You and I share much in common. I have not used Lidocaine specifically because I hesitate to take anything that ends in "aine," I know after having used Cetacaine that I was allergic to that nasal spray, and all that did was make my TN worse.
I need to ask my neuro about it but I think the two drugs are related.
I hear you when it comes to sleep, but I think sleep is the one elixer that helps our bodies reboot to start another day on a positive note. If you can, get your sleep...
Do you perform any nasal rinsing? I swear by it even if I'm in the middle of TN attacks...it is kind of gross if you aren't used to it, but it is one of the best things you can do for yourself that is non-invasive.
Best of luck finding a solution,
John
Ernette Dawson said:
Lidocaine solution is recommended as a stop gap and is not long lasting. I use when I don't want to take extra meds that will make me foggy? A couple of squirts numbs the sinus and allows me to function for a while. I have also applied solution to qtip and placed in nostril and held it on the painful area. I caution you to discuss with your doctor. One - you will need a script, two - dosage, three - safety!
Ironic that I tuned in, I have been having sinus headaches on opposite side that was driving me nuts. I could not sleep and top and side of head and face was keeping me from sleeping. Neck, teeth, sinus and eyes were hurting in addition it made my right side burn and fire more.
Before crying uncle and going to my internist on Monday I used netti pot and took Allegra to no avail. I even took my doggies (okay children's- LOL) Benadryl! Ok not as bad as it sounds but it made me think about how pain can make you do goofy things.
Doc, knowing my background, decided to give me injection 15mg of NSAID, Toradol (I am on a try something new, for now, a pain med holiday) and prescribed Cipro. I did not awake to pain during the night last night, however I did not sleep much either. Today was a good day but I do not want to sleep for fear of being awaken with headache.
I posted last night the temporary solution of my neurologist injecting my trigger points with coatail of steriod and Licocaine to provide temporary relief. One of my troubling spots is around and in my nose and above my teeth.Again this is a temporary fix that allows me an hour or so of pain relief and a glimpse of what it was like to have no pain while awake.
I have an appointment with neurologist next week and plan to ask about the pro/con of these injections and will also the sinus connection. Thought it is reasonable that facial pain -TN affects the eyes, nose, mouth, .....m
Remain prayful and hopeful? You are among a kinship of positive And dedicated friends who, until there is relief for all, will provide insightfulness and a plethora of help and support. Thanks for letting me ramble. You are understood.
I have a similar story for the onset. Totally out of the blue. I was watching a movie and eating chips. I bit into a chip and it kinda went sideways and jammed between two teeth. BAM! pain like I'd never felt in my life. I found myself on all fours and it's been a roller coaster ever since.
I often wonder about that initial trigger point. If that chip hadn't lodged in my teeth that way...
Lisa (iamrite) said:
John -- Thanks! I was actually cautioning Kimburlee from the surgery, I don't need one myself.
BUT, I have struggled for YEARS with two things: migraines and sinusitis.... my doctor is now thinking this has all been an evolution to TN. My first severe bout with a migraine was 2002. I was in bed for three days with a the type of a migraine that the doctor told me they rarely see. I had no actual headache, but rather I had paralysis on the right side of my face and severe eye pain. Since then on, I have continued to struggle with these "migraines". In 2005, I started having severe sinus issues. Infection after infection after infection. No antibiotic was clearing these suckers up. This went on for about a year. Then, crazy as it sounds, the last round of meds combined with some serious use of a netty pot cleared it up.... for the most part. In 2008, the doctor then diagnosed me with TMJ and I have struggled with this for the past three solid years.
I actually believe now that this was all leading up to the day I had my first real TN attack. I have Type II, with some Type I pain depending on the day. In September the frequency of "TMJ" pain changed. I thought I was having severe ear infections but there was no inflammation. Dr. said it was a change in my TMJ pain. In early October, the pain actually moved to my teeth.... I really, really thought I had an abcess... went to the dental clinic and Nope, my teeth were all fine. Doctor then said I was clenching too hard, making everything just sensitive. So pain pills, anti anxiety, and a numbing agent. The pain gained intensity to the point that in the first week of November, the pain was so bad, I honestly thought I was going to go crazy. Just when I was considering the ER, the pain went away. This happened again a week later. Then two days after that. Shorter periods.
Then one day I was in Blockbuster picking out movies when I felt my first "zap". I actually dropped to the floor and had no idea what it was. I moved my head, it happened again. I got out of there, drove myself home, with these zaps getting stronger and faster. I ran to my bedroom crying (I live with my parents right now) and my mom chased me down. I couldn't talk, I was pretty hysterical. She calmed me down, the pain slammed into my jaw... I made it six hours before I told her that I didn't know what was going on but I was scared and I needed to go the ER..... I was seen by the ER DR and a Neuro on call that night and TN was diagnosed........ That's my back story.
I don't know if you meant OHSU, which is Oregon Health Sciences University..... That is where I am applying for financial assistance because one of the TNA Board Members is a neuro at that hospital and my research shows that they have one of the best places to be in the NW. So, I am just waiting for the official decision for now.
Oh and thank you for the compliment -- but I am 36 :) However, I do get the young thing alot. And I can tell you that I do not mind at all.
I ate chilled fruit straight from the fridge and wham! It seemed to send a signal of pain straight to my brain! I said this to the doctor if only i hadn't eaten that melon straight from the fridge (it had been there over night) his reply was it would have happened anyway at some other time. But i wonder too.
From one day to the next you might find a completely different set of triggers affecting a completely different part of your face. Unfortunately, due to the unique nature of individual effects, it is up to each individual victim to teach themselves about their specific disease.
If you haven't read "Striking Back," that book is a good place to start to learn about TN. It is a book you don't need to read cover to cover, but burrow into topics that catch your eye...it is getting a little old but it is still a good resource.
I have yet to be taken down by a chilled watermellon (that said, nothing surprises me anymore), but I always think about what I ate the prior day after a TN attack...I'm a firm believer in watching your diet (fruit should be a good bet, but stay away from spicy food if you can).
Your encounter with the insurgent chip doesn't surprise me, I've become leary about eating crackers or chips at all anymore (not much fun on Superbowl Sundays anymore that's for sure). If it wasn't the wayward chip, it is a good bet that sooner or later something else would have attacked you.
My first encounter with TN pain was on a bikeride I took a month after my Mom died. I wasn't eating anything, just leaning forward on a downhill stroke when my first stabbing lightning bolt struck out of nowhere, seemingly aiming to slice the right third of my face off.
At least you have a correct TN diagnosis, it took me another 6 years to diagnose TN.
Good luck finding a solution,
John
Todd Friesen said:
Lisa,
I have a similar story for the onset. Totally out of the blue. I was watching a movie and eating chips. I bit into a chip and it kinda went sideways and jammed between two teeth. BAM! pain like I'd never felt in my life. I found myself on all fours and it's been a roller coaster ever since.
I often wonder about that initial trigger point. If that chip hadn't lodged in my teeth that way...
Lisa (iamrite) said:
John -- Thanks! I was actually cautioning Kimburlee from the surgery, I don't need one myself.
BUT, I have struggled for YEARS with two things: migraines and sinusitis.... my doctor is now thinking this has all been an evolution to TN. My first severe bout with a migraine was 2002. I was in bed for three days with a the type of a migraine that the doctor told me they rarely see. I had no actual headache, but rather I had paralysis on the right side of my face and severe eye pain. Since then on, I have continued to struggle with these "migraines". In 2005, I started having severe sinus issues. Infection after infection after infection. No antibiotic was clearing these suckers up. This went on for about a year. Then, crazy as it sounds, the last round of meds combined with some serious use of a netty pot cleared it up.... for the most part. In 2008, the doctor then diagnosed me with TMJ and I have struggled with this for the past three solid years.
I actually believe now that this was all leading up to the day I had my first real TN attack. I have Type II, with some Type I pain depending on the day. In September the frequency of "TMJ" pain changed. I thought I was having severe ear infections but there was no inflammation. Dr. said it was a change in my TMJ pain. In early October, the pain actually moved to my teeth.... I really, really thought I had an abcess... went to the dental clinic and Nope, my teeth were all fine. Doctor then said I was clenching too hard, making everything just sensitive. So pain pills, anti anxiety, and a numbing agent. The pain gained intensity to the point that in the first week of November, the pain was so bad, I honestly thought I was going to go crazy. Just when I was considering the ER, the pain went away. This happened again a week later. Then two days after that. Shorter periods.
Then one day I was in Blockbuster picking out movies when I felt my first "zap". I actually dropped to the floor and had no idea what it was. I moved my head, it happened again. I got out of there, drove myself home, with these zaps getting stronger and faster. I ran to my bedroom crying (I live with my parents right now) and my mom chased me down. I couldn't talk, I was pretty hysterical. She calmed me down, the pain slammed into my jaw... I made it six hours before I told her that I didn't know what was going on but I was scared and I needed to go the ER..... I was seen by the ER DR and a Neuro on call that night and TN was diagnosed........ That's my back story.
I don't know if you meant OHSU, which is Oregon Health Sciences University..... That is where I am applying for financial assistance because one of the TNA Board Members is a neuro at that hospital and my research shows that they have one of the best places to be in the NW. So, I am just waiting for the official decision for now.
Oh and thank you for the compliment -- but I am 36 :) However, I do get the young thing alot. And I can tell you that I do not mind at all.
John, strangely enough, after eating the cold watermelon my tooth was in constant pain but the actual classic TN attacks came on later that week everytime I got of my push bike, we were on a cycling holiday at the time. Electric shocks each time we stopped to take a break. Was it the cold air? Or the fact I was probably clenching my trigger tooth onto the bottom tooth which does give me pain? Have not rode a bike since as afraid of a further attack, kept away from the watermelon also!
It is hard to say for certain what are the triggers. For me it is a pretty sure bet that I'll be in some sort of face-down posture (as I was on my bike), but later that afternoon after the day's ride I had several zings while lying on my sleeping bag in the gym. Triggers can come from other causes as well, I'm a believer in food allergies...some foods I just don't eat anymore.
Don't giveup the bike...now I ride but I maintain an upright standing postion (on my exercycle), this posture isn't a problem (knock on wood!). I have MS also so right now I stay off the roads.
John, I now avoid holding my head down for any reason. I have developed a pain under the eye and this happened after an exercise class when we were in a bending over position. On the way home my eye began to ache, i touched it and wow the nerve pain was bad,but thankfully only when i touched it. I now have to avoid make up as taking it off hurts my eye. I am hoping given time this will resolve itself. This is ATN/TNP rather then classic TN, my trigger tooth has hurt almost everyday since the watermelon, but it does seem to be settling down now.
At least you look pretty enough you don't need makeup, thank the Lord for your nice looks! Doesn't help much I know...
Is there anything in your symptoms that are sinus related? Have you ever tried nasal rinsing? You'd be surprised how much rinsing helps, for me it is a must at least once a day. How much water do you drink daily?
Hi John its Elaine. Thanks for the compliment i think i was wearing make up on the photo though! I did have a nasel spray as leading up to the TN and the Temporal Artrites (another head condition i have) I thought it was my sinus's to blame as i was getting terrible headaches whenever i had a cold. I could ask for another nasel spray. I dread getting a cold with the TN, over Christmas I did have one, I steamed my face each day and thankfully I did not suffer too much apart from a very itchy ear, which i was worried about, as you read on here so much about ear ache but thankfully it cleared with the cold . I enjoyed looking at your photos you are obviously an action man, what are your thoughts with the the link with bending forward and TN is it the blood vessels enlarging?
I really don't have much faith in any nasal sprays aside from rinsing, this is my preferrence because I continue to expell everything out in the hour or so afterwards. It requires bending your head over a sink or toilet in ways that are very creative, usually my head is side to side, but if I'm in better health I have no trouble bending my head forward (I know...parish the thought!). In your case you might want to be careful about avoiding putting your face down and doing your flush very gently at first, and from side to side. At night you want to make sure you allow enough time to flush he rinse solution out, otherwise you will notice fluid after you go to bed. You might feel some TN pain initially, but it should get better if you give it time. Be patient!
It sounds nutty but you are a good candidate for it,
To those of you who spoke of trying Lidocaine spay for TN, I finally got around to asking my neurologist about it and she didn't think it was a good idea. She was concerned about systemic problems (as I suspected).
A lot of my TN is focused in my nose and upper teeth and when I am having a really bad day I use a 4% lidocaine nasal spray. It gives me about an hour of relief for every spray. I am allowed to use it 4x day and I cherish those 4 hours!! My neurologist prescribed it. You may consider trying it for a pain holiday. Hope that helps!!
I worry about systemic reactions due to allergies, my neurologist thought so as well.
I'm glad it works for you though, it sounds like we suffer from similar issues...I wonder how many of us are TN sufferers.
Lisa26 said:
A lot of my TN is focused in my nose and upper teeth and when I am having a really bad day I use a 4% lidocaine nasal spray. It gives me about an hour of relief for every spray. I am allowed to use it 4x day and I cherish those 4 hours!! My neurologist prescribed it. You may consider trying it for a pain holiday. Hope that helps!!
My neurologist made me a nasal spray of lidocaine and ketamine 4/2.5%, it works amazingly to numb the pain for a little while. She said she thought the effects would last longer and longer as I used it, but that's not the case. It seems to make the area numb for 20 - 30 minutes and that's good enough when it's terrible. I recommend it.
I have tried cetacaine ointment (not spray) which only goes just inside the nostril 1/4 inch with Qtip. It does not do enough for me in my circumstance. It does numb a little bit. I think a spray that would go in further might help better, or if the doctor prescribed the ointment to be applied further in the nose with the Qtip..