Need help in asking the right questions! Confused!
Posted , 8 users are following.
Hello everyone,
I need help and I am confused. Last Oct. I went to see Endodonist because I was having pain and thought it was either a root canal problem or a cracked tooth. Dr. kept questioning me about the cold pressure and what hurt more. I was frustrated because after paying for xrays and nothing major showing up he told me to call him when I would have extreme pain and come in. Well, wanting not to waste his time or mine I chose to wait and take tylenol or ibuprofen when I would feel some kind of pain. It's Feb. 7th and the fifth day of pain I went back yesterday because the pain was overpowered by sharp and throbbing feeling. I felt like I was going to faint and throw up because of this pain on my left side of face. I was glad to finally have this pain that surely the guy could see the problem. To my dismay, after x-rays and him trying to see where the pain was coming from, he told me that he did not believe my teeth were a problem. I started to tear up because I did not understand what or how this pain is happening at different times and sparadicully. I told him I felt like I sounded like a crazy person. He has sent me home with muscle relaxers and wants to see me in a week before he refers me to someone else. It's the next day and I started early this morning with sharp pain spasms and all day at work total discomfort. The spasms did not occur all day but I have been taking Tylenol/Ibuprofen all day. What kind of questions should I ask Dr. if he decides that i'm fine? Does anyone know why he would give me another week to see him before he decides his next decision. He has allready told me it is not my teeth. I feel confused about all this but mostly the past week has been painful and I am extremely tired when I get home from work . Tonight, after my second muscle relaxer I am starting to feel better but hate that it has taken this to help me sleep! Can anyone share your first experiences so that I can try to understand and try to see if this is where I'm headed. I know it is not TMJ because the constant pain sometimes consecutively and so sharp that it makes me want to cry, and that is with overcounter meds in my system tells me something is not right. I'm 56 years old woman and a receptionist at a hospital and this past week has been the worst. Sorry, for so many words but it's so hard to explain.
Thank you in advance for any input!
Irma
0 likes, 10 replies
anyazora irma46743
Posted
Hi Irma-
I'm so sorry for what you are going through right now. I remember that time. If you have trigeminal neuralgia (TN) then muscle relaxers will not help, neither will Tylenol or Ibuprofen or opiates*. It does sound though that you might actually have a good endodontist. It sounds like he knows its not your teeth. As long as he is not being demeaning and acting like it is in your head or anything like that. What doctor is he sending you to?
At this point you should see a neurologist. They can diagnose and treat trigeminal neuralgia (TN). You need an MRI to rule out other issues like brain tumors. They will probably do an MRA to see the blood vessels. Blood vessels over the trigeminal nerve can be the cause of the pain. So can MS lesions like in my case.
The best and most used drugs are anticonvulsants. One in particular: tegretol. Some doctors have even used it as a diagnostic tool for TN.
I know you are in pain and the pain is awful. I was housebound and mostly bedbound by the pain for almost nine months. But after working to find the right mix of medications I got the pain down to where I didn’t feel like I was going to topple off the edge. And then I did massage and meditation which also helped lower my blood pressure and pulse which rises when I am in pain. Last thing which was huge I found my food triggers. This happened accidentally but I am so happy it did. I have cut out sugar, dairy, citrus, caffeine and chocolate. (I fudge and have a slice a pizza once a month and a coffee every week or so.😁) I would never believe I did that because I was huge sugar died but the pain was so bad it was easy.
What I’m saying is there are things you can do. There are medications and there are also procedures and surgeries. There is a great support group on Facebook just called Trigeminal Neuralgia Support.
I will be thinking of you and sending you many healing thoughts and blessings.
*Almost all opiates don’t work for TN for most patients except for methadone and one other I can’t remember the name of. Both are used for substance abuse disorder. But they are also very helpful for neuropathic pain.
thomas37119 anyazora
Posted
Let me concur with the previous response! Please see a neurologist as soon as possible! I have had gamma knife and cyberknife surgeries over the last eight years! it is non invasive with some side effects but nothing like my previous facial pain. I also took neurotin which helped control my pain! Good luck!
irma46743 anyazora
Posted
THANK YOU SO MUCH TO ALL OF YOU! I'm not sure what is next since he (DR) chose a week to see me again. He has been very kind, and I THINK he is being cautious. When all of you found out did you share with others you work with. i have no idea , how this is going act up with me but from what I understand it's different for everyone. I feel like I'm walking on eggshells and today was a good! My teeth dont even feel sore tonight! This is so strange. In between the months of OCT.-FEB. I probably had some episodes just not as bad but I constantly kept taking tylenol/ibuprofen till that didn't work anymore. I'm scared that if I dont have anything again the DR. will just tell me that he is glad muscle relaxers helped. THEN, the end till the next bad few days happen and I HAVE to start all over again!
BLESSINGS EVERYONE! I CONSIDER ALL OF YOU WINNERS IN this battle!
Irma
Steve0116 irma46743
Posted
Hi Irma, My name is Steve. Your situation sounds very similar to mine. It started with what i thought was a severe toothache. A Root canal, couple of fillings and still no relief. i then went to my family Doctor that loaded me up with opioids. I then went to an Endodontist and he was quick to send me to a neurologist. My neurologist was quick to tell me that i had Trigeminal Neuralgia or TN. After trying several medications finally found one that relieved the pain. This was about 18 months ago. I now am pain free. I now take tegretol . My advice is get to a neurologist quickly. I didn't tell you about my pain, you know about that. I'm praying for you. Please let us know how you are doing. It does help to share. This disease is not very well known by many Doctors. My family Doctor had not heard of it and keep feeding me opioids.
STEVE
army183 irma46743
Posted
Hi Irma (excuse typing cant get fonts to work)
i think we all started our TN journey at the dentist. the TN Association (TNA) in UK is a great resource for information and publications they do a booklet called TN for Dentists as well
yes you must get referred to a neurosurgeon and have a good quality MRI - your subsequent treatment will depend on that. Accurate diagnosis is critical / dont mess around with pain killers if it is true TN then youll benefit from the carbamazepine drugs and similar
good luck
Big D
Bean926 irma46743
Posted
Irma, thank you for finding help in this forum. I agree with the other replies, having suffered from trigeminal neuralgia for nearly 4 years now. Please see a neurologist asap to confirm your diagnosis, and seek treatment. This disease is not fatal, except I believe it can drive you mad.
I had CyberKnife surgery last year and the pain is nearly gone. I still take Trileptal (oxcarbazepine) daily for the remaining symptoms, because my experience with Tegretol (carbamazepine) was not good - I could not function normally at work or home while taking it.
Please know there are others out here who understand your experience and will share ours if it helps. Hang in there!
ernestine_93088 irma46743
Posted
It can be frustrating waiting for a diagnoses.I feel your pain as I am also 56 and I have been living with TN for 7 yrs.These are some of things I use to help with TN( Trigiminal Neuralgia) pain. You can get over the counter Lydocaine patches or roll on at your local pharmacy that can help with nerve pain. I use heating pad some use ice on area of pain. Hope this helps and that you get diagnosed soon.
irma46743
Posted
THANKS EVERYONE! It's crazy but today was a good ! So crazy that after 8 days of pain, confusion and worried about going to work! Now, last night I had a muscle relaxer and a small drink of HONEY WHISKEY! I was concered this morning because at 630am it usually begins. Made it to work , clocked in and began. I'm not gonna lie I KEPT EXPECTING THE WORSE. I do not like that Iam constantly feeling like something is going to happen. ALL OF YOU ARE SO STRONG! I just hope I'm one of those people that doesn't feel anything like this for a long time. I'm also concerned doctors or people wont believe me. One of those days, I felt sick, feverish, and like I was going to faint. The ladies I work with, totally ignored me! At that moment I was practicaly in tears! I dont know how to act today, I felt so normal!
I'll listen and continue reading! I feel so bad for everyone that has this battle!
BLESSINGS
Irma
Steve0116 irma46743
Posted
Hi Irma,
One thing seems to be consistent from all of us is to go see a neurologist. It won't hurt and it just might help you. You ask about telling others , for me I had no choice. I have a job that requires me to speak in front of others, I am a ministry leader for Celebrate Recovery. My TN was so bad I couldn't talk, brush my teeth, comb what little hair I have, shave, or drink. My problem was obvious. I printed information to give to others when needed or show the articles online. I am praying you get better and find a treatment that works for you. You might want to take atricles with you when you see your DR or a Neurologist. This is just my opinion. My first neurologist didn't know much bout TN.
God Bless you and give you healing
Steve
Peteh irma46743
Posted
hello Irma. have a look at mindfulness practices. they helped me enormously to manage the pains. they helped me to be with and go with the pain instead of reacting to it which would then cause a relay of more pains in a vicious circle. have a look at the videos by john kabat zinn on utube. i had a microvascular decompression last july and the relief was immediate. its a horrible condition but you will get well again. this site was a huge help and support for me. best wishes. pete.