pain).  I find that it helps.  It may also benefit him to seek a Pain Management specialist...as they would better know how to treat something of this nature.

Again, I'm sorry and I truly empathize with his situation.  I know it is a 24/7 pain that is difficult to rellieve.  Take care of yourself and him.