Hi Gizmo, interesting, probably not tmj which I have had a little issue with docs thinking it was flaring up again and I too have pain and burning in the roof of my mouth....I hope this clinic can find out the root cause, good luck to you and keep posting. Sharon
Thanks Sharon
Granny said:
Hi Gizmo, interesting, probably not tmj which I have had a little issue with docs thinking it was flaring up again and I too have pain and burning in the roof of my mouth....I hope this clinic can find out the root cause, good luck to you and keep posting. Sharon
Bump!
This piece was so helpful to me this weekend. After 6 months of constant (ATN?) pain, I was finally put on Lyrica - which, while it didn't completely relieve the pain - gave me my life back! I had three great weeks on Lyrica - but, the past 7 days have been discouraging to me - the pain is breaking through more forcefully, and very consistently. I go back to the Internist's office Tuesday morning, in hopes that he can help me manage this. I'm so, so tired of the pain - and all that it takes from me, from my family. Your article was so hopeful. It was just really good for my hear.t Thank you, Mimi.
Molly
Thank you for this thread. Since my husband started having TN pain I have been reading so much. I feel like I have bounced around to every possible website. There is so much to read yet I feel like it's not enough. In this website and this thread I have read so much that makes me feel positive about the possibility of my husband getting back to normal again or atleast a new normal.
To Mom of 3, sorry the lyrica is loosing it's effect, I myself was tried on it and initially it helps but then wanes, next came cymbalta, no effect, then tegretrol, same thing as lyrica, but all these meds caused severe side effects right about the time they started to wane. Not sure why, can't increase because of side effects, so now I am trying baclofen, they are upping it slowly because of all the side effects I seem to get from drugs. If you are not having side effects your doc may be able to elevate the dosage. Good luck to you, Sharon
Thank you, "Granny". I really appreciate you reaching out. Feels so good to be in contact with people who understand this. The left side of my tongue hurts and I'm ready for relief!
You’re so welcome Mom of 3, hope your appointment goes well tomorrow!
I sometimes find a Popsicle relieves the pain I feel on the side of my tongue…
It can be a dance finding the right med(s). My best advice at ths point is to ask the doc how to manage the pain and possibly increase the med at home over time.
Thinking of you, Mimi xx
(((( peeples )))),
There is ALWAYS hope! I know it’s hard, and there’s so much info out there that can be discouraging. But have faith!
Take good care, Mimi xx
Mimi, I've brought the dose of Lyrica up twice in the past 7 days (now at 250 mg) and I'm still struggling with constant pain at levels that keep me from really LIVING, you know? Is that common? I guess I expected to finally be at the end of all of this. The first two weeks on Lyrica, the pain was so "quiet" finally - I could barely "hear" it. I thought that would last. ANA and other blood lab results come in this afternoon - I'm hoping for some more information from those results. I still don't have a TN2 diagnosis - or any other diagnosis. It's been 7 months of unrelenting pain and I just don't know what to do. The Lyrica has me spilling coffee on the carpet, dropping dishes, dropping cartons of eggs... crazy how clumsy I've become! And, I just don't feel like myself really. And, I just want to get to a place where I can feel alive again - and trust that will last. Does any of this sound familiar?
Hi Mom of 3,
I think you should start up a new discussion regarding Lyrica, I’ve never been on it, Many others here have and might offer good advice.
Why haven’t “they” given you a diagnosis yet?? Have you suggested TN/ATN?
From someone who is in constant horrid pain, I can sympathize …its ridiculous!
If you haven’t already done so, you need to call your doctor ASAP and tell them you are in a pain crisis, you need help today!! Whether that means an increase in the lyrica or a new med.
Something needs to be done!
These meds we all take have side effects, when you’re on low doses and your body adjusts, most of these side effects will dissipate. It takes time though , everytime you increase the
med(s), you can expect those to re-occur, your body will need to adjust again.
I can totally relate and understand. Of course we all react differently and have unique journeys with TN, one thing we all have to have is faith and hope. Patience initially to find our sweet spot with the meds, this can take up to 4 months or so, sometimes sooner, sometimes later.
You need to find someone (doc or neuro) willing to help you, first and foremost.
Thinking of you, Mimi xx
Ps. I’m not myself lately, so if what I wrote doesn’t make sense I’m sorry…too many meds and too much pain… Message me if you need.
Actually, Mimi, I think you wrote with great clarity and elegance and I agree with your post.
Mom of three, I will add: when you find yourself doing things like dropping and spilling, go easy on yourself. You can try saying quietly in your head, it’s okay, I just spilled, I just dropped, it’s okay.
You are altered, but you are alive. It’s a hard adjustment until, as Mimi says, you find your sweet spot.
Thank you, both - SO much. I think I'd be better able to accept the side effects if I wasn't still dealing with constant pain. I don't really think my current dr. knows what to do with the pain. I don't know what to ask him to add to the Lyrica. He says he's "perplexed". I'm in Alaska - so there aren't a lot of dr's to choose from. My thought has been that this is TN2 - but, who knows! He prescribed "sprix" (a nasal NSAID). But, I never filled it... I can see taking it for a severe 'episode' of pain. But, my pain is just a constant noise, always always there. My family's resources aren't unlimited. But, if there was a dr. in the lower 48 states who could certainly diagnose and successfully treat my pain, whatever it is, I think we'd jump on a plane and foot that bill in a heartbeat. But, not knowing exactly WHAT this is makes it harder to FIND the right dr. to travel for. Does anyone know of a dr. out there who can diagnose and treat TN-2, if it's that - but (just in case) could diagnose and treat other disorders that manifest themselves in the same manner?
If you can make two hours to watch the video below, it will answer a lot of your questions. Being in a state of “not knowing” adds fear to the pain situation and in my experience, makes it worse. This video really addresses Type 2TN. It is also a good guide for choosing a doctor and not sticking with someone who is “perplexed”. I understand how frustrating that is and it certainly does not help. In fact it can be harmful.
Keeping a pain journal with little diagrams is also useful.
I live in coastal British Columbia so can’t help you out with doctors. But I really urge you to watch the video.
Bella
http://www.livingwithtn.org/video/ask-the-doctor-series-with-ken
Thank you Bella…my brain is not functioning well, had to increase meds…so I re-read it a few times and it didn’t make sense to me! LoL
Mom of 3, it might be helpful to print off the TN info ( located on the main page) and share it with your doctor, tell him you see a lot of similarities and then ask his opinion.
I urge you to post a separate discussion on the main page…we’re both in Canada, you might get some solid advice there. Not just on doctors but on the lyrica as well.
I feel for your brain, Mimi! And hope the meds ease your pain to something tolerable.
I am five days into adding Tripleptal to gabapentin with a hit of tramadol in the late afternoon and am not sure of “steerage” at times too, but I keep moving, slowly, deliberately. Operating on two grooves, the pain groove and the “what do I do next” groove. Good thing there is spell check! Although auto- corrections slip past…
Mom of 3, lyrica didn’t do anything for me but other things have. There is help.
Hello mom of 3, your recent discussions I have read. I was a young mother suffering from chronic pain, tmj then but also this atypical TN type 2 facial pain. I do understand where you are, do get the rest you need, take a nap or rest when the children are napping or out to school. I am a grandmother now, and once again this facial pain has resurfaced, almost 20 years of remission, it has interrupted the time I love to spend with my grandchildren.
Take care of yourself, I know you will always want to bring the needs of those children first, but do take the time to take care of yourself. If you responded to the lyrica initially but are now dealing with side effects, try other combinations of lower dosages of different meds, less side effects, I can't take any of the drugs because of side effects. I do better on low dosages of combinations, like gabapentin and baclofen. I can't reach the theraputic dosage levels for these anit-convulsants because of side effects. I am still in constant pain, some hours of the day are better. And I am also taking a narcotic, low dosage of percocet, I have severe ear-jaw pain with the face pain, and it helps. Heat and ear drops help too. Now you would not want to be on a narcotic because of the children, but a good pain management doctor will make sure the dosage you are on does not interfere with your motor skills or cognitive functions. I get tested for motor skill function on every visit.
I drop these all the time too, don't worry about a little spilled milk. I think you are brave and courageous. I wish you the very best and hope you find a good neuro somewhere where you are. You have this site and lots of good info to offer to your primary, educate your doc on some to meds being used. I am trying botox injections because my neck muscles are involved, he is doing them in the scalp, a fairly new approach to facial pain, not sure if you have that available, I have had mixed results so I wouldn't rush to look for someone. He is new to this approach and has not figured out how much and how many injections at what site, I read about someone who gets over 20 injections, he is not doing that for me yet. If I ever get a great result as he learns I will let all of you know.
Getting a dx is hard. There are so many different types of type 2 and various types of neuralgia related to TN. Not all of us are typical TN. Not me anyway but still getting an MRI this month. Just because we are not typical TN doesn't mean there isn't some surgical intervention that can help. I am being cautious on that approach. Choosing only the doctors recommended on this site to go to.
Wish you had more resources from where you live. Stay strong, my children grew up with a mother in chronic pain and overall they were affected and yet still came out fine. I have so many little cards from my daughter always saying "rest mommy, I hope you feel better today", and I did, cooked good meals, tucked my daughter in with her favorite song every night, made it to all their sports or drama functions, so look at your day and always reflect on what you did do, not what you couldn't do and you will find you will be easier on yourself. And the next day will be what it is, some days you may not be able to come through but you will next day. Sharon
Mom of 3, To find a doctor in the lower 48 who understands facial pain, you can start with recommendations from other members, which I have assembled in our "Find a Doctor" page, under the Doctors tab of our site menus.
Regards and best
Red
Thank you all. I'm watching the video as time allows - very informative.
Now at 300 mg Lyrica. So far, the pain seems a LITTLE bit quieter today. Molars are still throbbing. There was some pain at the side of my head for a while. But, I feel sluggish and foggy and blah. I just want to get back to life, laughing with my family, being productive around the house, feeling good enough to make plans and see friends. I know you all understand this. I get tired of well-meaning friends asking me, "have you seen a chiropractor".
Good to hear you’ve found some relief.
And yeah, it can be a drag well meaning friends treating your illness like a petting zoo of favourite remedies…smile when it doesn’t hurt:) at least chuckle inwardly at my mixed metaphor.
Ha! Indeed. Thank you, Bellalarke - I get so excited whenever I see that someone who has BEEN THROUGH THIS has replied to something I wrote today. THANK YOU for that.