I am reaching out to see if anyone has had any success with this diagnosis- what has worked for you to relieve pain? Thank you. I am meeting with a NeuroSurgeon on Monday a 5 hour drive away and would like to know any help anyone has received with this type of pain
Thank you in advance for any help
People with whom I've talked have reported that for this class of diagnoses, the meds that tended to work best for them were poly-therapies which included a tri-cyclic antidepressant drug as one component (amitriptylene and others in the same class). By "polytherapy" I mean a combination of two or more drugs, perhaps including Lyrica, Tegretol, Neurontin, Baclofen, tranquilizers and NSAIDS drugs like Naproxen Sodium. Not all at the same time, but a combination or "cocktail" arrived at by trial and error.
Thank you- I have tried Lyrica, Tegretol, Neurontin, now trying Tramadol- but none with anything else just each of those meds alone, and have gotten absolutely no pain relief whatsoever, my pain is a constant burning pain in my lower left jaw,gum area, it is a pain that never stops only goes up and down in pain level from 3 to 10 during the day and evening I have no pain while sleeping, but I never get any relief from the pain while awake it is always a constant pain at some level. I will continue my quest to find something that will solve this pain.
I agree with Red.
My diagnosis is Trigeminal Neuropathic Pain and I take amitriptyline, and it has helped lower my pain levels a lot. It's the most success I've had with any med.
Hi, I noticed you posted this on someones blog " dental work"
"This is exactly how mine started 4/2009 with a root canal, after root canal pain in jaw then two more root canals on same tooth and finally tooth extracted and pain never stopped two years and 2 months later still in horrible pain going to a neurosurgeon 4 hours away June 27th otherwise I have not had anything pain meds etc that have given me any relief, they call mine Trigeminal Neuropathy"
I am dental damaged too. you do have a form of TN but its one of these 2 nerves that have been involved..
Mental nerve - Wikipedia, the free encyclopedia
Inferior alveolar nerve - Wikipedia, the free encyclopedia
the burning is dysesthesia...
what was used in your root canal? Sargenti Opposition Society
I hope thats an oral jaw neuro you are seeing soon?
Thank you- I have tried Lyrica, Tegretol, Neurontin, now trying Tramadol- but none with anything else just each of those meds alone, and have gotten absolutely no pain relief whatsoever, my pain is a constant burning pain in my lower left jaw,gum area, it is a pain that never stops only goes up and down in pain level from 3 to 10 during the day and evening I have no pain while sleeping, but I never get any relief from the pain while awake it is always a constant pain at some level. I will continue my quest to find something that will solve this pain.
Thank you for your response, as I met with the Neurosurgeon Monday ( the 5 hr away drive one) in hopes of getting help, he suggested amitriptyline, and wrote a prescription, so I am going to give it a try---- I know every one reacts differently just wondered how you worked up to it, and any side effects. Also as a note, he suggested if this med doesn't work for me, he referred me to a local anesthesiologist for nerve blocks, and as a third resort if these two things do not work, a surgery that implant neurotransmitters for pain.... thank you for your response as I had this information you had shared with me with I got there so was encouraged that he suggested something I had not tried and that had worked for you, thank you again, not sure you know how much that helped.
Kathy
crystalv said:
I agree with Red.
My diagnosis is Trigeminal Neuropathic Pain and I take amitriptyline, and it has helped lower my pain levels a lot. It's the most success I've had with any med.
To read up on medication side effects, there are a number of authoritative on-line resources. One of the better ones is http://www.rxlist.com. I intend to add this reference to the Help with Research tab here at LwTN, in the near future.
Regards all,
Red
Thank you so much, looks like the reviews were helpful, and not a scary as I thought, I have tried so many different meds, sometimes you just feel like giving up, side effects really effect me bad, I always have periods of anxiety and sadness when they do not work, I think posting the link to the Help withResearch will be so helpful!
Thank you again!
Richard A. "Red" Lawhern said:
To read up on medication side effects, there are a number of authoritative on-line resources. One of the better ones is http://www.rxlist.com. I intend to add this reference to the Help with Research tab here at LwTN, in the near future.
Regards all,
Red
kwebster,
Please keep us posted on how the amitriptyline works for you. What dose are you taking? I didn't see significant relief until I was on 100mgs a day, but it took a while to get to that dose. I started at 10mg, and then we kept increasing it over a couple months. So please don't give up on it too soon. I really hope it helps you.
sounds the same going to start on 10 and go up to 100 - I'm totally not going to have the patience to let this work-thank you again for your encouragement, now i know to give it time if it didnt work right away I probably would have given up I am so frustrated and don't want a pill that makes me not me-I just want to be me again, and not live in this pain, so I will take your advice and hang in there the neurosuron said to expect to be down for the first three days? I guess I was thinking after three days I would be through the rough spot and on my way to no pain, I guess I am just still holding out for that magic wand. Thanks again you have been such a help to me, and thank you for letting me vent! Sorry----
I started noticing a small difference around 25mg - it was subtle, but the pain was a little less severe some of the time. Each time I upped my dose, the pain became less severe. It was still with me 24/7, but instead of a level 7-8, it became a 6-7, then a 5-6, and so on. Whenever I would make a change in dose, it usually only took me about 7 days to notice it, though they say to wait up to 4 weeks, and everyone is different, blah, blah.
The only side effects that I noticed were sedation (which was welcome since I'm high strung), but also it made it harder to wake up in the morning. This went away as I got used to it. When I got to 100mg I started experiencing the dry mouth I had read everyone complain about. It does suck, particularly because I constantly use my tongue to touch my sore teeth (I have no idea why I feel compelled to do this) and with the dry mouth, it would hurt my tongue to do that. I've been using the Biotene mouthwash and it's helped a lot. And I won't lie, I've gained about 15lbs. But you know what, I'd gain 100 more if it would get rid of the pain. I wonder how much of that is the medication though - I used to be active before I got TNP (Trigeminal Neuropathic Pain), but I've barely left the house since January, so that probably has contributed too.
So, yes, hang in there, and keep in mind that there are many other meds too. It's all about finding the right combo. I also take Klonopin - it really helps with the burning pain and is an anti-anxiety med, so it's a win-win for me.
Oh my gosh! You sound so much like me, I am using the Biotene toothpaste and the mouthwash- but I constantly hit my teeth with my tongue too, and have yet to figure why that is so wild that you do it too! I often wonder why but I think its just our natural reaction to the pain, to stick your tongue there oh boy crazy isn't it. I lost alot of weight during the last two years I spent in dental offices getting root canals, teeth extracted and so many antibiotics for a tooth that they couldn't find anything wrong with which obviously was not my problem....... that I could afford to gain some weight but after the Lyrica run 11 pounds in 11 days, I might be pushin it with another pill that makes me gain! (LOL) Have to laugh otherwise I guess you would just cry all the time. The Neuropathy specialist I went to Monday, referred me to get a nerve block, I'm thinking I might just ty that and avoid the meds, Lord knows I cannot go through another round of side effects, But I'm just pondering that idea, the Tramadol I have has a small dose of morphine in it and keeps me movin but certainly not pain free wouldn't know what that feels like- what's your thoughts, think I should wait and do the nerve block rather than fight through the meds???
What kind of nerve block?
I have not had one done yet. I actually scheduled one once a while back for an early Monday appt, and over the weekend the upped dose of amitriptyline kicked in and my pain levels went down to like 2. It felt so good, but I wasn't sure what to do about the nerve block - if my pain levels were that low, was it still worth getting? I couldn't get a hold of my doctor since it was a weekend so I showed up for the appt anyway, and while in pre-op I told them about the low pain levels, so they called my doctor in and he cancelled it. He felt that since my pain was low and unpredictable at the time, it would be hard to gauge my results. So we didn't do it.
A selective nerve block is indicated to diagnose and/or treat pain that comes from a particular nerve. Please inform us if you are taking any blood thinners, anti-inflammatory medication or have any bleeding tendencies.
After the procedure, you may experience pain relief for a short time. Your pain may come back as the numbing medication wears off. If steroids are administered it may take three to four days for the steroids to begin working and up to two weeks for the full therapeutic effect.
The duration of pain relief from the steroid is variable with each person and is not predictable. You must have a driver the day of the injection because you may experience temporary weakness of the affected limb. Do not take pain medication or use pain patches at least four hours prior to the injection so that a determination can be made about the effectiveness of the injection.
After the injection you will be asked questions as to your perception of the pain relief and possibly be asked to perform those activities that normally aggravate your pain so that the pain relief can be assessed.
The skin overlying the area is prepared with a cleansing solution. The skin is numbed with a local anesthetic. X-ray is used to guide the needle in place. A stimulating needle is then used to locate the nerve root and you may feel a light pulsating down the affected limb. The physician will ask you questions about where you feel this sensation and the success of this test depends on the accuracy of your answers. A numbing medication and possibly a steroid will be injected.
The procedure may be able to determine if your pain is coming from a nerve. There may be a reduction in your pain and if a steroid is administered, this may provide you with long term relief.
Oh my gosh! You sound so much like me, I am using the Biotene toothpaste and the mouthwash- but I constantly hit my teeth with my tongue too, and have yet to figure why that is so wild that you do it too! I often wonder why but I think its just our natural reaction to the pain, to stick your tongue there oh boy crazy isn't it. I lost alot of weight during the last two years I spent in dental offices getting root canals, teeth extracted and so many antibiotics for a tooth that they couldn't find anything wrong with which obviously was not my problem....... that I could afford to gain some weight but after the Lyrica run 11 pounds in 11 days, I might be pushin it with another pill that makes me gain! (LOL) Have to laugh otherwise I guess you would just cry all the time. The Neuropathy specialist I went to Monday, referred me to get a nerve block, I'm thinking I might just ty that and avoid the meds, Lord knows I cannot go through another round of side effects, But I'm just pondering that idea, the Tramadol I have has a small dose of morphine in it and keeps me movin but certainly not pain free wouldn't know what that feels like- what's your thoughts, think I should wait and do the nerve block rather than fight through the meds???
Sorry didn't mean to copy all the information on the page, was just trying to send the nerve block portion, please excuse my error if this is in violation.
kwebster
Based on your "sorry" message, I have removed the doctor-specific information from your post, Mr. Webster. No worries...
Regards, Red
Thank you Red-
kwebster
Richard A. "Red" Lawhern said:
Based on your "sorry" message, I have removed the doctor-specific information from your post, Mr. Webster. No worries...
Regards, Red
the mental nerve is part of the inferior alveolar nerve. the lingual nerve, serving the tongue, is the second nerve affected if one suffers insult to V3.
vesper
kwebster said:
Thank you- I have tried Lyrica, Tegretol, Neurontin, now trying Tramadol- but none with anything else just each of those meds alone, and have gotten absolutely no pain relief whatsoever, my pain is a constant burning pain in my lower left jaw,gum area, it is a pain that never stops only goes up and down in pain level from 3 to 10 during the day and evening I have no pain while sleeping, but I never get any relief from the pain while awake it is always a constant pain at some level. I will continue my quest to find something that will solve this pain.
I do. Im do for blocks by a Dr. Sternberg from Shands facial pain unit. Im on narcotics-fentanyl patch.oxy-breakthrough, valium, muscle.. Thats the best so far. Im looking at pumps. Im on all 3 branches.