I'm just wondering - what do you do when your meds don't work? Three weeks ago I was prescribed Neurontin, 500mg/day and Doreta (Tramadol+Paracetamol combination) in case I need it, neither of which worked all that well. I went to see a neurologist this week because my pain has recently progressed, I told her that the pills don't work. Got a shot of mesocain (I suppose it's something like lidocaine) into my chin, which worked temporarily for my chin sensitivity but didn't do anything about the pain in my teeth. I also got upped to 900mg of Neurontin, which I've been taking for 4 days now - no improvement in my pain level. I truly dislike the fatigue that the pills give me and can't really see how people can function on higher doses, it must be so hard! I have another appointment on Monday and wonder if I should refuse if my neurologist offers to up my dose again. The neuro I saw on Wednesday said there are not many options to treat ATN and out of the medication on the market Neurontin comes out as the best solution. Does it mean I should settle for that even though I haven't had much relief from it so far? Also, would it be wise to ask for an MRI refferal (I really want to see what's going on in my jaw and those teeth that keep bothering me but not sure if MRI would show any anomalies in that part of the face). Thank you for your advice. Oldriska
Poor you, 900 mg is still a low dose and you are finding that difficult, you must have a low tolerance. I take 2700mg with little side effect and it does work for me very well. I feel for you and hope you can work something out with your neuro to help you. It is the Tramadol which would cause me problems!
Thank you, Jackie. I'm very happy for you that the Neurontin works well for you! I'm sure I'll work something out eventually - at least I hope I will - maybe I'll ask my neuro about the tricyclic antidepressants which some people mentioned work ok for ATN. I don't like being on pills and my body is totally unused to them...I used to be very healthy and doing yoga 6 days/week...now I have days when I can barely walk to and from work ,I'm just tired of pain, pills and the depression that comes with this condition. Oh well, I'll just have to come to terms with the "new me", I guess. Thanks again and have a nice evening. Oldriska
Jackie said:
Poor you, 900 mg is still a low dose and you are finding that difficult, you must have a low tolerance. I take 2700mg with little side effect and it does work for me very well. I feel for you and hope you can work something out with your neuro to help you. It is the Tramadol which would cause me problems!
Hello I too have been playing the meds combo game and just have not quite tried two meds at once. I have done Gamapentin Lyrica Indocin (awful stomach side effects) and now we are starting Topamax? tonight ... Just wanted to say this TN kicks your behind I don't want to smile or do anything to set it off; brushing my teeth use to be something I took my time and enjoyed but now I dread it but oh yes I still do brush my teeth...This site is helpful especially when you are faced with a new obstacle in your life...on how to deal adjust etc. I really have nothing as yet to add I take Fioricette for pain but honestly its not helping me. Between electric shocks and dull ache well you all have dealt with it to one extreme or another. Just wanted to say thanks for taking the time for all of us just experiencing this phenomena well thats what I call it anyway. Much love and hope for all that suffer with this and plz keep writing..Oh btw will be seeing another Neuro guy at Georgetown soon I know he is a surgeon but I have way too many questions to even consider that yet. I also have nausea with the pain? anyone else experience that also ... just curious...take care...Mina
It takes time for the side effects to lessen but if you are really sensitive then try something else. I started on trileptal and slowly went up. The side effects were bad but are slowly getting better.
the tricyclics have their own problems so read up on them. So far I haven't seen any drug that doesn't have side effects that make your life difficult. Perhaps it's time to talk to a neurosurgeon about MVD? I know that when the meds stop working for me that will be my next step.
For some people, myself included, the Tramadol won't help the pain of a skinned knee, and it just gave me constipation. Some people find relief from it. (no pun intended)
I can only tell you there is oral Lidocaine RX and Lidocaine patches and cream topical that helped me with breakthrough pain.
Have you got the book "Striking Back" by Dr. Ken Casey yet?
He was my surgeon - and there is 200+ different ideas for pain in it --- natural, meds, procedures -- I read it then came here to confirm, poll, research before I made my decision to ditch the meds effect on my IQ and go for the MVD.
Keep Posting!
Actually -- I haven't tried much --- got mostly fixed within 18 months Total --- but it could always come back ---- I saw a Reiki person and she cleared my pain for 3 weeks.
Thank you all for your replies. As much as I don't like taking the pills I think I'll stick with them for the time being unless my neuro things otherwise. Maybe it is too early to judge their effectiveness after only 3 weeks or so. I'll also try to look into natural remedies, maybe will give MSM a go as it's said to lessen pain. Thanks again and hope everyone is doing well today!
I have a terrible time with nausea. When the pain gets very bad, I am usually throwing up. I have always taken Phenergan for it. It makes me sooo sleepy. They tried another that they give to chemo patients and it did not work at all. I have been given Tigan recently to manage it without falling asleep. They just upped the mg on one of my meds which increases nausea. So I take Tigan for the mild nausea and switch to the Phenergan when it becomes severe. I was starting to have some success in pain management on my newest med combo. Talking with my neuro I decided to eat Tigan every day to deal with the nausea rather than the pain. I hope this new combo works!
Mina said:
Hello I too have been playing the meds combo game and just have not quite tried two meds at once. I have done Gamapentin Lyrica Indocin (awful stomach side effects) and now we are starting Topamax? tonight ... Just wanted to say this TN kicks your behind I don't want to smile or do anything to set it off; brushing my teeth use to be something I took my time and enjoyed but now I dread it but oh yes I still do brush my teeth...This site is helpful especially when you are faced with a new obstacle in your life...on how to deal adjust etc. I really have nothing as yet to add I take Fioricette for pain but honestly its not helping me. Between electric shocks and dull ache well you all have dealt with it to one extreme or another. Just wanted to say thanks for taking the time for all of us just experiencing this phenomena well thats what I call it anyway. Much love and hope for all that suffer with this and plz keep writing..Oh btw will be seeing another Neuro guy at Georgetown soon I know he is a surgeon but I have way too many questions to even consider that yet. I also have nausea with the pain? anyone else experience that also ... just curious...take care...Mina
Mina, I get nausea with any severe pain. You are not the only one. I end up vomiting with severe headaches, tooth aches (if that's what they were) and even menstrual cramps. It's not uncommon at all.
Dana Nelson McCullah said:
I have a terrible time with nausea. When the pain gets very bad, I am usually throwing up. I have always taken Phenergan for it. It makes me sooo sleepy. They tried another that they give to chemo patients and it did not work at all. I have been given Tigan recently to manage it without falling asleep. They just upped the mg on one of my meds which increases nausea. So I take Tigan for the mild nausea and switch to the Phenergan when it becomes severe. I was starting to have some success in pain management on my newest med combo. Talking with my neuro I decided to eat Tigan every day to deal with the nausea rather than the pain. I hope this new combo works!
Mina said:
Hello I too have been playing the meds combo game and just have not quite tried two meds at once. I have done Gamapentin Lyrica Indocin (awful stomach side effects) and now we are starting Topamax? tonight ... Just wanted to say this TN kicks your behind I don't want to smile or do anything to set it off; brushing my teeth use to be something I took my time and enjoyed but now I dread it but oh yes I still do brush my teeth...This site is helpful especially when you are faced with a new obstacle in your life...on how to deal adjust etc. I really have nothing as yet to add I take Fioricette for pain but honestly its not helping me. Between electric shocks and dull ache well you all have dealt with it to one extreme or another. Just wanted to say thanks for taking the time for all of us just experiencing this phenomena well thats what I call it anyway. Much love and hope for all that suffer with this and plz keep writing..Oh btw will be seeing another Neuro guy at Georgetown soon I know he is a surgeon but I have way too many questions to even consider that yet. I also have nausea with the pain? anyone else experience that also ... just curious...take care...Mina
MSM is a type of sulphur - it used to be given to race horses in the past for joint injuries to heal quicker and to give the horses shiny coats:) Now it's also used as a food supplement (you'll likely find it as a part of supplements for joint health) - it is said to improve inflammation and help with other issues as well. I've ordered some online, it's cheap; I'm hoping it could help wiht my chronic inflammation of jaw joints too, but haven't tried it yet so can't really say if it works.