Out of the blue (Isn't that how it always happens!?) my cheek started burning and hasn't stopped. I'm not on meds yet and can't get any until Monday (if my neuro returns my call) and I have an appointment Tuesday. What can I do in the meantime? I've tried looking around this website but haven't found anything to help. I've mainly been looking at TN1 cuz I didn't have 2 symptoms. Any advice, help would be appreciated. Any success stories out there? Thanks. Kinda freakin'
Hi Skytapestry,
Sorry that you are going through this. I take it you are new to TN? Many people have symptoms of both Type 1 & 2. I have Type 2 but also have some lightening bolts that come Type1.
You said you are not on any medication yet? What sort of symptoms are you having? Is it all day or does it come in short attacks?
Is there anything you have tried so far to help?
JustJane,
Thanks for responding! I am new to the site and it's been a Godsend. My symptoms started about 6 weeks ago with throbs and occasional shooting pain in my cheeks. Acupuncture seemed to stop the shooting pains. Since then it's been mostly periodic throbs and twitching. A few in the morning, and sometimes I'd have a "flare" in the late afternoon but could sleep it off. At night, after my late afternoon nap I felt great! No issues! And thus has been the pattern for awhile; however, at times my cheek would "feel", no pain, just "feel". Which, of course had me concerned. Today, for no real reason, my cheek started burning, about a 3 on pain, for about 15 minutes. And now the nostril on that side burns a little from time to time. All my other pains/sensations have been a 1 or less, 1.5 at the most. I recently started using capsacian cream, but that takes awhile to work. I have been to a neurologist but haven't rush onto meds because it hasn't been that bad and, I have anxiety already (before TN). I have already decided to start meds on Monday, I've read up about meds in the book Striking Back, but it seems that most info is geared towards type 1. And everything I read seems to indicate that type 2 is harder to treat. I'm just a basketcase, sorry. My friends and family just don't get it. My husband is supportive, but he's not here right now.
Thank you so much for responding! You're an angel!
Hello, I also have type 2 with occasional lightning strikes. Since you can’t get meds until Monday, try warm wet compresses. These worked for me. Cold did not. I wet a hand towel, microwaved it for a few seconds, then put it on my face, of course making sure it wasn’t too hot. This helped for a little while. My neuro put me on Lyrica, and it has made me feel so much better. I hope you have the same results with your meds. One more thing. I also tend to be anxious, and I found myself afraid of the next attack, also worrying about the future, etc. What I have learned in my short time with TN is that I must enjoy the present time and not borrow trouble. When I feel well, I do what I can and enjoy myself. Remember to breathe and relax because stress can make us feel worse. Wishing you all the best.
Thanks Nolagirl.
What is your type II like? Mine is burning, not 24/7, just random attacks. I too suffer from anxiety prior to this, so that doesn't help. I do try and relax, meditate and sleep. Of course now I'm worry this will wake me up...
Thanks.
Peace and pain free wishes
Mine started quickly as a toothache kind of pain. After two dental visits in one day, teeth were normal, then it got excruciating. For nearly two weeks I lay in bed suffering with almost constant pain around an 8 on a 10 scale. Not much sleep. Neurologist could not see me until July 2nd. One day it actually got to a 10. I prayed through it until it subsided a bit, but it was rough. The pain is in my left upper jaw. That is the starting point I think. It radiates out from there. Burning, I say like a cigarette lighter is in my mouth. It has gotten better, though, and my husband’s client got me an appt. last week with a neuro friend who diagnosed me, treated me, and got my MRI. She gave me Lyrica and I am almost pain free. However, they found my left maxillary sinus filled with fluid on the MRI and are now treating that, wondering if that caused the pain. I will keep taking the Lyrica unless someone can convince me that pain was sinus related! I wonder…
I really hope your Dr. Visit goes well! Peace and pain free wishes back to you!
Thanks for getting back to me. You are my bright spot. I am so glad you found a medication that works.
I have wondered about my sinus as well. They didn't say anything when viewing my MRI, but they gave me a copy and it looks like my left sinus cavity is much larger than the right, plus, I have some congestion and drainage. It would be awesome it it's the sinuses and not this disease.
Please keep me posted!
For sure have the sinuses checked as well, because they could be making your pain worse, or even causing it. Hopefully, that will help! I really hope so. Let me know, ok?
I can identify with many aspects of how you describe your pain. For me mornings are pain free and late afternoon is the worst time. And yes the pain does come and go.
My experience with TN is that you need to look into medication, which you are doing. There are certain drugs that can be more effective for Type 2 such as Amitriptyline, Nortriptyline & Lyrica...there are others too. Look under the tab at the top of the page labelled Face Pain Info and scroll down to medication. Some people benefit from using two or more meds together.
So you have pain on both sides? Me too.
Something else that we share is anxiety. I have learnt for myself that stress, anxiety and lack of sleep are my worse triggers. And when I look back my worst flare ups with TN have come during or just after very stressful times.
It sounds like you are taking the right steps to getting a handle on it. Also be sure you have an MRI if you haven't yet.
Skytapestry said:
JustJane,
Thanks for responding! I am new to the site and it's been a Godsend. My symptoms started about 6 weeks ago with throbs and occasional shooting pain in my cheeks. Acupuncture seemed to stop the shooting pains. Since then it's been mostly periodic throbs and twitching. A few in the morning, and sometimes I'd have a "flare" in the late afternoon but could sleep it off. At night, after my late afternoon nap I felt great! No issues! And thus has been the pattern for awhile; however, at times my cheek would "feel", no pain, just "feel". Which, of course had me concerned. Today, for no real reason, my cheek started burning, about a 3 on pain, for about 15 minutes. And now the nostril on that side burns a little from time to time. All my other pains/sensations have been a 1 or less, 1.5 at the most. I recently started using capsacian cream, but that takes awhile to work. I have been to a neurologist but haven't rush onto meds because it hasn't been that bad and, I have anxiety already (before TN). I have already decided to start meds on Monday, I've read up about meds in the book Striking Back, but it seems that most info is geared towards type 1. And everything I read seems to indicate that type 2 is harder to treat. I'm just a basketcase, sorry. My friends and family just don't get it. My husband is supportive, but he's not here right now.
Thank you so much for responding! You're an angel!
Thanks Nolagirl.
I will ask my neuro on Tuesday. It seems to me on my MRI there is possible issue, but I'm not expert.
Nolagirl said:
For sure have the sinuses checked as well, because they could be making your pain worse, or even causing it. Hopefully, that will help! I really hope so. Let me know, ok?
Thanks JustJane37 for all your input. I can't tell you how much I appreciate you answering all my concerns so completely. Your experience seems close to mine, so it helps a lot. I have been researching meds and I figure trilepal will be prescribed for sure, I think in my case an antidepressant would be good too, however, I have a tendency for random heart arrhythmia which is not good for taking antidepressants. I will check with cardiologist. I have had an MRI which came back fine as did blood work.
Thanks again, so much. I feel more positive.
justjane37 said:
I can identify with many aspects of how you describe your pain. For me mornings are pain free and late afternoon is the worst time. And yes the pain does come and go.
My experience with TN is that you need to look into medication, which you are doing. There are certain drugs that can be more effective for Type 2 such as Amitriptyline, Nortriptyline & Lyrica...there are others too. Look under the tab at the top of the page labelled Face Pain Info and scroll down to medication. Some people benefit from using two or more meds together.
So you have pain on both sides? Me too.
Something else that we share is anxiety. I have learnt for myself that stress, anxiety and lack of sleep are my worse triggers. And when I look back my worst flare ups with TN have come during or just after very stressful times.
It sounds like you are taking the right steps to getting a handle on it. Also be sure you have an MRI if you haven't yet.
Skytapestry said:JustJane,
Thanks for responding! I am new to the site and it's been a Godsend. My symptoms started about 6 weeks ago with throbs and occasional shooting pain in my cheeks. Acupuncture seemed to stop the shooting pains. Since then it's been mostly periodic throbs and twitching. A few in the morning, and sometimes I'd have a "flare" in the late afternoon but could sleep it off. At night, after my late afternoon nap I felt great! No issues! And thus has been the pattern for awhile; however, at times my cheek would "feel", no pain, just "feel". Which, of course had me concerned. Today, for no real reason, my cheek started burning, about a 3 on pain, for about 15 minutes. And now the nostril on that side burns a little from time to time. All my other pains/sensations have been a 1 or less, 1.5 at the most. I recently started using capsacian cream, but that takes awhile to work. I have been to a neurologist but haven't rush onto meds because it hasn't been that bad and, I have anxiety already (before TN). I have already decided to start meds on Monday, I've read up about meds in the book Striking Back, but it seems that most info is geared towards type 1. And everything I read seems to indicate that type 2 is harder to treat. I'm just a basketcase, sorry. My friends and family just don't get it. My husband is supportive, but he's not here right now.
Thank you so much for responding! You're an angel!
I'm glad that your MRI was clear. You are on the right track :)
I have been where you are so I know how overwhelming it is. It will take some time to figure out medication but many of us have really good success and are able to live our lives normally.
Keep me up to date.
Skytapestry said:
Thanks JustJane37 for all your input. I can't tell you how much I appreciate you answering all my concerns so completely. Your experience seems close to mine, so it helps a lot. I have been researching meds and I figure trilepal will be prescribed for sure, I think in my case an antidepressant would be good too, however, I have a tendency for random heart arrhythmia which is not good for taking antidepressants. I will check with cardiologist. I have had an MRI which came back fine as did blood work.
Thanks again, so much. I feel more positive.
justjane37 said:I can identify with many aspects of how you describe your pain. For me mornings are pain free and late afternoon is the worst time. And yes the pain does come and go.
My experience with TN is that you need to look into medication, which you are doing. There are certain drugs that can be more effective for Type 2 such as Amitriptyline, Nortriptyline & Lyrica...there are others too. Look under the tab at the top of the page labelled Face Pain Info and scroll down to medication. Some people benefit from using two or more meds together.
So you have pain on both sides? Me too.
Something else that we share is anxiety. I have learnt for myself that stress, anxiety and lack of sleep are my worse triggers. And when I look back my worst flare ups with TN have come during or just after very stressful times.
It sounds like you are taking the right steps to getting a handle on it. Also be sure you have an MRI if you haven't yet.
Skytapestry said:JustJane,
Thanks for responding! I am new to the site and it's been a Godsend. My symptoms started about 6 weeks ago with throbs and occasional shooting pain in my cheeks. Acupuncture seemed to stop the shooting pains. Since then it's been mostly periodic throbs and twitching. A few in the morning, and sometimes I'd have a "flare" in the late afternoon but could sleep it off. At night, after my late afternoon nap I felt great! No issues! And thus has been the pattern for awhile; however, at times my cheek would "feel", no pain, just "feel". Which, of course had me concerned. Today, for no real reason, my cheek started burning, about a 3 on pain, for about 15 minutes. And now the nostril on that side burns a little from time to time. All my other pains/sensations have been a 1 or less, 1.5 at the most. I recently started using capsacian cream, but that takes awhile to work. I have been to a neurologist but haven't rush onto meds because it hasn't been that bad and, I have anxiety already (before TN). I have already decided to start meds on Monday, I've read up about meds in the book Striking Back, but it seems that most info is geared towards type 1. And everything I read seems to indicate that type 2 is harder to treat. I'm just a basketcase, sorry. My friends and family just don't get it. My husband is supportive, but he's not here right now.
Thank you so much for responding! You're an angel!
Thank you for the encouragement, as always, deeply appreciated.
Today was a good day, my best in a long time, and still, I wondered if my life would ever be "normal" again.
I trust you are doing well?
justjane37 said:
I'm glad that your MRI was clear. You are on the right track :)
I have been where you are so I know how overwhelming it is. It will take some time to figure out medication but many of us have really good success and are able to live our lives normally.
Keep me up to date.
Skytapestry said:Thanks JustJane37 for all your input. I can't tell you how much I appreciate you answering all my concerns so completely. Your experience seems close to mine, so it helps a lot. I have been researching meds and I figure trilepal will be prescribed for sure, I think in my case an antidepressant would be good too, however, I have a tendency for random heart arrhythmia which is not good for taking antidepressants. I will check with cardiologist. I have had an MRI which came back fine as did blood work.
Thanks again, so much. I feel more positive.
justjane37 said:I can identify with many aspects of how you describe your pain. For me mornings are pain free and late afternoon is the worst time. And yes the pain does come and go.
My experience with TN is that you need to look into medication, which you are doing. There are certain drugs that can be more effective for Type 2 such as Amitriptyline, Nortriptyline & Lyrica...there are others too. Look under the tab at the top of the page labelled Face Pain Info and scroll down to medication. Some people benefit from using two or more meds together.
So you have pain on both sides? Me too.
Something else that we share is anxiety. I have learnt for myself that stress, anxiety and lack of sleep are my worse triggers. And when I look back my worst flare ups with TN have come during or just after very stressful times.
It sounds like you are taking the right steps to getting a handle on it. Also be sure you have an MRI if you haven't yet.
Skytapestry said:JustJane,
Thanks for responding! I am new to the site and it's been a Godsend. My symptoms started about 6 weeks ago with throbs and occasional shooting pain in my cheeks. Acupuncture seemed to stop the shooting pains. Since then it's been mostly periodic throbs and twitching. A few in the morning, and sometimes I'd have a "flare" in the late afternoon but could sleep it off. At night, after my late afternoon nap I felt great! No issues! And thus has been the pattern for awhile; however, at times my cheek would "feel", no pain, just "feel". Which, of course had me concerned. Today, for no real reason, my cheek started burning, about a 3 on pain, for about 15 minutes. And now the nostril on that side burns a little from time to time. All my other pains/sensations have been a 1 or less, 1.5 at the most. I recently started using capsacian cream, but that takes awhile to work. I have been to a neurologist but haven't rush onto meds because it hasn't been that bad and, I have anxiety already (before TN). I have already decided to start meds on Monday, I've read up about meds in the book Striking Back, but it seems that most info is geared towards type 1. And everything I read seems to indicate that type 2 is harder to treat. I'm just a basketcase, sorry. My friends and family just don't get it. My husband is supportive, but he's not here right now.
Thank you so much for responding! You're an angel!