The pain has been severe for about a month now....I'm just now getting close to an official diagnosis. I have absolutely no pain medication at all to get me through the attacks. I am a stay at home mom and the really bad episodes make it impossible for me to do anything. I honestly don't know how I'm going to make it until Friday...the attacks just keep getting worse. I tried calling to see if they could get me in earlier but the doctor is booked. =[ Any advice on how to get through an attack with no medication???
I had 24/7 pain as well as intermittent stabbing pain and I found that 2 extra strength tylenol every 4 hours would at least give me 1/2 an hour to an hour of relief. I had some Oxycodone and T3's from a knee surgery and they did not work for me. It took me a couple of weeks before I saw a neurologist and that did not seem quick enough. I am on tegritol and even though I hate the side effects, it takes most of the pain away. I am sorry for all of your pain, it is is brutal and dealing with kids is an extra challenge. Best wishes.
thanks for the reply. I am praying the neurologist will give me something for the pain. Im worrying myself a lot because I seem to be having related but different symptoms now as well. I recently started getting these horrible facial muscle spasms on the affected side with this weird click sound that seems to be coming from either the roof of my mouth or somewhere in my head (i thought the muscle spasms were breaking my bones or something...reading online I discovered something called palatial myoclonus that would cause symptoms like this). It all seems to be closely related but they are different conditions. In a way I feel better knowing that my face probably isn't breaking but it's scary because if I'm getting more than one problem from the same area...then that points to something bigger causing all of it. Ugh this neurologist appointment couldn't come any sooner. I'm driving myself crazy! Best of luck to you as well!
btw mine is more of the constant pain/numbness with some typical type pains as well but the severity worsens and lessens throughout the day
Curious questions... is the numbness on your skin or does it feel like its like deep below your skin? I was feeling that today and it was very weird... later there was pain but the numb below the skin thing is extra weird. I am so sorry you are having such a hard time with your pain, maybe you should just go to the ER I know its hard to explain to them and honestly I have never done this but if you dont think you will make it to Friday because it is so bad maybe you should just go, go and tell them you are waiting for the doctors appt. you dont know why you are in pain. You are not "technically diagnosed" with anything. I don't know I just hate to hear that you are suffering so much. I just want to think of a way to help :-/
ugh i just dont know how to explain this! i think the numbness is kind of deep. im having an "attack" as i type...it feels like tingling in some places...a few spots of pain that keep jumping around...and also like someone keeps grabbing a chunk of my face and pulling it in every direction...it feels like my face is all kinds of crazy looking and deformed...but when i check its still the same. but the numbness is all over the whole side throughout all the sporadic sensations and pains. i was actually seriously considering it last night...lol. but the "attack" exhausted me so i just went to sleep.
just a few hours ago i was getting my hopes up about going into remission...because my face felt the most normal it has in a longggg time.
This is playing mind games with me!
I completely understand the face grabbing thing! then looking in the mirror like okaaaay, its frustrating to not see anything wrong when you can clearly feel such intence pain but also lucky that you look normal ya know?
Exactly!! thank youu!!! lol I never saw anyone mention it so i thought i was crazy! I got smart and wrote down all the sensations as i felt them so i can just revise that and take it to the neurologist Friday. why didn't i think of that before...I was always trying to describe it when it wasn't there! duhh me! =P
There are many little ticks people do at home to lower the pain level a bit. Maybe a few of them together will make it bearable. in the discussions, you can type in the search box "natural remedies" and get some ideas, and this one I started is good because people added their own ideas in the comments.
That word "grabbing" is exactly how I described it to the Dr. He said "spasning?" I said "only if the spasm is going 2 directions at once, like a hand closing and grabbing."
Don't give up hope. There are remissions that last from anywhere from hours to years.
Sheila
I take baclofen for the spasms in my face. It works great…it can make u really sleepy at high doses though. As far as making it til Friday try a clothe filled with Epson salt. Heat it in microwave for a minute or so just til it is warm. Put it on ur face. The Epson salt helps me in my worst attacks. Good luck and hang in there!! We r all here fighting with u!! (( hugs ))…
Lisa26 suggested a heat pack of sorts. For some an ice pack works. Funny for me, the cold air outside is a trigger, but an ice pack will help once an attack has started. If you browse around the site - there used to be and old discussion on top 10 things to do (non medicine). Look in the face pain info tab. There might be some suggestions there as well.
Hang in there.
Elaine
in addition to meds - I have used prescription lidocaine patches and creme for great relief!
I have a long story. I’ve had this disease for 12 years and have been in your position. Sleep is the best reprieve, but lay quite and try freezing (ice pack). Also ask your doctor for a Rex for a topical crete that will help numb. It has pain med in it, lidocaine, ketamine, flexeril and neuron tin works brilliantly.
I don’t take narcotics anymore. You might try a muscle relaxer and Tramadol. Narcotics only for the worst pain.
Hope I help.
Julz
If you're talking NO meds, all I can suggest is when the pain hits, concentrate really intensely on your breathing in 2,3,4 out 2,3,4. It's not easy to do but the more you can focus on your breathing, the more you can pull your mind away from the pain. It may help a bit to take the edge off.
Dude I totally understand. Please go to the er. I’ve been several times because my pains been so bad that I can’t make it to my appt. They will atleast give you pain pills or naproxen…you can take that with 2 alive (sp) and you should feel so much better. Please keep in touch. Your story sounds so much like me!
OH boy I know how it feels to be dealing with this intense pain!!!!
I found the best thing before my pain meds started working to help aleviate pain was relax in a stress free environment (which is really hard to find sometimes lol), a hot tub works great for me, but I don't have one at home so its a rare treat when I get to use one, but heat makes pain worse for some people with TN so it really depends on wether or not heat is a trigger for you. I would literally need to get away from my kids and be ALONE, quiet time, no stress. I know that sounds impossible to do and it won't make the pain go away but it helps a bit.
I wish I could be more helpful but not much worked for me, I have heard though that 2 Aleve can give you a few hours of releif.
Most of the time I had all day episodes and it was really hard to keep living and continue on but just know that they will find a medication or option for you and you will feel relief soon. Stay strong.
I hope you feel better SOON :)
Erin
Sheila and Bri,, this grabbing feeling. Would you say it could described as a dog biting your face??