Mina,
I have used the heat and bath and breathing myself and they do at least seem to sooth the soul if not relieve the pain.
Gretchen
I initially just used heat but when it quit working I moved to ice and then a combination of the two. It just seems to be whatever works for that particular attack.
Thank you all for all of these suggestions! Reading them has been really helpful.
The goat snuggling does not seem weird to me at all! My cat seems to have a very good intuition about when I'm in pain. He will climb in my lap and purr. I like to put my face right on him. I don't know if it's the warmth or the vibration of the purring or just the psychological comfort, but it sometimes seems to help.
For people who find heat pillows help, my husband made me a home-made version by filling a pillowcase with small raw beans from the food co-op (I don't remember what sort of beans he used - lentils maybe?) and then just tying the top of the pillowcase closed. Rice would surely work as well. It is a very affordable way to make a *large* heat pillow. The beans conform nicely to awkward shapes like necks and cheeks, and they hold the heat really well; and the size means you can even sort of drape it around your neck and it will stay put. I just stick it in the microwave for a few minutes to heat it up, and every once in a while I add a few drops of aromatherapy essential oils to it. I like the combination of lavender, peppermint, and fir needle. Aromatherapy people say that sage oil is supposed to be good for nerve pain, but honestly, it's never seemed to do much for me, so I just go with smells that I like. :)
This probably sounds really weird, but sometimes I find that putting some Ben Gay -- you know, the muscle rub with camphor and menthol in it? -- directly on my face helps with the pain. Of course, though, you can't really use it on the upper nerve branch, since it's not a good idea to get it too close to your eyes. Unfortunately, that's the branch that I have the most problems with, so it's not a trick I use all that often -- only when one of the lower two branches acts up.
Recently, I've started going out of my way to look for mushy foods that aren't pure starch. It's often all I can eat, but I can't subsist on mashed potatoes and oatmeal. Recently I've been eating a lot of hummus. It is mushy, but also high in protein, which can sometimes be hard to come by when one can't chew.
Hello all ,
Im so happy sum of my tips have been able to help yous.
heat pack is my bestfriend as i have said many times lol
i dont know what i would do without it i strap it to my head lol
Mina xxx
What helps me....
~ extreme heat on my face, as much as I can tolerate
~ Electro acupuncture in a combination of facial injections (KETOROLAC, TRIAMCINOLONE, VITAMIN B12)
~ Baclofen 10mg
~ ReliaMed, portable Ultrasound
~Capsaicin cream or nasal spray
~ Oxycodone 20mg
~ sleep, sleep, sleep
The cream really eases the pain, because it burns like hell.I don't care, as long as it takes away a bit of my pain.
I personally decided not to take anymore of those other prescribed pills, they just make me weak and they are not doing me any good! Nothing has changed at all. I need to find another patch to go and learn how to listen to my body.
Has someone heard of the 'Neural Therapie' from Huneke? It is probably worth a try too.
Blessings,
Susan
thanks for sharing <3
I'm with you on the cold packs, they were a life saver for me!
Also the chewing thing was such an issue, that I was a big fan of yogurt and oatmeal for a long time (Ensure shakes were big too).
I found that Salonpa patches on your upper back and neck work great to help alleviate stress, massage therapy, and you are so right a warm bath.
I used to sleep flat with a gel pillow too, and not on either side of my face, that helped.
Thanks for sharing, its so important!
It is so interesting witch different treatments help us.
Ice packs would probably kill me, heat instead helps me a lot.
Winter time is my worst time, cold is increasing my pain so bad.
I went to the dentist this past week, and as it was before, the pain was about to knock me out. Does anybody have some advice how to handle necessary dentist visits? My teeth got really bad, because of unnecessary dental work due to my pain. Unfortunately there is always something to work on :o(
I wish everyone a great day with less pain!
Susan
I've had the same experience, many unnecessary root canals leading to an absolute DREAD of the dentist! I finally had to go in to fix a broken tooth, this time I asked for nitrous oxide (laughing gas). I don't think it stops pain so much as it allowed me to be in a relaxed state. While relaxed, I focused on my breathing and visualized peaceful scenes... self-hypnosis. It worked! I also did my homework and found the most knowledgeable and best-rated dentist in my area. It helps to look for business ratings on Yahoo and other online search engines. Often, people leave reviews about who is good and who is not.
Suzanne
Susan said:
It is so interesting witch different treatments help us.
Ice packs would probably kill me, heat instead helps me a lot.
Winter time is my worst time, cold is increasing my pain so bad.
I went to the dentist this past week, and as it was before, the pain was about to knock me out. Does anybody have some advice how to handle necessary dentist visits? My teeth got really bad, because of unnecessary dental work due to my pain. Unfortunately there is always something to work on :o(
I wish everyone a great day with less pain!
Susan
Has anyone had surgery with the cheek injections or botox?? They are suggesting this for me??
Crafting sometimes relieves my stress and relaxes me to relieve some of the pain.
I'm so disappointed right now. I got those shots who really helped me a lot. Unfortunately I got big indentation above my eyebrow from the steroid shots. Nobody really can tell me, if the indentation will ever disappear.
It is the first thing in years that really helped me so much and now I have to stop it.
Never ever give up hope, right?
I wish you all the best!
Susan
Thank you. I have found some of these things to help as well, but I never thought of the warm bath to relax. Iāll have to try that one too. Anything is appreciated!
I am new to this forum. I just was given the diagnosis on Monday. My question is, do all of you have pain all the time. I do not, but do not know what starts the pain. On Saturday, I was making a cake and feeling tired. I laid down a bit and when I got up, I felt the burning start. It progressed to hurting to touch my face, felt like I had a bad tooth ache pain in my eye and temple that felt like a throbbing brain freeze. This lasted for almost 48 hours, then subsided. Last episode was a month ago. I ended up coming home from work today starting with it again. Does this sound like anyone else?
My trigeminal pain is not a burning pain - it is sharp, quick like an electric shock shooting through your face. I did think it was a bad tooth because it was occurred during teeth brushing, eating and talking. You say you know what starts the pain - what do you mean by that?
Barbara,
One of the strange things about Atypical TN is that even though we have they same kind of pain, we all seem to be different, possibly because the nerves are compromised differently in each individual. Some of us have constant pain, only barely managed by medication, and with others the pain comes and goes. My Atypical pain started out coming and going, until it became constant.
There are surgical and radiation interventions that work well for "Typical" Type 1 patients that don't work for Atypical Type 2 patients. Neurontin and Vicodin has helped me a lot, but there's still a long way to go. I know you've just gotten your diagnosis so it'll take a little time for all this to sink in and do your research. Joining the Atypical Group here is a very good start. We're here for you, so keep asking questions.
Hugs,
Gloria
Barbara Russell Kelly said:
I am new to this forum. I just was given the diagnosis on Monday. My question is, do all of you have pain all the time. I do not, but do not know what starts the pain. On Saturday, I was making a cake and feeling tired. I laid down a bit and when I got up, I felt the burning start. It progressed to hurting to touch my face, felt like I had a bad tooth ache pain in my eye and temple that felt like a throbbing brain freeze. This lasted for almost 48 hours, then subsided. Last episode was a month ago. I ended up coming home from work today starting with it again. Does this sound like anyone else?
Hi Tamina no your not the onley one i feel like a mussled dog most of the time as i cant open my mouth that wide i find it hard too trying to eat hard food so like you i stick to the soft variety and i find it helps drinking hot tea it seems to calm it for about a 1 hour but at least that gives me time to have some reliaf . B
Kristin Forrester said:
I also use the sensodyne toothpaste and it helps a little. Does chewing foods bother anyone? I still can only each really soft foods. If I bite down on foods my mouth kills me.
Sham said:I have also learn by substituting my regular toothpaste to sensodyne toothpaste helps to minimize the sensitivity of my nerves within my teeth.
I have been diagnosed about 1 week a ago though i have had this pain now for over a month i am on gabapentin at the mo but it dosent seem to be working well i am in pain most of the time and cant really sleep because of it is there any one that know of anything that could be used in conjunction with it to help ease the pain?xx
All i can say to ypou is try not to put any pressure on yuor teeth and if it gets bad dont even pull facial expressions as as ive found evn smilling can cause it to get more intence very quickly x
Barbara Russell Kelly said:
I am new to this forum. I just was given the diagnosis on Monday. My question is, do all of you have pain all the time. I do not, but do not know what starts the pain. On Saturday, I was making a cake and feeling tired. I laid down a bit and when I got up, I felt the burning start. It progressed to hurting to touch my face, felt like I had a bad tooth ache pain in my eye and temple that felt like a throbbing brain freeze. This lasted for almost 48 hours, then subsided. Last episode was a month ago. I ended up coming home from work today starting with it again. Does this sound like anyone else?
Hello Barbara,
unfortunately I have pain all the time, sometimes it is manageable, sometimes it drags me to the ground.
It all started out with dental work, almost 11 Years ago.
I hope you will find a way, to handle your pain. Donāt let any offered treatment options untouched!Maybe thereās a way to help you.
If you have any questions about treatment options, I would love to help you with.
Iām at a breaking point right now, it seemed if tried about everything, but anyways I will never give up hope!
I have an appointment with http://www.liedtkelab.org/Home.html and I really hope, he can help me!
Maybe heās an option for lots of people here in this community!
All the best for you, and for you all here!
Susan