I am 29 years old and was diagnosed with TN in February 2009. After about 2 months of intolerable facial pain and various medications, I had no symptoms and my doctor took me off of all of the meds. Within the past month, I have had some facial pain but it wasn't enough to interfere with my daily life activities. This week, it has been unbearable.
I am a special education teacher and my students struggle when I am not at school. Needless to say, I try my best to be there everyday, with or without pain. I went to the Immediate Care Center after work yesterday and they put me back on Methylprednisolone (4MG Dose Pack), Amitriptyline(50MG) and Lortab (10-500). These were the medications that worked for me when I was first diagnosed.
Last night, I got no sleep because the pain was so intense. I tried to go to work but ended up throwing up and crying from the pain. I am now home and feeling like an ice pick is stabbing me in the right side of my face.
I was able to sleep for a couple of hours once I got home but I awakened after I turned my head and screamed out in pain. I am contemplating a trip to the ER to get some relief. I know the meds are going to take a while to kick in but I just don't feel like I can take anymore pain today.
Last February, I went to the ER twice. Once for my initial diagnosis and again when I needed pain relief. They were great the first time but when I went the second time, I was accused of only coming in to "get shot up with IV pain medication." Obviously, I will NEVER go back to that ER. I am not interested in anything other than relief and sleep at this point.
Here is my question for you...Should I go in to the ER and hope that they may admit me for the night? Or, should I just stay home and deal with it?
Thanks in advance for your feedback and support. I am so glad I found this site and can communicate with others who are suffering.
The first thing is, have you talked to your doctor? Do you have a neurologist or are you seeing your family doctor? The big thing about TN is that normally pain medication has limited success. That is why we are prescribed daily medication. There are many times that for a few days, weeks or even months the symptoms - the insane pain and aches disappear on their own. But more often than naught, the pain comes back and often it is worse.
Since it takes a while for the medications to build up in your system to work… it’s rough. I’m not a doctor and I can’t advise you as to your course of action regarding going to the hospital or roughing it out. I can only say if it were me… I’d look into getting myself comfortable and roughing it out and make sure to see my doctor the next day. The big thing is to RELAX and BREATHE… when you tense up - when you get emotional - it just makes it worse.
If you hadn’t read Striking Back, I wholeheartedly suggest you get a copy from http://www.endthepain.org/ It is well worth the cost and will give you a lot of information to make decisions about your treatment. I suggest you talk to your doctor about how to handle periods of remission and what to do when the pain returns as to whether to go off your daily medication or continue to take it. I wish you wisdom to make the best choice.
I have not seen a neurologist but the doctor that I saw at Immediate Care gave me the name and number of one to call IF the pain does not get better. I am experiencing some things this time that I did not have last year. For the past couple of weeks, I have had blurry vision, especially in my right eye. When I try to read or type on the computer, the words run into each other and sometimes jump around. I have also been VERY shaky in my hands. They are so shaky that my students are noticing and I have a difficult time writing. One more thing is that I have been waking up in the middle of the night and one of my arms will be asleep. It’s a “pins and needles” feeling where I can’t even pick up a soda can or a bottle of water. With all of this other stuff going on in addition to the facial pain, I am wondering if I have something in addition to TN or if these are normal symptoms.
Maeve said:
Hi Jamie,
The first thing is, have you talked to your doctor? Do you have a neurologist or are you seeing your family doctor? The big thing about TN is that normally pain medication has limited success. That is why we are prescribed daily medication. There are many times that for a few days, weeks or even months the symptoms - the insane pain and aches disappear on their own. But more often than naught, the pain comes back and often it is worse.
Since it takes a while for the medications to build up in your system to work… it’s rough. I’m not a doctor and I can’t advise you as to your course of action regarding going to the hospital or roughing it out. I can only say if it were me… I’d look into getting myself comfortable and roughing it out and make sure to see my doctor the next day. The big thing is to RELAX and BREATHE… when you tense up - when you get emotional - it just makes it worse.
If you hadn’t read Striking Back, I wholeheartedly suggest you get a copy from http://www.endthepain.org/ It is well worth the cost and will give you a lot of information to make decisions about your treatment. I suggest you talk to your doctor about how to handle periods of remission and what to do when the pain returns as to whether to go off your daily medication or continue to take it. I wish you wisdom to make the best choice.
Hey Jamie,
You sound just as frustrated as I am, it’s hard enough having TN without people not believing you. Recently I’ve just had an issue with my GP where I just don’t think he’s workin for me to be honest and it’s hard to stick up for yourself and say “JUST HELP ME!!!” when you’re fragile and in pain. I say get help. Don’t do this by yourself.
From what I’ve seen from other TN sufferers many have had issues with doctor’s so you’re not the alone.
In the end the ER people are there for a reason, take a friend with you if you can.
Wishing you the best, let me know how you go.
Regards, Susan.
Thanks you all for your support. I just got back from the ER and they did absolutely nothing. I didn’t even get to see a doctor, only a nurse practicioner. Everyone I talked to was wondering why I even came in since I was just at Prompt Care yesterday. I explained that I was in pain and that the pain meds just weren’t helping enough. Then they said that I didn’t need to see a neurologist because my regular doctor should be able to keep it under control. The pain is now in both sides of my face and I can’t even rest my head on a pillow because it’s too painful. They did give me a note for work for tomorrow. However, my principal is already mad that I had to leave today. People who have not experienced TN just don’t understand the pain and how it affects everyday life. I am just praying that the night gets better!
Hey Jamie,
One day your boss will need compassion when she is unwell. Karma ya’ know.
I can’t believe the ER did nothing for you - just seems ridiculous to me. Can you visit your GP for some pain med’s?
Your post reminded me of a time prior to being diagnosed when I was in agony & crying on the phone to my then doctor. I can distinctly remember saying “but you’re a doctor, I thought that you were supposed to help me”. After a long pause he walked me thru his surgery and from that moment on he did. It was a shame that I was reduced to feeling in such a state that I had to do this, so I can remember the utter frustration. I send you much love and best wishes, I do hope that you can get some relief soon, x
I am so sorry for your pain and struggling with doctors. Please see a Neurologist. They are trained in this and know all the different medications to try. And go to a different hospital if there is a need. You may want to consider taking some time off to try and get this under control. Do you have medical leave? My doctor gave me Percocet which I take sometimes to knock myself out or Xanax to calm down. As I get stressed, the pain seems to grow exponentially. I just really watch not to take them too often. I hope you can find your answers to help you move forward.
With your symptoms you need to see a neurologist as mentioned by all of us. Regular pain medication is NOT going to work for neurological pain. It may mask it for a few hours, but for long term relief you are going to have to go through the arsenal of medication that those with TN use.
I’m very concerned about your pins and needles… you really need to tell your doctor about that and try to see if it correlates when your face is hurting. My best to you.
I don’t know if you have seen a neurologist yet but that is the first step. You cannot be in denial about the seriousness of this disease. Believe me I tried. I would go into remission and think that I had been cured or even that I never had TN and it was something else but it always came back. You NEED to have an MRI done!!! that is not even an option. There is a correlation of MS and TN. You need to have that ruled out.
As far as the ER goes, they are there to help you through your immediate crisis but it is up to you to get follow up gare with the neurologist. They do get frustrated whwn you do not follow up and then come back for pain meds. That is why it is SO important to get your own neurogist. Call or go to your insurance web site and look up the doctors and see if any one specializes in TN or facial pain.
Please see a neurologist. Also don’t be afraid to keep looking for a doctor that you feel comfortablw with and you feel heard. I have had MANY different doctors. Some were good, some just out right sucked. I finally have found one that understands me and what my treatment goals are and helps me acheive them. I don’t want to be on meds but at some point you have to surrender to the disease and realize that you have no control over it and quality of life becomes the most important factor in choosing a treatment plan.
Good luck,
Brogan
Maeve said:
Hi Jamie,
The first thing is, have you talked to your doctor? Do you have a neurologist or are you seeing your family doctor? The big thing about TN is that normally pain medication has limited success. That is why we are prescribed daily medication. There are many times that for a few days, weeks or even months the symptoms - the insane pain and aches disappear on their own. But more often than naught, the pain comes back and often it is worse.
Since it takes a while for the medications to build up in your system to work… it’s rough. I’m not a doctor and I can’t advise you as to your course of action regarding going to the hospital or roughing it out. I can only say if it were me… I’d look into getting myself comfortable and roughing it out and make sure to see my doctor the next day. The big thing is to RELAX and BREATHE… when you tense up - when you get emotional - it just makes it worse.
If you hadn’t read Striking Back, I wholeheartedly suggest you get a copy from http://www.endthepain.org/ It is well worth the cost and will give you a lot of information to make decisions about your treatment. I suggest you talk to your doctor about how to handle periods of remission and what to do when the pain returns as to whether to go off your daily medication or continue to take it. I wish you wisdom to make the best choice.