hi I'm new to the forum ..jake jerde:) I have some pain lately ...i tried nurontin ..and tegrol though the sleepy and drowsy makes me goofy ,i think breaking halfs is good for light doses though i think better than nurd meds ...are pain meds :) ? there nothing wrong in taking pain pills
I haven’t tried pain meds. I’ve had three docs say they don’t work well for this type of pain. I hate the way neurontin and tegretol make me feel, but they worked for me.
Hi Jake,
I take 2700 mgs. of Neurontin a day. It keeps the TN1 and 2 at bay for now. It does make me foggy minded and forgetful. It takes me three times as long to do anything but at least I am not crying and vomiting with pain. Also, by the end of the day my whole body is weary and achy from trying to work a normal day. I also have disintegrating disc in my neck that give me severe pain so I take a 7.5 percocet around 6 pm each evening. It takes away the edge from it all and gives me a feeling of painfree relaxation for a few hours before I go to bed.
Pain meds really don't take away nerve pain but they do take the edge off the pain along with anticonvulsives.
I hope you soon find what gives you some relief from the pain!
Yvonne
To keep a lower dose of meds - I used lidocaine patches from the doctor. Somehow that topical relief gets to the nerves in the face and makes life bearable without being all druggy!
Hi Jacob,
Pain pills/ narcotics/ opioids have the good and the bad sides to them. Most doctors will not prescrib these until all other avenues of medications or majority of them have be tried. Also depending on the type of TN they may not work for the TN pain and also it depends on the patient’s body chemistry if this group of medication will help with the TN pain. I my self caution the use of this group of medication for several reasons. There is dependancey, addiction, judgment from society, side effects, and so many reasons. My husband and I really weighed the good and the bad when I went on this group of medication to help CONTROL the pain, and no I am never really pain free and most the time my pain level is about a 6.5 or 7 on the pain scale. If you would like a better discussion on this please join the opioid therapy group in the groups section. Hope that helps answer you question a little and if not please feel free to join the mention subgroup and start a discussion on this. Hope you have a pain free day.
I personally don't take any meds. I hate them and would rather suffer through the pain then deal with the side effects. I don't have it as bad as some though and had been in remission for the past two years although it is back now. There is no way I could work when on the meds as I need to be very alert but that is just my chopice. As for pain meds they scare me and I don't think that they would take effect in time when an attack happens.
Hi Candy, I was on Tegretol and it made me feel awful. Then I was put onto Degrenol which apparently is the same thing. Apparently the only reason it doesn't makemefeel worse is the preservatives. That's what the specialist told me.
There are many people on here that use pain meds and they are a life saver to them, myself included. I know that for some people, pain meds don't work. But for some of us they are very effective, with the use of other meds such as anti-siezure, trycilic anti-depressants and muscle relaxers. I do not think that doctors should make a blanket statement that pain meds don't help with TN pain. As far as side effects, there are side effects with all the meds we have to take and each person has to weigh the good with the bad. As far as society goes, I struggled at first with the notion that if I use narcotics people will think bad of me. But I got over that pretty quickly when I realized these drugs were actually helping. We have a horrible disease and we do what we can to try to live as close to a normal life as possible. Okay, I am getting off my soap box now :)
Hope this helps! Hoping pain free or at least pain-less days for all of us!
Neurontin never helped. Tegretol made a very small difference but not enough. I eventually had to go the pain medicine route. I rarely took narcotics at home. But that was because the doctors didn't want to prescribe it, not because they didn't help. Unfortunately, my doctors preferred me going to the hospital and getting pain meds there instead of them prescribing them. Sometimes, they would help. Other times, they would just take the edge off enough to where I could control not bashing my head on the wall. I don't judge anyone that has to take them because I know how bad this pain is. Just be aware that you might be treated differently. It's sad because we're the ones that need it for it's original purpose, help with pain, versus the people that take them for fun. Just be very careful with them and honest with yourself so you don't end up in a bad situation a year or 2 down the road.
Sheila,
That is awesome you can get by without taking meds!!!! My pain is 24/7...vomiting and blood pressure raised with pain. I couldn't function even without the meds. So with the meds at least I live a somewhat painfree life. I do choose at times...holidays and special occassions to cut down on meds and live in medium pain so I can enjoy my family more. I feel blessed there are meds to help us. Thank God the "suicide days" are gone for most of us because we know meds that can help...noarcotics or otherwise.
Pain meds don't do jack if taken alone for TN. I might as well be drinking water, LOLOL. You need to TN meds to control it.
Everyone please be careful of making a blanket comment on medications, or promoting the use of medications. I know the pain of tn is awful I my self am having a rough day with it. Each of us act differently to medications, and I truly believe that opioids should have consideration of use. Perhaps this is a topic that should be continued in the opioid sub group then here if you would like more information or have questions on this drug class.
Wow, Yvonne... I was just about to post a question here if anyone else experiences vomiting and racing heart beat when the pain is severe. I see you have the same experience, even though my doctor told me it was nonsense! It has become abundantly clear to me that my doctor has decided my problems are all mental. I had a MVD about 2 years ago which helped for months... then the pain came back. I'm only taking an antidepressant now, used to take Neurontin but it quit helping. I tried to tell her about this website and the great information here, but she told me she has over 2000 patients so she doesn't have time. Okay... so I asked for a referral to a neurologist. She referred me to a nurse practitioner who does headache clinics about 45 miles from where I live. I declined, so "obviously" I must be a drug-seeking hypochondriac. I have NEVER asked for pain meds!!! I have an HMO, so I am pretty much stuck with her (and she's considered to be top-notch for our area). I guess I'll live with this until I can't anymore.
Yvonne said:
Sheila,
That is awesome you can get by without taking meds!!!! My pain is 24/7...vomiting and blood pressure raised with pain. I couldn't function even without the meds. So with the meds at least I live a somewhat painfree life. I do choose at times...holidays and special occassions to cut down on meds and live in medium pain so I can enjoy my family more. I feel blessed there are meds to help us. Thank God the "suicide days" are gone for most of us because we know meds that can help...noarcotics or otherwise.
Suzanne,
I am so sorry you have those symptoms. The first time I had a severe attack and went to ER...I feared I was dying! It was really scary. Thank goodness the meds help. Sometimes, I think highly rated doctors aren't the best option. My husband goes to one and he has trouble getting an appt and he is not thorough enough because he is overwhelmed. It sounds like your doctor might be getting burned out also (due to her statement about 2000 patients.) I really encourage you to look for another doctor. My doctor is wonderful. He listens to me and when I tell him about this support group, he asks me what is helping others. He is willing to do anything that will help me. I hope you find someone who listens and helps you. This condition is bad enough w/o support from our doctors! Hope you have a painfree weekend. Yvonne
Suzanne Marriott said:
Wow, Yvonne... I was just about to post a question here if anyone else experiences vomiting and racing heart beat when the pain is severe. I see you have the same experience, even though my doctor told me it was nonsense! It has become abundantly clear to me that my doctor has decided my problems are all mental. I had a MVD about 2 years ago which helped for months... then the pain came back. I'm only taking an antidepressant now, used to take Neurontin but it quit helping. I tried to tell her about this website and the great information here, but she told me she has over 2000 patients so she doesn't have time. Okay... so I asked for a referral to a neurologist. She referred me to a nurse practitioner who does headache clinics about 45 miles from where I live. I declined, so "obviously" I must be a drug-seeking hypochondriac. I have NEVER asked for pain meds!!! I have an HMO, so I am pretty much stuck with her (and she's considered to be top-notch for our area). I guess I'll live with this until I can't anymore.
Yvonne said:Sheila,
That is awesome you can get by without taking meds!!!! My pain is 24/7...vomiting and blood pressure raised with pain. I couldn't function even without the meds. So with the meds at least I live a somewhat painfree life. I do choose at times...holidays and special occassions to cut down on meds and live in medium pain so I can enjoy my family more. I feel blessed there are meds to help us. Thank God the "suicide days" are gone for most of us because we know meds that can help...noarcotics or otherwise.
Hi Kari,
You are right...there is nothing blanket about this condition. What works for one, doesn't for another. We all need to support and encourage one another to do what is best for our own lives, health and families! Hope you have a painfree weekend! Yvonne
Kari said:
Everyone please be careful of making a blanket comment on medications, or promoting the use of medications. I know the pain of tn is awful I my self am having a rough day with it. Each of us act differently to medications, and I truly believe that opioids should have consideration of use. Perhaps this is a topic that should be continued in the opioid sub group then here if you would like more information or have questions on this drug class.
I was on opiate pain pills (Vicodin, Percocet) most of the time in the several years before I was diagnosed. When I would go into the emergency room they would give me morphine. It never helped the pain one bit, but it did make me feel "distant" from it because I was high.
When I was diagnosed and getting ready to start anti-convulsants I asked my neurologist and (later) an emergency room doctor about it. Both told me that one of the classic signs of TN (as compared to other types of facial pain) was the fact that opiates don't work and can make the pain worse over time. That's part of how they made the diagnosis back then.
Nowadays with the new guidelines that determine what is TN the issue is probably cloudier. A lot of people with what we consider TN today would have had some other pain syndrome when doctors were in med school ten years ago. It will take time to get them all caught up on the fact that the very narrow definition has expanded to include a wider range of symptoms and responses to various medications.