Methadone use for TN pain

1

I went to my PM (pain management doctor) yesterday. I have bilateral TN and ATN on my left side.

I kind of knew that Methadone was going to be one of my next options but I had no idea that was going to be one of the few options I have left.

PM has now added 5mg of Methadone twice a day, in addition to Baclofen 10mg three times a day, Tegretol 400mg twice a day, Norco 7.5/325 twice a day as needed, Flexiril 5mg every 6 hours as needed, Klonopin 20mg twice a day, and Effexor XR 150mg once a day. These are just my TN drugs this does not included the meds I take for high blood pressure, diabetes, GERD, colitis, or the chemo meds I have to take everyday for the rest of my life.

I go back to PM in two weeks to see how the Methadone is working. I am leary of this but I just don't know what to do.

All the information I have found online about Methadone is addiction related not for use as a pain controller.

Has anyone ever taken Methadone for TN?

What was your experiences with it?

Did you have to deal with the stigma of being accused of being an addict?

I guess I just wanted to know what others experience with this has been.

Thanks so much!!

LaLa

2

I have not taken it yet. I am still waiting for it to be delivered.

3

Hi LaLa,

I have been using methadone for pain control for over a year now, gabapentin didnt seem to touch the pain I felt. Its great that small doses in comparison to which they use for addiction withdrawl work fairly good for some nerve pain. Its a great long term solution for me as I am at this point inoperable. I dont advertise unless people ask, I often had med changes so it was not an issues to say I had my meds changed. For those that looked shocked that did know i explain how a baby dose is able to help people with TN because of how it works with different pain recepters etc ..... they seem fine after that. lol. I have congnative memory loss and fatigue but that can be from the fact my body is dealing with chronic pain even though the medication dulls it to a more bareable level and I have been though alot the last two years. I hope this give you some peace of mind. It was prescribed to me by a pain specialist at the cancer agency I dealt with after my surgery to have a skullbase tumor removed. They have been so supportive, im lucky to have a great team of specialists.

I hope it works well for you,

take care,

Tracy

4

Dear La La,

Methadone does not take away all of my pain, but it has been the most effective medication I've tried thus far in years of experimentation with many medications of many classes.

Methadone works better than many drugs in it's class in the treatment for Trigeminal Neuralgia due to the fact that it interacts with NMDA opoid receptors, wheras others do not. This makes it better at helping with pain of neurological origin. I had read this, but it was also explained to me by my physician. It is gaining more widespread usage and acceptance to be utilized as an analgesic to deal with chronic pain. The dosages used to help with addiction are typically high enough to block the effects of all other opiates, not so with the treatment of chronic pain using this particular drug. The dosages used for analgesia are usually much lower.

I have experienced prejudice at a couple of pharmacies. Whenever I run into this, I change pharmacies. I am their customer. It is not their place to judge me. I do not abide by it. After fighting this long, painful fight struggling with this beast called Type II Trigeminal Neuralgia for years, I feel that I deserve to be treated with dignity. (Any patient does, but I am adamant about demanding respect from healthcare providers, and pharmacists. If I don't get it, I take my business elsewhere the next month. I am thankful to have a Pain Management practice who understands my dilemma.)

I take a couple of other medications, but the Methadone does the lions share of the work in keeping me functional for my children. It's been a godsend. I am raising girls, 16 and 8 years of age. They are demanding. Being a stay-at-home Mom is more demanding than the jobs I used to have. I was a Mortgage Loan Processor, or Mortgage Loan Closer for the bulk of my career.

Best of luck with your new medication. We all seem to respond better to different medications. Unfortunately, I see that there is no "magic bullet" for us with this affliction. Some swear by Neurontin, or Lyrica, etc. I am happy for those people. I wish I responded well to medications which come without the stigma attached to this class of meds.

I am happy for Tracy. She has told me that, where she lives, she does not have to cope with the problems I have had to coming with having to take Methadone for pain control. But, Methadone is far from the only medication that chronic pain patients face a stigma for needing. Us chronic pain patients who need to use opiates/opoids for pain control and functionality in daily living, unfortunately, face undue scrutiny. I could go into a rant about the factors which contribute to this problem. I'll spare you all. Needless to say, it makes me irate!

Best wish for finding effective relief.

Stef

P.S. Excuse any type-o's. I didn't proof. I am in a time crunch to take my daughter to the salon this morning. She's been waiting for this day for a few weeks. :)

5

Stef,

Thanks so much for your input. I feel the same as you do in regards to being treated with respect as a patient. I have had to deal with some real nasty people as I am sure you have.

I have taken Neurontin and Lyrica and had no relief.

I am praying the Methadone helps me.

LaLa

6

Thanks Tracy,

I also have a cognitive memory loss from the MVD. I have a slew of issues from the MVD.

I greatly appreciate your input,

LaLa



Tracy C from BC said:

Hi LaLa,

I have been using methadone for pain control for over a year now, gabapentin didnt seem to touch the pain I felt. Its great that small doses in comparison to which they use for addiction withdrawl work fairly good for some nerve pain. Its a great long term solution for me as I am at this point inoperable. I dont advertise unless people ask, I often had med changes so it was not an issues to say I had my meds changed. For those that looked shocked that did know i explain how a baby dose is able to help people with TN because of how it works with different pain recepters etc ..... they seem fine after that. lol. I have congnative memory loss and fatigue but that can be from the fact my body is dealing with chronic pain even though the medication dulls it to a more bareable level and I have been though alot the last two years. I hope this give you some peace of mind. It was prescribed to me by a pain specialist at the cancer agency I dealt with after my surgery to have a skullbase tumor removed. They have been so supportive, im lucky to have a great team of specialists.

I hope it works well for you,

take care,

Tracy

7

I have been having the most horrible 3 days in a long time. It has been the horrible ATN beast attacking me. I finally got my meds delivered on Monday afternoon that should have been here Friday.

So I now have my 3rd dose of Methadone in me and I have noticed a difference. It has seemed to help in just the short time I have been taking it. It is only 5mg twice a day but I am pleased.

I do have some increased hot flashes which he told me was a possibility, tiredness, some dizziness, and a little bit of nausea. So far so good. I go back to see the PM doctor on the 26th.

Thanks for everyone for the advice and information!

LaLa

8

This is day 3 on the Methadone. WOW...

Today I was out with my Mom, she thought it would be good for me to get out of the house for a bit. So we went to the store and I was pushing the cart and my Mom looks at me and says "Are you okay? You look like your going to pass out." I smile my fake smile and say yeah I will be fine. So she cuts the shopping short and we start home only after we stop and grab a burger and a coke because she was afraid my sugar had dropped.

We head home, I take 2 bites of the burger and start driving down the highway and I grab my face and start knocking on the window. THANK GOD, my Mom speaks fluent "Anna"because she immediately pulls over and I wail the door open into some bushes and begin vomtting profusely.

I finish and I ask her how she knew. She smiles and said "I speak fluent Anna" besides I read the side effects of the Methadone and seen that nausea and vomtting were one and I just assumed that is what it was". She smiles that loving smile at me and says besides your my daughter and I know regardless of that fake smile you tried to fool me with that you were not doing so hot.

I am so thankful for her especially today, it was bad and she was on point even if she did say I looked like a pale pasty zombie. Ok well I do, but still... HAHAHA

Thanks for listening to me.

LaLa

9

The Norco My neuro just gave me the other day its 5/325 plus I take 1200mg of trileptal and I take Effexor xr but its only 75 mg per day. I also take topomax 50 mg for migraine prevention and for pain too. So not quite as much as you do but if it works for the pain you can't get addicted to it. I am just startin to feel a differene with the trileptal but we may to up the norco or add somethin else cuz I really don't want to go up any further on the trileptal.....

Peace,

Min

10

Dear La La,

Maybe one of the other medications is not mixing well with the methadone. I hope that you feel better soon. I am sorry to hear that you got sick!! :(

La La said:

This is day 3 on the Methadone. WOW...

Today I was out with my Mom, she thought it would be good for me to get out of the house for a bit. So we went to the store and I was pushing the cart and my Mom looks at me and says "Are you okay? You look like your going to pass out." I smile my fake smile and say yeah I will be fine. So she cuts the shopping short and we start home only after we stop and grab a burger and a coke because she was afraid my sugar had dropped.

We head home, I take 2 bites of the burger and start driving down the highway and I grab my face and start knocking on the window. THANK GOD, my Mom speaks fluent "Anna"because she immediately pulls over and I wail the door open into some bushes and begin vomtting profusely.

I finish and I ask her how she knew. She smiles and said "I speak fluent Anna" besides I read the side effects of the Methadone and seen that nausea and vomtting were one and I just assumed that is what it was". She smiles that loving smile at me and says besides your my daughter and I know regardless of that fake smile you tried to fool me with that you were not doing so hot.

I am so thankful for her especially today, it was bad and she was on point even if she did say I looked like a pale pasty zombie. Ok well I do, but still... HAHAHA

Thanks for listening to me.

LaLa

11

Thanks Min,

I think the Norco helps me better than the regular Vicodin ES ever did. I took topomax before and the only thing it did was drop my sugar because I never ate and I kept bottoming out so he took me off of it. I lost ten pounds too so I liked that. lol I have never heard of Trileptal, what is that? I know I worry about the addiction part of all these meds but I am so blessed that I have my Mom who addamantly keeps an eye on all of my meds so there is no abuse or addiction. She goes to all my appointments with me. She is very involved in my treatment and care. I could not have hand chose a better Mom than her.

I guess it also helps that I moved back in with my parents when I first got diagnosed because I could not afford my rent and utilities because I kept missing too much work. My parents are fantastic in helping me to cope in the fact that we cope together as a family.

Min C said:

The Norco My neuro just gave me the other day its 5/325 plus I take 1200mg of trileptal and I take Effexor xr but its only 75 mg per day. I also take topomax 50 mg for migraine prevention and for pain too. So not quite as much as you do but if it works for the pain you can't get addicted to it. I am just startin to feel a differene with the trileptal but we may to up the norco or add somethin else cuz I really don't want to go up any further on the trileptal.....

Peace,

Min

12

I have been experiencing some severe insomnia since I started the Methadone. I was up until 5:30AM today and I only slept until 10AM. The day before I was up until 4AM and slept until 11:30AM.

I was just curious if anyone else experienced that with Methadone?

LaLa

13

Yeh, it's good that you have your family with you so close to help you. Trileptal is an anti convulsant for ATN for pain its real name is oxcarbamazapine??? spelling I take it twice daily 6oo in the morning and 600 in the evening.it is working pretty good now. getting there. I have ATN. But I think I mentioned I did have one TN attack. Scared the Ba Geebees outta me.

Good luck with the sleeping... I hope it gets better for you. Sounds like they need to adjust something for you.

Best wishes, Min

14

Thanks Min,

I take Tegretol and also have ATN. I will have to talk with my Neuro about that. It just may be something that will help better than the regular carbamazemine (Tegretol) that I take.

I finally slept all night last night. It was so refreshing!

LaLa

15

Methadone Day 4:

I finally slept all night last night! YAY! I felt decent most of the day until this afternoon, I got this flushing feeling from my toes to my head, I turned pale and became very nauseated.

On a lighter note, my head feels better! So I guess it is working. I know the side effects are supposed to subside after you adjust to the Methadone but WOW!

Thanks for listening!

LaLa

16

HOOT!! HOOT!! :D P.S. La La that was for sleeping all night finally!!! :) Min

17

Hello, La La.

Lyrica is the most recent addition to my medication regimen. I have only been trying 75 mg. daily. I cannot tell a difference, and wonder if it will be increased upon my next Pain Management visit.

Thank you for the validation below.

I am sorry that you are having some trouble with beginning your Methadone treatment. I have that problem, but I do not believe it is due to Methadone. I am able to tailor my own sleep schedule when I want to. My sleep troubles, I attribute to simply being a night own, but am trying my best to practice better sleep hygiene. Sometimes, I believe it is because my husband is a 3rd shift worker and I sometimes stay up with him on weekends. It has whacked my sleep schedule out. But, I am working on it.

I hope that this problem corrects itself for you very soon.

My ex sister-in-law was a back pain patient who used Methadone for chronic pain and was also an insomniac. Perhaps, there is a correlation between the two.


La La said:

Stef,

Thanks so much for your input. I feel the same as you do in regards to being treated with respect as a patient. I have had to deal with some real nasty people as I am sure you have.

I have taken Neurontin and Lyrica and had no relief.

I am praying the Methadone helps me.

LaLa

18

I have taken Lyrica before and did get relief from it. The only reason I stopped taking it was because we added cymbalta into the mix and my neuro was'nt sure which one was giving me the rash. But I'm pretty sure it was the cymbalta. If push comes to shove. I'd try it again if the trileptal stops working for me. Best wishes to you, Stef.

Peace, Min

19

Hi Stef,

I am a night owl too, I always have been but I was usually in bed by 4am at the latest. Maybe it is just all the thoughts racing through my mind as well. Good luck with the Lyrica. I really liked it while it worked.

LaLa

Stef said:

Hello, La La.

Lyrica is the most recent addition to my medication regimen. I have only been trying 75 mg. daily. I cannot tell a difference, and wonder if it will be increased upon my next Pain Management visit.

Thank you for the validation below.

I am sorry that you are having some trouble with beginning your Methadone treatment. I have that problem, but I do not believe it is due to Methadone. I am able to tailor my own sleep schedule when I want to. My sleep troubles, I attribute to simply being a night own, but am trying my best to practice better sleep hygiene. Sometimes, I believe it is because my husband is a 3rd shift worker and I sometimes stay up with him on weekends. It has whacked my sleep schedule out. But, I am working on it.

I hope that this problem corrects itself for you very soon.

My ex sister-in-law was a back pain patient who used Methadone for chronic pain and was also an insomniac. Perhaps, there is a correlation between the two.


La La said:

Stef,

Thanks so much for your input. I feel the same as you do in regards to being treated with respect as a patient. I have had to deal with some real nasty people as I am sure you have.

I have taken Neurontin and Lyrica and had no relief.

I am praying the Methadone helps me.

LaLa

20

I found a great video about the importance of keeping a strick schedule when taking opiates as some like methadone stay in your body long after the analgesic effect is gone. Please watch when you have time, a great reminder for me to not get lazy and skip doses if I’m tired.

http://www.withdrawalcure.com/2012/preventing-overdoses-when-using-methadone-to-treat-chronic-pain-april-2009/18/01