Trigeminal Neuralgia*

I have been struggling with atypical facial pain for nearly two years. I've tried gabapentin, topamax, nerve blocks, muscle relaxants, medical marijuana and botox. Nothing has worked but after Botox I had five consecutive good days. Now I am in considerable pain which is constant, though I do have some good days. My doctor says I may have an immunity to Botox and I am having myobloc (another type of botox) later this week. I also use a compounded cream and find that medicated bandages (I cut them to size) give me some relief. Any ideas or suggestions are greatly appreciated!

Yikes! I just started getting these pains and have an appointment scheduled with a neurologist. I read this is progressive and see from your post that this is true. I can't say that there is anything encouraging about your experience but I guess it's good to know what I'm up against. I hope you find something that works for you. Do you have any suggestions on how to eat or talk without waking the beast? Also, I have two weeks until my appointment. Is there any over the counter relief? I am having difficulty with eating and talking mostly. Although I do have the occasional series of daggers for no apparent reason. Any help would be appreciated. Thanks.

Oh dear Katydid (LOVE your user name) ... Would you mind telling me how and when you started feeling the facial pain? What side of your face is affected? Yes Katydid, eating and talking plus wind and air conditioning are the most common triggers in my case, and it sounds like they are for you too. I used to ride my bike religiously up until the pain began. I want to give you as much advice as I can because you are in the same spot as I was 16 years ago. So, here's my story. I am a bit of a writer, but haven't published yet - usually children's stories - but the pain has stopped the stories from forming in my mind.

In Aug of 1999 I went to the dentist to have teeth cleaning done on my bottom right teeth. Well, this dentist was a 3rd year resident at a prestigious teaching hospital and he was about to go into practice with a dental group in October 1999. And, as my mother and I did for many years while she was still alive (died in 1969), she and I always went to dental schools to have our teeth worked on because the cost was nominal. So that's why I decided to choose this dental school connected to the teaching hospital. He started to give me the novocaine shot in the right lower jaw when I made a screaming noise and jumped out of the chair - luckily he had already taken the needle out of my jaw. Jokingly, he said: "Oh, I must have hit a nerve. Don't worry, you won't feel any pain now because the novocaine will take it away." And it did. After that I didn't think about what had happened. Then the creepy crawlers of nerve pain began a few weeks later, and I just figured it was my bad teeth, which I've always had. Now I am going to digress a bit (which I do a lot because Norco makes me .... uh, loooopeeee at times.). DON'T drink as much caffeinated and carbonated pop as I do. I am a diet Pepsi addict. I began drinking regular Pepsi when I was 15 and then graduated to diet when it first came out. No matter what I'm told about how bad caffeine is, if I'm going to have this pain no one is going to take away one of my only pleasures in life! Not drinking the pop wouldn't help anyway.

Beginning in 2001 the MDs I saw put me on every type of drug used for TN - mostly anti-epileptic drugs which were completely ineffective, phenobarbital, methadone, mexitil, oxycodone, morphine tablets .. I can't remember all of the others right now. In 2004, I started going to a pain management clinic instead of individual neurologists, and they started me on Norco 325 mg with ibuprofen in it and Valium 10mg 3 times a day. However, after taking Norco's 325 mg (hydrocodone with ibuprofen) since 2004 it has lost most of its effectiveness. Beginning last year they now allow me to take 2 at a time up to 6 a day along with the Valium. As an aid to help me sleep, I am on Seroquel 20 mg, which I don't take often because I sleep toooo long - over a day once. There is never a day when I am without pain - but not always severe enough to make me stop what I'm doing. But, I've never gotten below a 4 on the pain scale.

The ONLY drug that gave me and relief was Lyrica - used for nerve pain in fibromyalgia mostly (I'm sure you've seen the commercials). I took it for almost two months in 2006 and was in low-pain heaven - never having pain higher than maybe a 4 to 5 on the pain scale - and I can handle that. But I developed one of its side effects - eye vision problems which caused such blurriness that I was not even able to walk around the house without saying: "Oh, hello wall, how did you get there?", and not even able to read or watch TV. I am an AVID reader and I was devastated. So I had to come off the Lyrica and be restarted and tried again on all those other drugs until finally it was decided that I should just take the 325 mg of Norco with ibuprofen in it along with 10 mg of Valium.

I have had 6 stellate ganglion blocks steroids shot into the neck getting as close to the brain stem as they can. The trigeminal nerves come out of the brain stem with one branch going up the left side and the other going up the right side. I USED to joke around with the doctors and say: "Oh, I'm just a bundle of nerves!". I no longer joke around. It took almost two years to even be diagnosed with TN because I felt my pain was from infections and rotten teeth. The nerve blocks did not work because the pain was still on the right side of my face when I came out of the sedation. One MD had the nerve (pun) to say that I was lying. Why would I go through the procedure and then have to pay the cost of it if I thought they wouldn't work?

Now, seriously, learn as much about TN by searching the internet. Especially (!!) Google 'brain stem' and other sites that will give you information about the cranial nerves (there are 12 and they all go in different directions to do their jobs.) The trigeminal nerve is the 5th cranial nerve. Study up on your condition. The trigeminal nerve is the 5th cranial nerve.

You asked if there is anything you can take or do until your neurologist appointment in two weeks. I can suggest but I don't want it thought that I am prescribing any one thing over another. Before all those drugs I was on, I took OTC ibuprofen 800 mg about 4 times a day until my stomach told me to stop doing that. My husband was sweet and tried to help by giving me small hot wet towels to put on the right side of my face until I told him to please put a plastic bag on my pillow first! At first, that did help a bit, like about a few minutes, but you might try a small heating gel pack. At times, I still use one.

Over the past 16 years, I have been to the ER 10 times with intractable pain. My doctor isn't on staff there but they called him the first time I came in with the pain (it was midnight!) and he said to start me on a morphine drip. It made me fall asleep, which was nice, but the pain wasn't gone when it was time for me to go home - it was less though. I've never been admitted and there would be no sense to that, at least in my case. But when I got home, the pain came back, luckily not at a 10+++. And, yes, sorry to scare you - can't say this will happen to you - but I have had 10+++ pain. The last two times I've been to the ER (last August and November) the ER MD who saw me took the time to read my computer chart of all my prior visits, and I heard her say: "This is ridiculous." On her own she decided to give me one intravenous injection of a medication called Dilaudid - which I've been told is 10 x stronger than morphine. I don't know, maybe it is, but the ER at my hospital now knows that if I come in with a high pain score, I am to be given the Dilaudid. Katydid - it was a miracle to feel no pain anywhere, not even in the broken right foot which I had broken a week earlier and for which the ER me in a cast. Like I said, 2 Norco's at a time is a lot to take but one does what one needs to do - only if your doctor says you can - and I fell down three stairs and broke my right foot because I was loooopeeee !!!

I will have you on my mind Katydid until I hear back from you, and please do contact me through this website and let me know. I am anxious for you, but I am also encouraged for you because you have taken the first step toward being your own ADVOCATE. Being you own health-care advocate is knowing all you can about your condition AND by asking questions ... lots of questions until you feel you understand your problem and what treatment the doctor has planned for you. AND, most importantly about asking questions - now don't forget to do this - bring with you a list of your concerns, symptoms, and questions that you want answered. Some MDs don't like inter-active patients, so if you feel this neurologist is giving you the brush off find another one. I saw 3 neuros before I found the MD I see now. What still amazes and seriously aggravates me is that some MDs don't want to treat a TN patient. I have had two ER docs tell me straight to my face (this was early on when I first knew the diagnosis) that since they couldn't SEE my pain they wouldn't treat me because I was only there to get narcotics ... drug seeking they called it. If you ever get an MD say that to you - an ER doc or one in the office - do what I did. I called the medical director of the ER and the hospital and told him what happened and gave him the names of the two MDs who said what they said to me, and I found out that they were severely reprimanded. This is an example of what I said above - Katydid you MUST BE YOUR OWN ADVOCATE !!!!

I wish they had emoticons on this site because some of the good ones can tell someone's story so well. But I've said enough for now because my own pain is acting up. It's my own fault. Today we somehow got a 68 degree day (I live in a suburb 15 miles west of downtown Chicago), and I forgot that the window behind me is open ... aaahhh the warm wind. Don't let warm wind fool you ... wind is wind.

Like I said I will have you on my mind Katydid, and writing all of this to you has just become a story in my mind ... which hasn't happened in a long time. May I ask your permission to use your name, Katydid, as the name of the 8-week old female kitten I am getting tomorrow. We are feline lovers in this house, and over the past 22 years we have had 11 (not all at the same time - but it wouldn't have bothered me at all .... yeah, I'm THE cat lady in the neighbor). I better not go any further, first because of the pain and second because I need to get my pencil and paper to start writing my story. Always use a pencil in case you need to erase - which I always have to do to find just the right word. Guess what the title will be: Katydid. The love and empathy an animal can give a human being. EMPATHY - always show that to others or at least have it inside of you. It isn't sympathy. I have empathy for you because I can place myself in your position of living with this pain monster.

P.S. I sent two picture files and I hope they show up because I don't see them in this reply. Take care. MoonEagle (Judy)

@katydid P.S. Never forget to live as much of your life as you can and don't give into this monster. Eat carefully and eat soft foods. Liquids are just about what I live on. MMMM Chocolate malts!!! Also, my husband is just about the only man who can tell his wife to shut up ... so the pain won't start. Really!!! Take care.

Thank you so much for responding to my cry for help. You've been through so much and are still willing to reach out. Awesome!  I too have pain in lower right side of my mouth, am an avid reader, and used to go to the dental school for treatment when my brother was a student there. (I also love pussy cats but have none because hubbys allergic.)I've had two root canals in the last two years, both of which were done in hopes of eliminating pain. Hmmm.  But that pain was different than these daggers, lightening bolts.  I feel like I'm being electrocuted. It's hard to explain to someone what it's like, even the dentists. I can't imagine doing this forever. It gives me hope knowing that you have been dealing with this for sixteen years and you sound so upbeat, have a sense of humor and seem to be enjoying life. For some reason since the literature said opioids didn't help I assumed nothing would. I will take your suggestion and I'll be happy if I can just take the edge off. Now I'm going to veer off course and I have no medicine yet to blame it on. Lol. My niece lives in Riverside, is that by you?  I'm in NJ.  My sister has a rare cancer and because of that I have learned the importance of research, advocacy and support. I attend monthly meetings with her and I can't begin to tell you how much this group has meant to us, they have helped us find the right doctors and treatments and so much more.  You can go to the doctor, and learn a lot from the internet but there's nothing like having somebody that totally gets it. Thank you my friend, Mooneagle. (Love your spirit and how you got that name)PS  I didn't get the pictures, I'm sure they're great.  And I would be honored. Thank you. 

Hi Katydid ... Yes, Riverside is very close to me, about 3 miles SE of where I live. Does your sister live by or with you? That terrible monster (cancer) has not hit me yet, but it has gotten many others in my family. I was happy to read that you attend advocacy meetings - talking and the exchange of ideas is just about the only way to figure out a problem. I hope her cancer is treatable, even though it is rare.

Have you seen the neurologist yet? Knowing that you understand the importance of being your own advocate (and for your sister), remember to bring a list of your concerns and questions. Don't let this MD brush you off. I think I told you before that I went through three neuros before I found the right doctor, and he runs a pain management clinic. See if the neurologist you are going to see is affiliated with a PMC or see if there is one in your area. I know I had mentioned the medication Lyrica in my other note, so maybe after this MD listens to your concerns and determines that you actually do have TN - what else could it be?, but he has to make a definite diagnosis - ask whomever you end up seeing if he/she thinks that Lyrica would help. After having this monster rule my life since Aug 1999, I thought my whole world had turned around and I was going to be myself again (at age 54 in 2002 - now I'm 69, eekk) until I developed one of its side effects. That is what happened to me - but it doesn't mean it would happen to you. It also doesn't mean that Lyrica would be the right drug for, but I'd sure ask to try it.

I dread remembering the medication trials I was put through, the six steroid procedures, and all the anti-epileptic drugs, the incredibly dangerous opiods, etc. which took over two years for me to go through and never really helped. I began losing hope with all the pain and ... sorry to say - not wanting to live. Oh, in 2001, I was also diagnosed with an autoimmune disease called scleroderma (Google it), also called systemic sclerosis, which is eating up my body inside (it is what will do me in one day). In 2003, if it weren't for one of my cats (my black beauty Mickie) I would not be here today. Alone in the house, I spilled out onto the bed all the Valium I had, the Norco, and some other drug, and had a huge glass of chocolate malt (my most favorite drink), and I was ready to die. I wrote a note for whomever found me and put it on my husband's pillow on his side of the bed, and it read: "No ceremony; just gone." Well, Mickie was a pest of a cat and he was always hungry. He was able to open the door handle of our bedroom (brat), mainly because it didn't close all the way (ha!). He proceeded to jump up onto the bed (meowing like he had never been fed in all of his 15 years!!) knocking onto the floor ALL of the meds I had just poured out onto my side of the bed. Off the bed he jumps to investigate, and such fear as I had never felt before in my life overtook me, and I rushed him out of the room - with him REALLY meowing loudly now. I had to make sure that not ONE of those drugs could be found by any of our cats (we had 4 others) - who luckily were sleeping at the time, but - no - not Mickie, my love. It took me over an hour to find and count out all the drugs. They were under the bed, all over the floor, under two dressers, and some stuck under my blanket.

Well, that taught me a lesson. Feed Mickie 100 times a day. I gave that black beauty (and he was) a huge bowl of tuna, which then woke up the four other cats, and I had to feed them tuna also. I laid on the living room floor and let them jump and hop all over me, lick my face (on which I had put some tuna), and I fell in love with life again. And the best part of this story ... during all that time - finding the pills, feeding the cats, playing with them like I was one of them (they always liked that) - I DIDN'T HAVE ONE PINCH OF PAIN. My mind took me to the place I had to be ... save my babies.

Katydid: I meditate also. It calms me, especially when the pain hasn't abated yet, and this is what I say: "Relax the mind, relax the body, relax the mind, relax the body" ... over and over and over. At times, my husband Harvey will sit with me, hold my hand, and whisper the words with me. My body relaxed while I was playing with my five cats (they are all gone now, but we have five more - yes, we are cat fanatics) because my mind was not on the pain, only on knowing my babies were safe.

Oh, now I'm crying because I have pictures of those five cats above my computer and I can hardly see the computer screen to write anymore. Please keep in touch. And I will pray for your sister - she has you as her advocate. All my love and caring, MoonEagle (Judy)

Hi Colleen: Just a quick question. I'm not very computer savvy - just a good typist. Please tell me what it means to put "@" before someone's screen name. Am I supposed to be doing that all the time? I don't even understand what this thing call "hashtag" means. I think it is the pound sign - # Am I right? Let me know if I should be using the @ symbol all the time. Take care, MoonEagle (Judy)

Hi @mooneagle,
Putting the @ before someone's screen name does 2 things:
1. It lets everyone know to whom you're replying.
and
2. It sends that person an email notice that they were mentioned in a message.

Additionally, we can use it to bring someone into a conversation that there may not be aware. For example if someone were speaking about TN someone else in Connect, I could mention their @screen name and they would be notified that they were mentioned. Hopefully that would encourage them to join the conversation.
Thanks for your contributions to the community Judy!

Have not tried the cream, my neurologist started me on dilantin , it hels a little. Still on Neurontin and nirtriptoline, they had to stop the Trileptal, because sodium kept falling. Pain not as often but still intense.

Hello sweetspirit21, I am new to the group also.
annamh