Narcotics for pain relief from atypical TN


#1

Hi,

I’m wondering if anyone has tried or been perscribed a pain relief regiment for atypical TN. I’m so frustrated. The only thing that seems to work for me right now is vicoprofen or percocet. I’ve been in pain since NOV 2006. I’ve had dental procedure after dental procedure. Then diagnosed with TN. Tried acupuncture, and ultracet, neither works. I know the pain meds work, but can’t get a dr. to give me enough to keep me out of pain. I’ve just started nerontin 100 mg last night. My GP gave me 20 5/500 vicoden I have to take 2 to get relief. They are treating me like an addict. I have no addiction problems, just chronic, unrelentless nawing and burning pain in my tooth on my lower left side!!! I can’t believe dr’s will leave me in discomfort until they figure out what is going on. This sucks!!! Anyone have any suggestions?
Thanks Beth


#2

I think I may have atypical TN , But no one is sure what exactly I
have. I started Neurontin , but 600 - 800 a day now, with vicoden 2
tabs 2x a day and advil 4x a day, That seems to work for now, I
suspect if the neurontin gets to a therapeutic level I’ll be able to
go off vicoden!!! Thanks for the reply

On 7/2/07, walnutvalleygal
trigeminal-neuralgia-cpt4788@lists.careplace.com wrote:


#3

I’m fairly new to TN myself. First, are you sure that you have TN? If so, regular pain meds don’t touch it. I’m on a “cocktail” of neurotin and lyrica that is keeping things OK for now. Good luck :-)!!


#4

To::
Walnutvalley gal
Yes my doctor said it was TN. Right now he uped the doze of Lyrcia and it
has helped. For 10 years my other health care PA said it was shingles. But
the article I . got on the internet describes my pain exactly. When the
pain comes it just about puts me on the floor.
Good luck to you also
----- Original Message -----
From: “walnutvalleygal” trigeminal-neuralgia-cpt4788@lists.careplace.com
To: lovehnl@comcast.net
Sent: Monday, July 02, 2007 11:55 AM
Subject: Re: [trigeminal-neuralgia] Narcotics for pain relief from atypical
TN


#5

Hello all. I am on a combo of Neurontin and Tegretol for Trigeminal Neur. According to my neurologist and my own experience, regular pain meds such as codeine, have no effect on this thing. Its not a typical pain such as a sprained ankle or a broken wrist. TGN is in a class all by itself. To me, the pain feels like somebody scalding you with hot grease.


#6

Thanks for your input. My pain is in my face, just the one side, when it
started 12 years ago I couldn’t stand for anyone to touch my face. Even a
breeeze would set it off. It is such a pain it puts me on the floor. It
can be a few seconds or sometines three or four minutes.As my PA said it was
shingles and there was nothing to do. I took their word for it. D;oesn’t
matter there really isn’t to mcuh to be done
LL
----- Original Message -----
From: “clloyd” trigeminal-neuralgia-cpt4788@lists.careplace.com
To: lovehnl@comcast.net
Sent: Thursday, July 05, 2007 9:39 AM
Subject: Re: [trigeminal-neuralgia] Narcotics for pain relief from atypical
TN


#7

Hello, Beth. I agree with WalnutValleygal. As a rule, narcotics are of no absolutely no help against Trig. Neur. I know because I took Tylenol #3 and Vicodin, and they did nothing. This is not a normal type of pain, such as a sprained ankle or a broken wrist. It comes from abnormal nerve activity and the goal of the medications is to stop that nerve activity. I am not a doctor of course and cannot diagnose you, but this is just an opinion. I do hope that you find some help.


#8

How did u get ur doc to even give u pain meds to try? I am having a hard time convincing mine to let me take pain meds along with my Lyrica.


#9

Hi BEW. I know that I am coming into this discussion a bit late but I thought I would add my two cents worth. I have TN and Atypical Facial Pains. I have been diagnosed by several neurologists. I have sufferd with this for several years.

The pains can be so awful. Sometimes there is no and I mean no let up. I also get TN pains. I am on several anti seizure drugs. My neurologist does not believe in pain meds. My saving grace is that my neurosurgeon does. You see I had gamma knife surgery in 2004 that back fired on me. it left me with even more pain. He wrote my neurologist and my general practioner a letter recommending pain meds. my neurologist refused however sent me to my gp. I take narcotics when needed. I find I don’t need them all that much.

I even went to a pain clinic they put me on methadone in addition to pain meds and all my anti seizure drugs. For me that was just way to much meds and to much zombieness. I only take the narcotics to stop the cycle of pain when it is more than I can handle.

For years I would not even think of taking narcotics because of all I had heard that it would not work and that I would become addicted to them. “NOT”. Hang in there. Do your research.
Cheryl P.


#10

I moved to Mexico…much better down here…NO DEA… the bastards suck…To many stories like yours,…its easy to get what you want down here. good luck

jess78 trigeminal-neuralgia-cpt4788@lists.careplace.com wrote:


#11

Hi, I am sorry you are having such a time with your doctor and giving you pain medication. It is all so very frustrating.
I have had TN since 1991. I was in remission twice and relapsed again 2004. I had gamma knife in 2004 but it was not successful.
The neurologist I had prior to my last relapse had left the state so I was forced to find a new one in 2004. She does not believe in giving pain medication but was good at loading me up on anti seizure drugs to the point of zombieness. I totally understand the feeling of not wanting to get up. It is hard to go on when you are in so much pain and you cannot function due to the meds. November 2007 I decided to try a different neurologist who had been recommended to me by my podiatrist. I have to tell you that I feel like a new person.
Dr Krane took me off most of the meds that the other neurologist had me on. He was shocked that I was on three anti seizure drugs from the same family of drugs. He left me on Lyrica but lowered the dosage to 100 mg three times a day. He changed my anti depressant meds to noritriptyline and then added bacolfen. The dosages have been increased since November. I have had a few break through pains. I deal with that by taking oxycodone. I no longer have to go to my GP to get my prescription filled for the oxycodone as the neurologist will fill it. He also had put me on clonazapam (low dose) to help me sleep.
I notice that if I have a day where I am talking alot I get break through pain. Caffine will cause me to get migraines and sometimes increase the TN symptoms. I try to avoid it like the plauge but there are days when I really want some chocolate or a coke. Yikes… I pay for that!!!

I have had extra stress on my body since the new doc. I had a total knee
replacement done in November 2007. This was my fourth major surgery since June 2005. Three major knee surgeries and a bilateral masectomy followed by three very bad infections from breast reconstruction. The stress on my body from the medical problems can cause me to have extra TN pain. While recupping from the latest total knee replacement I have developed weather and exercise induced asthma along with panic attacks from the meds.
I am hoping and praying that the latest problems with breathing and panic attacks will clear up once I can let my body rest. Then I will just have the TN to deal with and hopefully that will either go back into remission or the meds will be able to take care of it.
I do get frustrated when I read about how easy it is to treat TN now that there is MVD surgery as well as Gamma knife and other procedures. Well, for some of us the surgeries aren’t an option of just aren’t successful which means that TN is something that we will have to deal with forever.

Enough of this long boring story… If you don’t feel like your doctor is listening to you and helping you…by all means look for a new one. It took me awhile to make the change but I am glad that I did. I am also glad that I have such and understanding GP who is willing to take up the slack if need be.


#12

In reply to the comment about opiads not working… well I once believed that. After all, that is what the docs who don’t want to prescribe narcotics tell you.

Well, after three years of pain and only being on anti seizure drugs which were constantly being increased due to the pain I decided I had enough. I couldn’t live like a zombie and still have pain. I read so many posts from patients who were taking narcotics and getting relief I decided to give it a try. My neurologist would not prescribe them so my neurosurgeon wrote a letter to my gp stating they would help with the pain.

There would be days when I just needed a break from the pain and pain meds would give me that. It seemed to stop a cycle so I could rest.

Now I have a monthly prescription for the meds. I have days and weeks when I don’t need them but I feel a great source of relief just knowing that I have them if needed.

Some of us are in constant pain and trust me the pain meds can give relief.


#13

Jess, in response to your question about how did I get the doc to give me pain pills. Well, about a year after I relapsed I was diagnosed with breast cancer. Just the stress from that caused my face to go haywire. It was going to have to wait about a month for my bilateral masectomy. Every day I could feel my face getting worse. One day I called the neurologist office just in despirate pain… I couldn’t stand it one more minute. They completely refused to help. They said their office did not believe in giving narcotics for chronic pain but they did suggest to call my primary care doc which I did. My doc knew everything that I had been going through and was very very sympathic and helpful. He immediately gave me a months worth of hydrocodone ( which I now have swithced to oxycodone). I signed a pain contract with him and have never had a problem getting the prescription refilled. I also talked with my neurosugeon who did my gamma knife surgery that didn’t work. He knew I was in pain and wrote letters to both my neurologist and primary care doctor recommending pain meds. If course the neurologist refused.

When I interviewed my newest neurologist, Dr Krane in Seattle, a huge concen for me was I needed a doctor who would work with me and be willing to give pain meds. Not a problem.

For a few years off and on I was involved in another TN on line support group. I found that a good many people were taking pain meds with success. You just have to be sure that you are not abusing the drugs. If you really have pain it will help and you won’t be addicted. You do need to be careful of the type of meds you get.

I wish I had not waited so long to search for a new doctor. I had tried a couple pain clinics but I was not happy with the level of service… plus I think the doc was getting Alzheimers.

The problem in searching for new docs is that when you are so sick with pain it is such a burden to take the time to find someone that can help.

Some folks use a lot of pain meds in fact some only use pain meds. For me I have found that the right combination of meds, (Lyrica, noritryptiline, bacolfen) take care of 90% of the pain and sensations. Without the meds I am in pain 24/7. Constant unrelentless pain with symptoms changing almost by the seconds. I don’t know how long these meds will help… I hope forever or until I go back into remission. I really puts me a ease knowing that if I have a bad pain day that I can get some escape by using my pain meds.

Jess… good luck. Things will get better. They really really will. I can’t promise it will go away but I do feel that you will be able to get relief.

Cheryl P.


#14

Hi Jess,My story is very similar to the rest. I started pain pills with my
oral surgeon. I was seeing him monthly, and having procedure after
procedure. I had 3 root canals, 3 apico’s, and then 3 teeth pulled. Then I
had a forth root canal, and apico. I was on pain meds on and off for 4
months. I was refereed to a Neurologist. He diagnosed me with multiple
things, one was atypical TN. Never gave me a pain pill, or anything else. I
was in so much pain for months on end. I tried Acupuncture, but it made
things worse. In desperation I went to dr. after Dr. after endodontist,
facial pain expert. No one would give me anything for my pain. I spent 5
months crying every day to my family . I have 2 small children ages 2 & 5. I
was out of my mind!!! I finally went to my Primary Dr. Thank god I did.
They started me on Lyrica, Oxycodone. Then I saw a Neurologist, and
Rheumitologist. I have a team. They all talk to each other. I am now on
Oxycontin, Lyrica, Pamelor(antidepressant for pain), and Percocet for break
through pain. I am 75% better . I feel so thankful for my Dr. who was so
sympathetic, and worked with me so closely. I see him every 2 weeks to check
in. We may start to go down on some pain meds, and see where we are at.

Unfortunately you have to shop for a Dr. that is right for you. Stick up for
yourself. The pain is real, and no one should have to live in chronic
pain!!!
Beth good luck!

On Jan 16, 2008 12:35 AM, jess78 <
trigeminal-neuralgia-cpt4788@lists.careplace.com> wrote:


#15

The best thing to do for getting on pain medicines is to see a pain
specialist. They are trained in how to administer and know which
medications work for which pains - or at least it is more likely that
they will know compared to my experiences with general docs and
neurologists who gave very inaccurate info.

Good luck and search the net for possible connections with the Bells
Palsy - I’m sure you have heard about the artificial sweetener
connection to BP thing - I’m not sure if it is accurate or not, but
it sure is everywhere.

Denise in OR

On Jan 15, 2008, at 9:35 PM, jess78 wrote:


#16

Well, I feel for you and know how it is in not knowing what you have. In fact I think we all in this group have felt the frustration that you are going through. As to if you have TN or not that is not up to us to judge what you have. I know that I had to go to the ER several times before the doctors finally figured out that I was indeed having pain. Once you have a diagnosis they won’t be as judgmental especially if you go to a Neurologist or a Nueropathic Pain Management Physician. I take Dilantin 300mg, Nortriptiline 200mg and OxyContin 10mg. The OxyContin is the lowest dose however it helps with the breakthrough pain on the cold days or when I am stressed and the TN/ATN flares up. Anyway, I hope you get the some pain relief.

Take Care,
Rachel :slight_smile:


#17

I have took all the common medications and I’m on trileptil, cymbalta, ativan and methadone. I have found that the narcotics work for me but only if I take enough of them. I’ve had a MVD and Gamma as well as injections, the MVD helpped a little for a short time the gamma gave me a little more relief for a little longer. I am on lots of methedone, 1200 mg a day. I also think the addition of the antixity medication is important. I have had the strikes go off so bad that it has caused problems with my heart and made the heart monitor alarm go off. I’m at my ropes end. But honestly if I didn’t take narcotics I don’t think i could take it.

June


#18

I know the feeling. So far, (because I’ve had it go away before) I’m using Lyrica. I’m also on an antidepressant Zoloft. They put me on that when my husband died.
L

-------------- Original message --------------
From: RareOne trigeminal-neuralgia-cpt4788@lists.careplace.com


#19

Hi, I’m new here my doc, gave for TN Trileptal but I can not take it in morning. This med make so dizzy that I can’t drive to car to work, and I can’t loose my job!


#20
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