Hi there
I’m new to this site today and have found the
Reading thus far very interesting. I’m just wondering
If people really think that opiates work as a pain
Relief for TN ??? This is a place I thought I would
Never go but am interested to get a feel from
Others out there suffering and using these types
Of medications.
Andrea,
I have not gone that route either and isn't it a scary thought! In reading other posts there are people on the site who are using opiates for pain relief. I am hoping they send you some much needed advice.
Elaine
Thanks Elaine
It is a scary thought. What type of meds are you taking and how often are your attacks.
Cheers Andrea
Elaine Iles said:
Andrea,
I have not gone that route either and isn’t it a scary thought! In reading other posts there are people on the site who are using opiates for pain relief. I am hoping they send you some much needed advice.
Elaine
Thanks Elaine
It is a scary thought. What type of meds are you taking and how often are your attacks.
Cheers Andrea
Elaine Iles said:
Andrea,
I have not gone that route either and isn’t it a scary thought! In reading other posts there are people on the site who are using opiates for pain relief. I am hoping they send you some much needed advice.
Elaine
I’m Atypical so its kind of lingering in the background 24/7. I was on tegretol / topomax for about 6 years but just this week I am replacing the tegretol with nortryptiline. I’m already less of a zombie!
I had two hospital admissions where I was given morphine orally and intavenously. It only served to isolate the pain to the point it was the only thing I was consious of, effectively making the pain worse.
Hello, Andrea.
Well, typically, with this illness, people tend to stick with whatever works. Opiates are not the answer for everyone, and in my opinion, tend to have a lesser effect on Type I pain, than in Type II, or Atypical.
I am an Atypical TN patient, Type II, and when unmedicated with Opiates, suffer almost constant, severe, pain of a crushing, aching, throbbing quality V2 and V3 branch of my TN nerve and around the area of the Ganglion.
I also take an anti-convulsant and a benzodiazipine, but without opiate medications, in the fall of 2009, I literally did not know how I would make it day to day through the levels of pain I was experiencing. Due to the cocktail of medications, which does include a long-lasting opiate and one for breakthrough pain, I suffer flair-ups of pain only every once in awhile.
This was like a mini-miracle for me as before, pain was driving me to the breaking point of being an inattentive friend, an irritable mother, and non-employable. I am currently thinking of whether I want to go back to work or school, and it is thanks to my pain medication.
There is a difference between addiction and dependency. People become dependent to a variety of medications, not just Opiates. I am dependent upon them for a more pain free life. A psychological addiction to them is not present.
If there were a surgical correction for my condition, I would opt for that route. But, I have suffered with ATN symptoms since 2003. Opiates are the only thing which has ever almost taken them away. Many neurologists will argue that they do not work for "neuropathic pain", yet on the "Facial Resources" website, if one looks up Opiates, it states that many chronic facial pain sufferers claim that they would have been dead years ago without them.
However, whenever I see someone who is able to be maintained on as little medication as possible, I am always happy for them.
Stef
Stef - I really like that you make a distinction between "dependency" and "addiction" to meds. When you really sit back and take a look there is a clear difference between the two. So many people on this site describe difficulties obtaining scrips from pharmacies, etc and I think this kind of distinction is important.
Elaine
Jim is an example of what I was saying above, and I've read of several others who were not helped by Morphine. My current featured discussion gives many examples of medication regimens which work, or do not, including patients whose pain is and is not relieved with Opiates.
This is not a one-size-fits-all illness, especially when discussing Atypicals. It is my belief, after having read of many cases both in the ATN group, forum, and when I greet new members that it is imperative to persevere, and work with their doctors the best the can to find the medication, combination, or procedure which works best.
Jim Richmond said:
I had two hospital admissions where I was given morphine orally and intavenously. It only served to isolate the pain to the point it was the only thing I was consious of, effectively making the pain worse.
Yes, Elaine.
I appreciate you helping me to point out that fact.
The medication is manufactured for pain patients. That is it's intended use. Recreational users and addicts make the process of getting health care professionals to believe that one is not a drug seeker, especially when they have an "invisible illness", such as many cases of TN an ATN, where a source of compression is not found and M.S. is not present.
Through extensive reading on the subject and communication with others who have Atypical TN, especially, I have learned that Opiates do have their place in improving the lives of many who suffer with chronic facial pain.
Elaine Iles said:
Stef - I really like that you make a distinction between "dependency" and "addiction" to meds. When you really sit back and take a look there is a clear difference between the two. So many people on this site describe difficulties obtaining scrips from pharmacies, etc and I think this kind of distinction is important.
Elaine
Hi, Nina.
I am happy that you have a husband who helps, but I cannot begin to imagine the challenge you are soldiering through given the disintegrating discs, and TN.
My late husband's mother suffers with disintegrating discs. Lyrica has helped her immensely. However, she also takes Morphine 60 mg. a time, as well.
She is now able to clean and organize her house. She even helped me with several yard sales I had this past summer.
I hope you find better relief a.s.a.p., as well!
Hugs,
Stef
Anita Hall said:
Hi. I have only really been reading the posts, never answering or asking before but i thought i would interact with this. I am a newbie on the site, i have Type I TN. But i also have a disintegrating spine and Primary lymphodeama in the legs, I have been on Morphine MST now for nearly 3 years and some times need the help of liquid Morphine occasionally. With out these i would not be able to get out of bed litterally. Even with this help, my Hubby has to pull me up and then get me to a standing position.
But i havenot found it helps at all with my TN. I only wish it did,
This is only my opinion but i hope it helps in some way. Sorry about my spelling, Having a real bad time at the moment.
Good luck with finding some sort of help.
Heres to a pain free day some day.
Nita x x
I am glad the Nortryptiline is working better for you. Wow! Tegretol didn't ever do anything for my pain. The only effect I could ever tell it had was to make me slightly dizzy.
However, Neurontin has been beneficial in keeping the burning in my cheeks and gums under control.
Elaine Iles said:
I'm Atypical so its kind of lingering in the background 24/7. I was on tegretol / topomax for about 6 years but just this week I am replacing the tegretol with nortryptiline. I'm already less of a zombie!
My hats off to you Anita. I have a friend with Disc damage / Spinal nerve damage and she will likely be a morphine lifer. Just goes to show you Andrea that for various diagnoses, opiates are useful and do help some patients. Unfortunately, like Anita has described, most of these patients are already experiencing lessened quality of life issues.
Elaine
Hey Stef,
Thank you so much for your comments. You are very knowlegable as you should be. I can't imagine having to deal with this for the length of time you have . That thought frightens me. I am still learning and reading and am so happy to find this sitet as i feel it is going to help me tremendously.
You are so right in saying that each and every person is different and it is a matter of finding the right coctail that suits individual needs. As everybody's body reacts and works in different ways. I find it interesting to hear how other people are coping as i personally feel TN is taking over my life. I went from a person who probably had 4 panadol a yr to a person throwing hand fulls of pills down her throat and still no relief. You have given me hope that one day i will find a coctail that agrees with me and allows me to live a normal life again.
Cheers Stef :)
Stef said:
Hello, Andrea.
Well, typically, with this illness, people tend to stick with whatever works. Opiates are not the answer for everyone, and in my opinion, tend to have a lesser effect on Type I pain, than in Type II, or Atypical.
I am an Atypical TN patient, Type II, and when unmedicated with Opiates, suffer almost constant, severe, pain of a crushing, aching, throbbing quality V2 and V3 branch of my TN nerve and around the area of the Ganglion.
I also take an anti-convulsant and a benzodiazipine, but without opiate medications, in the fall of 2009, I literally did not know how I would make it day to day through the levels of pain I was experiencing. Due to the cocktail of medications, which does include a long-lasting opiate and one for breakthrough pain, I suffer flair-ups of pain only every once in awhile.
This was like a mini-miracle for me as before, pain was driving me to the breaking point of being an inattentive friend, an irritable mother, and non-employable. I am currently thinking of whether I want to go back to work or school, and it is thanks to my pain medication.
There is a difference between addiction and dependency. People become dependent to a variety of medications, not just Opiates. I am dependent upon them for a more pain free life. A psychological addiction to them is not present.
If there were a surgical correction for my condition, I would opt for that route. But, I have suffered with ATN symptoms since 2003. Opiates are the only thing which has ever almost taken them away. Many neurologists will argue that they do not work for "neuropathic pain", yet on the "Facial Resources" website, if one looks up Opiates, it states that many chronic facial pain sufferers claim that they would have been dead years ago without them.
However, whenever I see someone who is able to be maintained on as little medication as possible, I am always happy for them.
Stef
Wow Elaine,
Six years of this 24/7 makes you an amazing lady. I'm six months of hell and had enough. Tried several med's and pain just keep on coming on a daily basis. I have no memory bank and the joke in our house is my sister thinks she should start up a dictionary for Andrea's Words (mumble jumble) but they get it and we have a laugh about it. So Zombie i get!!!!!
Elaine Iles said:
I'm Atypical so its kind of lingering in the background 24/7. I was on tegretol / topomax for about 6 years but just this week I am replacing the tegretol with nortryptiline. I'm already less of a zombie!
Hey Jim,
Your profile pic say's it all. Any tips on how to change profile pic, as it whipped it off my FB page before i new what was going on haha
Jim Richmond said:
I had two hospital admissions where I was given morphine orally and intavenously. It only served to isolate the pain to the point it was the only thing I was consious of, effectively making the pain worse.
Cheers Anita
Appreciate your reply as every little bit helps. After reading your reply i actually now feel that mine is a drop in the ocean. I hope your having a better day today.
Andrea :)
Anita Hall said:
Hi. I have only really been reading the posts, never answering or asking before but i thought i would interact with this. I am a newbie on the site, i have Type I TN. But i also have a disintegrating spine and Primary lymphodeama in the legs, I have been on Morphine MST now for nearly 3 years and some times need the help of liquid Morphine occasionally. With out these i would not be able to get out of bed litterally. Even with this help, my Hubby has to pull me up and then get me to a standing position.
But i havenot found it helps at all with my TN. I only wish it did,
This is only my opinion but i hope it helps in some way. Sorry about my spelling, Having a real bad time at the moment.
Good luck with finding some sort of help.
Heres to a pain free day some day.
Nita x x
Andrea,
I am glad you are finding this thread useful but don't minimize your own pain and feelings just because you don't think you are a bad as someone else. I noticed to Anita you said your problems seem like a "drop in the ocean". Personally, knowing people are worse than me help me make it through each day, but I hope you are not feeling your health and concerns are less important. I am not trying to lecture - I just want to re-assure you that we are here and you should continue to ask questions, big and small. At one point we have all been 6 months in, just like you.
Elaine