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)