I was wanting to know how many of you are on nothing for your TN pain or how many choose not to be on anything for the pain???
I have been on many things for my pain such as Tegretol and also Endep which is a anti dep,i have had number of Morphine shots and so on.
I have now taken myself off all meds hopeing that i can do it on my own,i noticed i have more flare ups on meds then without when i have a flare up i take a large amount of painkillers with codeine in them which takes the edge off and also use alot of things like yoga and heat pack but i am worried about taking so many painkillers but at the time when i have flare ups i just will do anything to stop the pain i am tryn to cut down as i dont want to get hooked on them i do not take painkillers any other time only when i have TN flare up.
Dose anyone know what other things i can do to help with pain besides meds ???
Painkillers didn’t work for my pain…only got relief when I started tegretol. I don’t know of any natural way to find relief other than meds unfortunately. I hope you have a wonderful, pain-free day Tamina!
Hi Jamie,
yes was in so much pain when i woke up at 5:00am and nothing would help,i just sat there cryn and groaning and trying to relax but at last my painkillers kicked in and is fine now but every time i touch my head on my crown i feel pain real sharp like my hair has nerves in it weird coz i have never had that before i cant take my hair out coz it hurts to bad oh well i will kick on the are worse off then me i hope u are pain free also Jamie takecare mina
p.s if there is wrong spelling sorry PAIN dose it to me i cant think straight
I have also gotten to the point on at least 4 occasions now, where I definitively believed I was in more pain on meds than without. On these occasions I told my doctors I was taking a med holiday, and would wean off and then stay off meds for a month or so, till the pain once again became unbearable without meds, in that time the meds had cleared of my system and I would restart the medication. The first couple of times I did this, was against my doctors wishes, but they now recognise that it’s possible that once the body adjusts to taking meds over long term, that the pain signal “may” change and work around the meds. So taking occasional med holidays for me had been beneficial. Now I’m not reccomending this is the same for everyone, but I do believe the meds help. Just not continuously long term. For me, I’ve been on medication for over 7 years now. I don’t remember how long it’s been for you. But in my case anyway, I have now convinced my doctors that these medication holidays work for me.
Just my thoughts and opinions, not ratified by my doctors or anything, they just agree with me now ;-).
Tamina,
I am too scared to stop my seizure meds. I cut back on the pain meds when I’m doing okay but then it seems like it really get worse when it hits again which is usually within 24 hours. I was going to ask the neuro if it is better to take the pain meds around the clock even if you feel like you don’t need one at times.
Liz
Hi Tamina, When I was on meds for TN (my MVD seems to have taken care of the pain), my doctor and I worked up 3 “cocktails” of drugs… so that my body wouldn’t get used to the same meds. My experience is/was that as my body got used to a drug, it didn’t work as well. The three different combinations seemed to work for me! I was not on lots and lots of meds. I was so lucky to have a family doctor/neurologist/neurosurgeon who were all on the same page! I also used heated rice bags, yoga to help. My yoga practice really helped me to learn to breathe through the pain. I also am an artist and found that when I painted or made jewelry, I had a “place” to put the pain!
My mother is a prescription drug addict (she has had TN since 1995). I know first-hand the danger of mixing meds and trying to be completely pain-free! Unfortunately, I think we can’t be completely pain-free, but can hope to find what works so we can function in our daily lives!
Just to clarify ~~ these are my experiences and will not work for everyone! Don’t do it without doctor supervision!!
Hi Melodye,
im happy to hear meds are helping you, i hope for u to be pain free.
I will stick to no meds for now and take painkillers when i have pain i dont like putting meds into my body every day.takcare mina xx
Tamira, I understand! Good luck as you figure out what works best for you! Hopefully my “cocktail” med days are past now that the MVD surgery seems to be helping. I think I’m a lot like you… take only when necessary!
I have tried everything a Doctor has given me and it’s not much help. I find 4 over the counter Advil will help stop the stabbing. The stabbing last night was so bad that I took 8 advil in 2 hours(the stabbing was coming on so fast and every 3 -4 min.) which I have never taken that much Advil before but it stopped and at the time I would of done anything to make it stop. Advil is not good for you and I only save it for flare ups. Out of every med I have tried of all things… something OTC. It doesn’t always work and you have to take 4 Advil every 3-4 hours for a couple of days until you feel sure the flare up has stopped stabbing.
try vitamin therapy , look into getting some b12 shots, and ask if it’s ok for you to take 500mg of vitamin c daily. I have just started this about a week ago. I will keep you posted.