I am having trouble speaking without having pains. It makes me stop for a second. It also happens when I eat. I am on 2700mg a day of Gabapentin and 1200 Oxcarbazepine a day. Is there something else I can do to help with this? I have lost enough weight with this. Please if somebody knows of a trick of something to help with this I would be very appreciative.
Thanks
Sandy McGee
If pain in mouth… Lidocaine mouthwash
Face… Lidocaine face patches
Call your GP or neuro… Or dentist… Have them call it in for fast relief!
Sandy,
so sorry to hear that your TN is in crisis mode, but don't lose heart, 15 months ago talking was so painful for me that I could only say a couple of words at a time, but with the help of the drugs, I eventually got my speech pattern back to normal. It's just a matter of trial & error so keep your chin up, you will get there! :-)
I think it is trying to get better but I will see in a few days. I am on gabapentine 3 300mg pills 3x a day and Oxcarbazapine 300mg 2x a day. Hopefully they will start working again for me. a month ago I was doing really good untill about a week and a half ago. What are you on to help with your pain? I am just curious.
Sandy
Deanne1407 said:
Sandy,
so sorry to hear that your TN is in crisis mode, but don't lose heart, 15 months ago talking was so painful for me that I could only say a couple of words at a time, but with the help of the drugs, I eventually got my speech pattern back to normal. It's just a matter of trial & error so keep your chin up, you will get there! :-)
Kc Dancer I do have the Lidocaine viscous 2% Soln mouthwash. I go back to my Nuerologist on the 31 and so I am going to ask about the patches. I will let you know how it goes. Thanks for all the great advice.
Sandy
Kc Dancer Kc said:
If pain in mouth..... Lidocaine mouthwash
Face...... Lidocaine face patches
Call your GP or neuro.... Or dentist..... Have them call it in for fast relief!
Hey Sandy,
I'm on Neurontin 300mg X 2 three times a day, Baclofen 10mg 3 times a day & then I also use Pentazocine 50mg x 2 four or five times a day, Aspirin 300mg X 3 four times a day & Paracetamol 500mg X2 four times a day. It leaves me very spaced out during the day but that's still better than the pain. During a really bad attack, if the pain gets unbearable, I go to the Emergency dept so they can give me an injection of Pethidine too...then I'm really flying!!! :-)
I'm just about to start trying the Lidocaine patches so I'm hoping they help as I had a Lidocaine infusion in April of last year for a spinal injury that was acting up but it actually helped with my TN, much to my amazement as it didn't really do anything for my back pain! :)
Hope you're feelin' better very soon!! :-) <3 xo
Dee
Thanks Dee I hope so too. Can being in a cold room make it act up too?
Well, I've found that it can Sandy, especially if the temperature change is substantial and/or sudden. I've also found that stress can enflame it too, so obviously we have to try to avoid it as much as possible...there are so many things that can set it off, it can be a right nuisance.
Has your doctor given you strong enough analgesics? I've found that adding the Aspirin on top of the Paracetamol & Pentazocine has helped. I was a wee bit worried about taking so many but they are three different types of drugs, it can leave me feeling really spaced out though!:-) Heehee Mind you, my "drunken" state has given rise to plenty of laughs for my husband & two kids! It might be something you could ask your doctor about tho'
Best of luck!
Dee
Dee, I am going to try aspirin but what are paracetamol and pentazocine?
I think that Paracetamol is called Tylenol over there Sandy & as for Pentazocine, I think it might be Naloxone, but I'm not too sure. Got this from Drugs.com:
Pentazocine and naloxone tablets USP contain pentazocine hydrochloride, USP, equivalent to 50 mg base and is a member of the benzazocine series (also known as the benzomorphan series), and naloxone hydrochloride, USP, equivalent to 0.5 mg base.
...so I'm just assuming that Naloxone is the American name for it.
Hope this helps! Let me know how you get on! :-)
Dee xx
Dee I tried the aspirin and it helped a lot. Thanks for the suggestion. Sorry it took so long to get back to you on that, been busy. Thank you again.
Sandy
Glad to hear it Sandy, long may it last!
Dee xx
Sandy, I have the same thing going on! I eat soups and try not to talk very much! This Tn is crazy and I am learning what sets off my pain! Stress really brings on the pain and it is hard to work in a childrens dental center ! I wish I knew the answers ! I will say my prayers for all of us with TN !
Hi
You are in my thoughts and prayers...call your Doctor as soon as you can and get a second look at what is going on with you. I think there can be other interventions
Hey Sandy,
just thought I'd check in to see how your pain levels are doing these days, have you had any relief of late? Thankfully the summer months are on the way so hopefully that should help. Look after yourself & take care,
Dee :-)
Hey Deanne
I am doing really well. I hope I don't jinx myself but I have not really had a pain since the middle of March. I hope it keeps up. I am still on my meds. I think they are the reason that I am doing so well. I still keep a scarf on my forehead just in case since that I where my major pains started. I have been back to work since the middle of March and that has kept me busy. I am glad that I can go to my granddaughter's ball games, I was afraid that I wouldn't be able to go to them this year. The only thing that I can't do anymore is go for my bike rides. I am afraid the breeze from them will set all the pains to go again. I hope this keeps up and I can say that I am I remission if that is what it is called. I hope everyone the best for the summer and coming months.
Sandy McGee
Deanne1407 said:
Hey Sandy,
just thought I'd check in to see how your pain levels are doing these days, have you had any relief of late? Thankfully the summer months are on the way so hopefully that should help. Look after yourself & take care,
Dee :-)
I have a similar problem with talking or really anything i do with my mouth (swallow chew, talk, even just move my tongue). The minute I swallow I get the stabbing nonstop pain for 10-20 seconds. I went to the er for the 1st time last night where they diagnosed me with TN. I have to wait on insurance to go through before i can start treatment. This pain is just horrific! I have had this for about 1 1/2 years and I am now going through a 4th round of pains. The last time months go lasted about 2 weeks. This time seems much more intense and the flare ups of pain almost nonstop. The minute I swallow the pain in my ear starts.This is day 7 but I have no idea how long it will continue. I just pray to God I find the right help soon. Vicodin is doing nothing to get me by in the wait.
How do you adjust to a life where you cannot talk much?
Not too sure if this will work for you, but I have found that Aspirin seems to work better than any of the usual strong painkillers that I take for my back injury...maybe it's because of the anti-inflammatory properties in it. Might be worth a try? :) Best of luck! :)
Dee
gg1960 said:
I have a similar problem with talking or really anything i do with my mouth (swallow chew, talk, even just move my tongue). The minute I swallow I get the stabbing nonstop pain for 10-20 seconds. I went to the er for the 1st time last night where they diagnosed me with TN. I have to wait on insurance to go through before i can start treatment. This pain is just horrific! I have had this for about 1 1/2 years and I am now going through a 4th round of pains. The last time months go lasted about 2 weeks. This time seems much more intense and the flare ups of pain almost nonstop. The minute I swallow the pain in my ear starts.This is day 7 but I have no idea how long it will continue. I just pray to God I find the right help soon. Vicodin is doing nothing to get me by in the wait.
With a few deep breaths & a lot of patience...both yours & your families & friends. You can adjust, just give it a little time. Best of luck! :)
Dee
Jan said:
How do you adjust to a life where you cannot talk much?