So sorry Beekeeper :( Sometimes going to bed is just the best thing to do. Hope you feel better.
beekeeper said:
I am just depressed today- it is about 10 am-- and I'm going to do a wee bit around the house- take a shower and go to bed... I am tired of doctors-- and everything else...... just need to go to bed for a while..... :(
Beekeeper -
Are you sayng your pain started in your ear and tooth and then when you had a root canal it got worse? That sounds like real TN..coming out of no where. Or did you have the root canal and then started having pain in the ear and worse in the tooth?
I had a grafting procedure for a receding gum and after that procedure started having tooth pain...thought I was having an abscess and needed a root canal. But everyone who checked the tooth, sinuses, etc. said there was nothing wrong with the tooth. Also I got NO relief from the usual meds for TN (tegretol, gabapentin, baclofen, etc). Eventually, I had the tooth removed..before I even had my first MVD. After the MVD...no pain. But when my pain returned after almost 9 years...the exact same tooth pain was back (and still is) even though the tooth is gone. I would think twice about having the tooth removed. Unless it it hopelessly damaged by decay...and even then I would consider having a crown instead of extraction.
Feel better!
Not Again said:
So sorry Beekeeper :( Sometimes going to bed is just the best thing to do. Hope you feel better.
beekeeper said:I am just depressed today- it is about 10 am-- and I'm going to do a wee bit around the house- take a shower and go to bed... I am tired of doctors-- and everything else...... just need to go to bed for a while..... :(
Yeah- started in ear-- had balance test..moved to my face. --then it moved to my tooth- had root canal-- thinking WOW-- this is going to fix it but BAM-- 10 x worse now......that is how it happened...... began w/ ear pain and vertigo...... and earringing....... I don't know....... I am in a rural area- and getting answers-- is like-- well---- "pulling teeth." It has been going on since November--- I just don't know how I will handle this neurontin as it makes the bipolar---so much worse..... swings from severe depression to huge spells of either agitation or highs.. I have mixed episodes--- and it has not been under control for sometime... I am "treatment resistant" - the shrink says.
Not Again said:
Beekeeper -
Are you sayng your pain started in your ear and tooth and then when you had a root canal it got worse? That sounds like real TN..coming out of no where. Or did you have the root canal and then started having pain in the ear and worse in the tooth?
I had a grafting procedure for a receding gum and after that procedure started having tooth pain...thought I was having an abscess and needed a root canal. But everyone who checked the tooth, sinuses, etc. said there was nothing wrong with the tooth. Also I got NO relief from the usual meds for TN (tegretol, gabapentin, baclofen, etc). Eventually, I had the tooth removed..before I even had my first MVD. After the MVD...no pain. But when my pain returned after almost 9 years...the exact same tooth pain was back (and still is) even though the tooth is gone. I would think twice about having the tooth removed. Unless it it hopelessly damaged by decay...and even then I would consider having a crown instead of extraction.
Feel better!
Not Again said:So sorry Beekeeper :( Sometimes going to bed is just the best thing to do. Hope you feel better.
beekeeper said:I am just depressed today- it is about 10 am-- and I'm going to do a wee bit around the house- take a shower and go to bed... I am tired of doctors-- and everything else...... just need to go to bed for a while..... :(
I'm surprised that they won't cover Botox (are you in the US?), because they'll cover it for migraines, most of the time. Is your neuro willing to work with you to see what kind of diagnosis would get the magic insurance purse strings to open?
(Sorry, had meant to come back to that particular comment, and only just remembered!)
Not Again said:
It really galls me when insurance won't cover remedies that are proven helpful for real problems, when they are also used for cosmetics...like Botox. In fact, I am going for some tomorrow. I had it done once before my son's wedding (pure vanity 'cuz I wanted to look good...lol) and discovered that it helped reduce the amount of eye pain that I get. I don't know why it works....maybe I squint or something when I read and it aggravates some little TN branch. All I know is that it helps. Of course....not covered by insurance; but to me it's money well spent because it helps reduce the pain!
I bought the book STRIKING BACK-- and have almost read it all. I go to see the neurologist tomorrow. After reading EVERYTHING that can cause one-sided facial pain that never lets up-- is a dull throbbing ache-- is in the ear and near teeth- and shoulders-in your jaw and facial bones...... I guess I will be going in a bit more open-minded..... WOW..... if you don't know what you have-- or only one doc has told you-- YES- You need to order this book from BARNES AND NOBLES.... I am truly wondering if this is myofascial pain or TMD--- I have fibro--- I have heard the words myofascial before-- As a child I was told I had TMJ (I had severe ear pain- but no infection- it was labeled TMJ) -- and am still going to ask about this MRI--- but I kind of understand why the neuro started where he did now-- w/o the MRI...... The gabapentin did help-- it just sent my bipolar over the edge- and it has effected my swallowing-- so many of these drugs do...... That book is an ESSENTIAL........ -- I have had to start reducing the gabapentin- b/c I am choking on everything and this still doesn't explain cognitive issues----- but now he will know the gabapentin did HELP-- it will help him know where to go from here. MRIs are very costly-- I am allergic to contrast dye--- so..... I will keep you all posted. Could this stll be TN? I imagine so--- Just going in -- w/ more questions-- and hopefully some answers.. I don't see how a neuro can even begin to determine what the source of facial pain is, however, without touching the patients face or neck--.... My Endodontist even felt a bit on my neck! Again, the book is a must have, I think. Please wish me luck...... xx beekeeper
I'm glad you feel more informed:) I wish you luck!!! I hope you can come to some conclusion and find the right meds to rid you of your pain...::))))
Hi Beekeeper -
Glad you read the book and are going to the neuro "armed" with info that can help him determine the cause of your misery. If you have not already done so, I would also take the free diagnostic test developed by OHSU's Dr. Burchiel...it has some specific TMJ questions at the end. And you can print it out and take it with you. https://neurosurgery.ohsu.edu/tgn.php
Also FYI - I had horrible cognitive issues when I tried gabapentin....and I was only on 300 mg/day. Never could get to a higher level...I just couldn't function .... and it did not help my pain one iota.
I had Botox the other day and my eye pain seems to be subsiding...yaaaaaay! Wish I could find a cure for the tooth pain too. I am going to ask my PMD about the cream.....at this point I figure "can't hurt...might help".
Good luck with your appointment tomorrow and please keep us posted. I hope you have someone to take with you as your advocate and to take notes for you.
:)
Beekeeper said:
I bought the book STRIKING BACK-- and have almost read it all. I go to see the neurologist tomorrow. After reading EVERYTHING that can cause one-sided facial pain that never lets up-- is a dull throbbing ache-- is in the ear and near teeth- and shoulders-in your jaw and facial bones...... I guess I will be going in a bit more open-minded..... WOW..... if you don't know what you have-- or only one doc has told you-- YES- You need to order this book from BARNES AND NOBLES.... I am truly wondering if this is myofascial pain or TMD--- I have fibro--- I have heard the words myofascial before-- As a child I was told I had TMJ (I had severe ear pain- but no infection- it was labeled TMJ) -- and am still going to ask about this MRI--- but I kind of understand why the neuro started where he did now-- w/o the MRI...... The gabapentin did help-- it just sent my bipolar over the edge- and it has effected my swallowing-- so many of these drugs do...... That book is an ESSENTIAL........ -- I have had to start reducing the gabapentin- b/c I am choking on everything and this still doesn't explain cognitive issues----- but now he will know the gabapentin did HELP-- it will help him know where to go from here. MRIs are very costly-- I am allergic to contrast dye--- so..... I will keep you all posted. Could this stll be TN? I imagine so--- Just going in -- w/ more questions-- and hopefully some answers.. I don't see how a neuro can even begin to determine what the source of facial pain is, however, without touching the patients face or neck--.... My Endodontist even felt a bit on my neck! Again, the book is a must have, I think. Please wish me luck...... xx beekeeper
When I try to take that neurological exam my computer says it is a high risk site... Do you know if there is another neuro test online I could take and take to my doctor tomorrow? It might help me a lot. Well, the Gabapentin-- seems to have made it more difficult for me to swallow-- I am not sure- but only .01 percent have this side effect. I can say though- I have reactions to medications that often fall into that percentage--- .... I don't think Gabapentin is an option for me anyway- due to the mania... The face cream helps- but one thing I am not sure about- is that when I take 10 mg of Percocet (like the gapabentin- it makes me sooooo hyper)-- It helps SOME of my pain (not all of it)-- DOES this mean-- it is def. NOT TN? sigh-- Hoping he can sort this all out... I keep reading and wonder sometimes how facial pain is diagnosed AT ALL.... LOL...... Good Luck w/ the Botox.... I would not even try that-- I have NO IDEA what the .01 percentile side effects is for this drug-- but I imagine they could be bad.. LOL........ and once it is in there- (your face- nerve)- it is in there........ As for the cognitive issues- these started up before the Gabapentin-- simple things-- like basic math/ recall of information/ being able to address an envelope correctly-- leaving out letters in words when writing.... by hand, esp... We also have a Maine Coon-- He is a small for a Maine Coon- and we did have a another fuzzy cat- but she was just a normal cat. She died last year--- and all of a sudden I keep calling Ted (the Maine Coon) - the name of the cat that died last year...... I don't know what's happening, frankly.... MAYBE he will be able to come up w/ something-- memory stuff - cognitive stuff - keeps getting worse.. All so confusing. xx beekeeper
Thank you- me too...... I hope you get to feeling better- I hope this appt. goes well--- they fly by so fast- and you have so much you need to cover.... Then it will be waiting another month. The one thing the book says though- is not to be medicating patients all over the place until you have a diagnosis------ Well, uh- he was medicating me w/o any sort of diagnosis....... I just read this part of the book-- ... Who knows...... I feel bogged down, frankly... xxbeekeeper
lillyh said:
I'm glad you feel more informed:) I wish you luck!!! I hope you can come to some conclusion and find the right meds to rid you of your pain...::))))
I don't get any warning messages for the OHSU website...and I have 2 virus programs running on my computer. You can also go to their main page http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/facial-pain/index.cfm
and there is a box on the right side (under where it says Make an Appointment) that says Facial Pain Diagnostic Tool and you just have to click in the box where it says "Learn More" and the test opens right up. I don't know of another one.online. If nothing else, I would print out the tool for your Dr. or give him the website.
The Facial Pain Association also has a page that has questionnaires and tips for going to the Dr & getting a diagnosis. It is free to sign up and join. This is their webpage that has the links:
http://www.fpa-support.org/knowledge-base/diagnosis-symptoms/tools-questionnaires/
Best of luck to you and hang in there...you are not alone!!
beekeeper said:
When I try to take that neurological exam my computer says it is a high risk site... Do you know if there is another neuro test online I could take and take to my doctor tomorrow? It might help me a lot. Well, the Gabapentin-- seems to have made it more difficult for me to swallow-- I am not sure- but only .01 percent have this side effect. I can say though- I have reactions to medications that often fall into that percentage--- .... I don't think Gabapentin is an option for me anyway- due to the mania... The face cream helps- but one thing I am not sure about- is that when I take 10 mg of Percocet (like the gapabentin- it makes me sooooo hyper)-- It helps SOME of my pain (not all of it)-- DOES this mean-- it is def. NOT TN? sigh-- Hoping he can sort this all out... I keep reading and wonder sometimes how facial pain is diagnosed AT ALL.... LOL...... Good Luck w/ the Botox.... I would not even try that-- I have NO IDEA what the .01 percentile side effects is for this drug-- but I imagine they could be bad.. LOL........ and once it is in there- (your face- nerve)- it is in there........ As for the cognitive issues- these started up before the Gabapentin-- simple things-- like basic math/ recall of information/ being able to address an envelope correctly-- leaving out letters in words when writing.... by hand, esp... We also have a Maine Coon-- He is a small for a Maine Coon- and we did have a another fuzzy cat- but she was just a normal cat. She died last year--- and all of a sudden I keep calling Ted (the Maine Coon) - the name of the cat that died last year...... I don't know what's happening, frankly.... MAYBE he will be able to come up w/ something-- memory stuff - cognitive stuff - keeps getting worse.. All so confusing. xx beekeeper
dear beekeeper, I also am so sorry you have this TERRIBLE PAIN also. if at sometime I would love for you to friend re quest me I would love to chat with you so far places I Yves went and read other stories yours is the closes to mine once again I am SOin 2006 i. am at (my witted Eng. SORRY!!!! my Ent. told me l had tn 22 yrs. ago I also have tmj and mialso likeyour self that TERRIBLE pressure behind my right eye, mine is all on the. right side along with the burining and aching and throbbing pain also the vice grip feeling in the back of my head and bone pain from a failed mvd.in 2006. I sure hope we find relief. soon hugs to you dawn
I am sorry I made such a mess of my last reply but I hope you can make out most of it. I have a kindle fire the 1st one but I still don't. know what I am doing I keep running into my 15yr. old grandson's. room when I need help he is playing xbox. oh I wanted to mention I also had a mainecoon she was BIG at 6 mo. and beautiful I found her believe. it or not the neighbors left her in the winter outside she was only about 4 weeks old she wandered. over to my house and became mine I showed those neighbors they could of cared less. that's so terrible but when I took her to the vet is when I found out what she was, she was so young, I had a rolled turfy pillow that she would nurse on in my bed, she did even as she got older maybe three ot four she passed at 16 yrs. old of old age I still miss her hugs to you dawn
I don't. know what happened to my first reply but I wanted to tell you I am so sorry about your pain as I have been reading you are the first that I have found your tn is a lot like mine, mine is all on the right side with the eye pressure, the burining, the aching throbing pain that is almost all ways there I also had a failed mvd in 2006 now I still have the vice grip pain in the back of my head and bone pain, I have lost 30 pounds in 3months I can drink carefully with a straw I'm sure you know you understand eating I just about have had to quit insure hope you have a good support system I have my mom but. her health is not very good although she does her best
At 86she is amazing I would be lost without her. but it makes me feel b ad because it. should be the other way. around ok I need to quit but one more quick question I was reading the meds in your cream I wonder if it has a name? I was given lipoderm which has a few of the same meds but baclofen no matter what form makes me sick to my stomach so I had to stop taking it all together ok I hurt to bad I need to stop I pray you have a good night and painfree night hugs to you, dawn
Dear Beekeeper~ I didn't read all of the replies to you but I read your original post and some replies. I just wanted to give you my experience. I had pain in the left jaw for 6 yrs on and off. Many, many root canals, even repeated on the same tooth, extraction of a tooth I said did not hurt and always told I was having referred pain when I complained of pain into other teeth and into sinuses and side of the face. I was told I had a fear of the dentist! I didn't, or why would I subject myself to all that. It blew up in January into an all night what I thought was a migraine above my left eye. Narcotics did not touch this pain. For days and days after that occasional lightning shocks above left eye. I didn't know what was happening to me. I'm a very healthy, active, hard working person. I was supposed to go back to the dentist for them to finish up the work they had done right before all this left side above eye pain started (I still had the left jaw pain).
I just couldn't go back in I was in sooooo much pain so I went to my family doctor for advice. I thought I needed prednisone or something. When I explained all this. The smart GP that she is, she knew what it was and ordered an MRI. Why didn't I go to her sooner? She prescribed a compound cream like you describe and muscle relaxers. The didn't work at all. I was back in a week in the most horrific pain I've ever been in. I couldn't even speak. I had stabbing pain in my ear to the back of my throat, and in all three branches jumping all over the place. She quickly prescribed anti convulsants and referred me to a neurologist. I believe they prescribe the cream and muscle relaxers as a way of confirming TN. As in, if they don't work and anti convulsants do work, then you have it. The anti convulsants started easing my pain immediately but it took a while to work up the dose to where I wasn't crying constantly from the pain.
Here's my point now. I have pain in all three branches, the side of my head, behind my ear and my scalp sometimes. The pain jumps around in all three branches. Sadly mine is in the right side as well. I think there was something about Gabapentin causing short term memory problems and brain fog? The Gabapentin is the worst for that, for me anyway. I could only return to work reducing the Gabapentin. I eventually got fairly used to the Tegretol.
So, I think you have to find the right Neurologist to diagnose it. I love my neuro.
I hope this helps and confirms that it can be in all three branches.
xoxo
Pain in only one branch at a time? Oh, man, he would be SO fired for that comment.
No MRI? he would be SO fired for that one too.
Trust me, I have had thyroid cancer, and there are endos out there that have NO clue about this stuff.
If its not diabetes, they just shrug you off. go take your pill and be a good girl, and leave me alone.
I have found it very easy to fire anybody who obviously knows nothing about what I am PAYING him to help me with.
You have to keep trying, but you WILL find a more empathetic doc. You just have to keep shopping.
Hi Hope- I have been on a lot of Gapapentin now--- and it helps quite a bit! but you are right- my memory is SHOT and I keep gaining weight. I wake up in the morning - not remembering what I did the day before--- It is rotten- but I can't take tegretol............ I still have a tooth that is bothering me--- not sure what the deal is there... I wonder what my neuro will say now that the gabapentin is working? I am so sorry you went through so much--- I have also had trigger point work by a massage lady that helps a lot- I just can't afford to have it done a lot...... she is great though....... xxbeekeeper
Hope said:
Dear Beekeeper~ I didn't read all of the replies to you but I read your original post and some replies. I just wanted to give you my experience. I had pain in the left jaw for 6 yrs on and off. Many, many root canals, even repeated on the same tooth, extraction of a tooth I said did not hurt and always told I was having referred pain when I complained of pain into other teeth and into sinuses and side of the face. I was told I had a fear of the dentist! I didn't, or why would I subject myself to all that. It blew up in January into an all night what I thought was a migraine above my left eye. Narcotics did not touch this pain. For days and days after that occasional lightning shocks above left eye. I didn't know what was happening to me. I'm a very healthy, active, hard working person. I was supposed to go back to the dentist for them to finish up the work they had done right before all this left side above eye pain started (I still had the left jaw pain).
I just couldn't go back in I was in sooooo much pain so I went to my family doctor for advice. I thought I needed prednisone or something. When I explained all this. The smart GP that she is, she knew what it was and ordered an MRI. Why didn't I go to her sooner? She prescribed a compound cream like you describe and muscle relaxers. The didn't work at all. I was back in a week in the most horrific pain I've ever been in. I couldn't even speak. I had stabbing pain in my ear to the back of my throat, and in all three branches jumping all over the place. She quickly prescribed anti convulsants and referred me to a neurologist. I believe they prescribe the cream and muscle relaxers as a way of confirming TN. As in, if they don't work and anti convulsants do work, then you have it. The anti convulsants started easing my pain immediately but it took a while to work up the dose to where I wasn't crying constantly from the pain.
Here's my point now. I have pain in all three branches, the side of my head, behind my ear and my scalp sometimes. The pain jumps around in all three branches. Sadly mine is in the right side as well. I think there was something about Gabapentin causing short term memory problems and brain fog? The Gabapentin is the worst for that, for me anyway. I could only return to work reducing the Gabapentin. I eventually got fairly used to the Tegretol.
So, I think you have to find the right Neurologist to diagnose it. I love my neuro.
I hope this helps and confirms that it can be in all three branches.
xoxo
No one will order an MRI and I find this truly bizarre.... I am in a rural town and getting NEW docs is very hard-- b/c there simply aren't any....... I am supposed to see a new neuro in september--- a woman-- and hope to get more info from her-- and an MRI!!!! This is nuts..... I know I have said this a million times-- but if you are bipolar-- they think whatever you have is due to the bipolar--- throw in fibro--- and -- excuse my language-- you are screwed...... fibro and bipolar--- means in "doctor speak" that you are not sick. -- I wish it was not this way- but it is--- or so it has played out this way for me....
redbird2448 said:
Pain in only one branch at a time? Oh, man, he would be SO fired for that comment.
No MRI? he would be SO fired for that one too.
Trust me, I have had thyroid cancer, and there are endos out there that have NO clue about this stuff.
If its not diabetes, they just shrug you off. go take your pill and be a good girl, and leave me alone.
I have found it very easy to fire anybody who obviously knows nothing about what I am PAYING him to help me with.
You have to keep trying, but you WILL find a more empathetic doc. You just have to keep shopping.
Yes the last paragraph is so me. I keep getting things done to my face trying to solve this pain puzzle. Not 100% confident this is a nerve issue.
Today I just had an apiciodectomy. Long story. I won’t go pulling anymore teeth because the last time was a disaster.