I just started taking Lyrica for this pain. If it worked for anyone, how long before you noticed relief. Was it immediate? I'm on 100mg 3x a day and have only taken two days. Did it help for anyone immediately?
Have been taking it for going on two months. It seems to be helping me. It took at least a month before I really felt any difference. This is the first medication I have tried that did not have any severe side effects, and I have been on a lot of them in the past 6 or 7 months. That said, I am just entering one of my “seasons” so I will wait till the end of the year to judge how effective it really is. You have started on a really high dosage. My initial dose was 100 mg a day, I am currently on 150 mg a day.
Yes, I'm seeing a ENT at the moment until I can get into a neurologist. The pain is horrible and constant. It is in my jaw, ear, throat and tongue. I have found no relief from Neurotin and now on Lyrica. Is your pain constant? My pain is not electric feeling in anyway. It's just a throbbing terrible ache. It started on the right side, but I am now having pain on the left as well.
Can you describe your pain? I have been so fearful I have some kind of throat cancer.
Lyrica helped the lightning strikes for me after about a week or two, but the more a-typical pain, (boring ear, teeth) it didnt do squat for.
If your symptoms are mostly lightning strikes, give it time, it worked well for me in that respect.
Wendy
I experience both the shocking jolts and the constant but moving stabbing/ache type pain. When it gets going it can last for days on end. Just had a 36 hour flare up last week, and the shocks were very muted, almost not there. And the constant pain like you described was also not as bad as it has been. As I said though, with this desease I wont call anything a trend until at least 6 months, until I run through one of my “seasons”.
Wellington, I almost had a lymph node removed plus other biopsies because my ENT was sure I had cancer. I went to a head/neck cancer specialist and she said something that was very helpful: if it was cancer, the lymph node will not go down it will keep swelling and same with my tonsils/throat. In other words, mine is completely the TN. Hopefully that is the case for you too!
I couldn't make it past two weeks with Lyrica, even at a low dose. I did feel a bit of pain relief, but the confusion, almost fainting, dizziness was too much to function even just around the house. I hope it works for you, I've read about great success for a number of people on here.
Pam
Crashgirl, is your atypical pain extremely painful and is it daily? My jaw, and earache are quite painful and last all day long. I have had this now for months with tongue and throat pain and I’m getting no relief whatsoever. Describe your pain if you don’t mind. I know everyone is different. I have no lightening strikes whatsoever. I just have terrible ache in neck, ear, jaw, throat and tongue. Ouch! Need help.
i was very scepictal of lycrica but i was in so much pain i finally said ok,that was almost 5months ago and i can honstely say it has been the best thing in 20 yrs. that has helped with the terrible pressure in my eye and i started st 100 mgs. aday which wasn't good enough for my eye pain so i have been at 200 mgs. aday for about 4 months that has been one of the meds. that i couldn't get by without it. i hope you find relife soon ! i know no one med. works for everyone God bless you in your journey! hugs, dawn
Pam,
What were your symptoms? Was your pain daily as well? I just can’t imagine anything this painful be just a nerve. I don’t have lightening strikes, so I’m not sure I have TN. I sure hope it is and not cancer. It’s so painful. I have no problems eating or bushing my teeth as others as mentioned. How did your neuralgia start?
i still have all the schocking pain along with the burning, boring throbbing pain .mydr. said i was maxed out at 200 mgs. a day. i guess all drs. are so different. i am also on amptripaline 150 mgs.. aday which helps with the burning, boring ect. pain but nothing helps me with the breakthur pain! except 3 mgs. of klonapin how that helps i don't know but as long as it does help i will leave well enough alone. wishing you pain free days! my tn has been terrible since we here in mi. have went from 90 derees for over 10 days now it feel like snow ! good luck to you. dawn
I've had TN since 2007, had 2 MVDs and tried most TN drugs. My pain has changed. It is now throbbing with zaps of pain going along the nerve in all three branches and it is constant, getting worse as the day goes on. My sinuses, lymph nodes and tonsils give me problems/swelling pain at times, not all the time. Not sure how mine started, I first felt pain after dental work & thought it was an infection; my dentist figured out it was TN.
I have bilateral ATN. I have had the burning boring pain in my right scalp, and a feeling of pressure in my teethe and face intermittently for close to 10 years. It was not until it became relentless, and was accompanied by the lightning strikes in my face in December 2011 that I sought a diagnosis. I am allergic to Tegretol, and maxed out on Gabapentin in October 2012.i tried adding Lyrica, but it did not help.i started getting the same pain on my left side in October 2012. I underwent MVD with a top NS in January 2013. Although it helped tremendously with the shocks, the burning boring pain never went away. I returned to my surgeon in July , and it was recommended that I get a peripheral nerve stimulator implanted on my right side to control the pain. I had that procedure three weeks ago, and I am happy to say it has been wonderful. My right side pain is gone 90% of the time, and I would recommend it to those of you that have continuous pain despite and MVD.
Best of luck to you!
Lilliacatnap,
When you almost had biopsies done, what were your symptoms then at that moment to make the ENT want to biopsy?
Liliacatnap said:
I've had TN since 2007, had 2 MVDs and tried most TN drugs. My pain has changed. It is now throbbing with zaps of pain going along the nerve in all three branches and it is constant, getting worse as the day goes on. My sinuses, lymph nodes and tonsils give me problems/swelling pain at times, not all the time. Not sure how mine started, I first felt pain after dental work & thought it was an infection; my dentist figured out it was TN.
I was having recurring throat/lymph node/tonsil swelling, mouth & tonsil ulcers and infections plus I smoke. The doc also did a CT scan that came back normal. I think she is first a surgeon, second an ENT. She was not familiar with TN or fibromyalgia (which I have) at all & did not stop to find out about them or consider how either of those might be affecting me. I think she simply wasn't a very good doc.
Are your symptoms similar? Is your ENT thinking about biopsies?
It helps make my pain more manageable -- more of the day without pain, lowers the level somewhat (e.g. 4 instead of a constant 8 every afternoon). Taking it in combination with other meds (desipramine or a second anticonvulsant) helped even more, but had bad side effects. Lyrica makes me sleepy/stupid, and my friends and family have told me that I have less spark when I'm taking it. But overall, so much better for me than everything else I've tried (I think I've tried everything), and without it I am pretty much housebound most days.
It was a year ago that I started taking it so it's hard to remember. But as i recall it was less than a week and it worked for me for a year or more. i was able to cut the initial dosage in half for most of the year. Then one day it stopped working--a week after I change a med i was taking for enlarged prostate. i kept taking more Lyrica until I was at 4X the dosage & it made no difference. But i've read that happening to others regardless of the med. Overall, i was very happy with the results.
I'm a couple of months pain-free and off all meds now after going on an anti-inflamation diet.
Good luck! Hang in there. i know how awful it is.
Ted
When I increased my Lyrica from 200mg to 300mg daily, I finally noticed a difference in the severity of my TN1 pain. But it was a gradual difference--over 2 to 3 weeks, I would say. As I mentioned, I had TN1 so my case is different (as we all are) from yours. I was 68 yrs. old at the time, also. Even though the Lyrica helped me deal with the pain, I knew it was just a "band aid" for the condition. After being on Lyrica for nearly a year, I choose to have an MVD. I had the surgery last October and have been pain free and off all medications. I am so grateful to have my life back.
I wish you strength.
Dixie
I can’t remember sorry. I’ve been on it for a bit. What I can tell you is this a medication that usually takes awhile to build up in your body to take affect. Hope you get relief soon.
Wellington90 have you been checked to see if you might have Glossopharyngeal Neuralgia. This affects the tonsils, throat, tongue and ear in the same way as TN. I have atypical TN alongside the GN. Not much fun. Neurontin helps somewhat but I get more relief from Accupuncture and essential oils.
wellington90 said:
Crashgirl, is your atypical pain extremely painful and is it daily? My jaw, and earache are quite painful and last all day long. I have had this now for months with tongue and throat pain and I'm getting no relief whatsoever. Describe your pain if you don't mind. I know everyone is different. I have no lightening strikes whatsoever. I just have terrible ache in neck, ear, jaw, throat and tongue. Ouch! Need help.