I truly understand each and every comment other than the surgery. I have been on tegretol, gabapentin and some other stuff. Cant remember it. The meds seem to work when there is no pain but when the pain hits, it is the worst pain I have ever experienced and I have had migraines, natural birth to a 9lb 5oz child, open abdominal surgery 2x's within 3 mos, and I promise nothing I have experienced compares to this type of pain. I am trying my hardest to get the doctors to understand the pain and they think everybody is addicted to drugs. I struggle taking pills and if doctors try to experiment on me with medication, then I refuse to take it or fill the prescription. Even on medication I have to be able to function to maintain my lifestyle by not becoming homeless. I am trying to convince my doctor, I want surgery as an option and not all this medication that apparently does not work.
SO HAPPY FOR YOU!!! hsisk2013 :)
I was one of those who hated taking pills/drugs especially daily ones!!! Except of course vitamins, lol.
BUT....I couldn't imagine not having my daily Gabapentin, whew!! And my muscle relaxers and T3's for when I truly need them!
My Neuro first gave me Tegretol but I had an allergic reaction, which was a bummer because it is supposed to work the best, but Gabapentin has worked pretty good, I just have to remember to up the dose for fall and winter when the Chinooks come in Calgary in the winter which are brutal!
I have had the TN for 4 1/2 years and I'm only just coming out of denial. I realize now that it's here to stay and with this site I feel like it'll be ok.
So glad your Dr. was kind!! Thank God, now you will have some relief, you poor thing!!
That wind was crazy! This morning I woke up feeling good and calm and noticed that all was "still", no wind!
Tired but who cares, I was able to do a bit of shopping and a few things around the house with minimal pain!
Today can be a NO PAIN day, Yahoo!!!
Take care,
Cheryl
hsisk2013 said:
I am super happy to tell all of you that I went to my regular doctor this morning and she thought it was ridiculous how they refused to give me pain medication. She could tell I was in awful pain because I kept holding my face when I talked & I just broke down and started crying. I couldn't help it. She was very nice and she gave me a prescription for oxycodone & SHE IS SWITCHING ME TO TEGRETOL! I am stoked about this because I have been begging my neurologist to change it for quite some time now. Tegretol is supposed to be very effective for treating TN so I am hoping and praying it gives me some relief. Cheryl, the weather change definitely hurt me today. The wind would blow & bam there is the horrible shocks that last about 10-15 seconds but it seems forever. I was so excited they changed my meds & I wanted to tell all of you that because you all have been very helpful.
Toni, I hear that!!
My Dr. is obsessed with getting me on Antidepressants for Fibro pain, I keep telling him that I can live with the Fibro and the arthritis but not the TN or the TMJ. He just doesn't get it, I had a Dr. treat me like a guinea pig until I switched Dr's. I told this guy that these Antidepressants mess me up big time, not going to go on that rollercoaster ride anymore!!!! I feel like we have a game of chess everytime I go there but he is still giving me the Flexeril which he doesn't like but it's what helps me. I'm kind of afraid to try the opiod based pain meds and I'm sure he wouldn't give them to me anyways. I have been told that there is no surgery, now I'm thinking they might mean there is none in Calgary. I intend to find out and weigh my options because all these meds cannot be good for the body long range.
I'm on AISH now and it's such a blessing because Gabapentin makes me unbalanced (I walk like a little old lady) hahaha
and a little slower in the head, if you know what I mean. :)
Best of luck!
Cheryl
toni said:
I truly understand each and every comment other than the surgery. I have been on tegretol, gabapentin and some other stuff. Cant remember it. The meds seem to work when there is no pain but when the pain hits, it is the worst pain I have ever experienced and I have had migraines, natural birth to a 9lb 5oz child, open abdominal surgery 2x's within 3 mos, and I promise nothing I have experienced compares to this type of pain. I am trying my hardest to get the doctors to understand the pain and they think everybody is addicted to drugs. I struggle taking pills and if doctors try to experiment on me with medication, then I refuse to take it or fill the prescription. Even on medication I have to be able to function to maintain my lifestyle by not becoming homeless. I am trying to convince my doctor, I want surgery as an option and not all this medication that apparently does not work.
Cheryl, to answer your question earlier, I take Trileptal...oxcarb...something (anti-seizure). It does help, not very much but I'll take it. I take an anti-depressant, but have for almost 30 years as I have constant depression & hubby must pull me up out of a hole if I stop (of course I've tried stopping a number of times). I was injecting Enbrel for the psoriatic arthritis weekly for 5 years, it helped control the PSA, but had to stop due to it lowering my immune system too much (always getting sick). I've tried most all of the TN meds, but cannot tolerate them or the side effects. The hydrocodone helps, but now I need to take it too often so docs want me to move to an extended release type of pain med.
Wishing all of us the best...this is such a tough fight.
Pam
The extended release pain meds work really well. Once I found the right dose (you always start at the lowest dose because of the risk of it affecting respiratory rate), I rarely needed a rescue med for breakthrough pain. And when the pain is there almost constantly, it is much better to have a steady blood level of the med that controls the pain...rather than having to keep taking pills multiple times a day and your blood level going up and down. Studies have actually shown you use less drug this way (mg for mg). Of course, these are also the formulations that the junkies love to abuse...so be careful with your meds and who knows you take them!
Wishing you the best and successful pain control :)
Liliacatnap said:
Cheryl, to answer your question earlier, I take Trileptal...oxcarb...something (anti-seizure). It does help, not very much but I'll take it. I take an anti-depressant, but have for almost 30 years as I have constant depression & hubby must pull me up out of a hole if I stop (of course I've tried stopping a number of times). I was injecting Enbrel for the psoriatic arthritis weekly for 5 years, it helped control the PSA, but had to stop due to it lowering my immune system too much (always getting sick). I've tried most all of the TN meds, but cannot tolerate them or the side effects. The hydrocodone helps, but now I need to take it too often so docs want me to move to an extended release type of pain med.
Wishing all of us the best...this is such a tough fight.
Pam
Go to another GP/Neuro immediately. I remember the very first time I saw someone about mine, I was given panadeine forte!!!! If I hadn't been so scared to laugh for fear of setting off the TN, I would have just laughed. You have a right to be pro-active in your own healthcare. Someone who refuses to provide meds for TN/Facial Neuralgia is either.... not a real doctor, thinks you are med shopping, doesn't understand pain, doesn't care. Keep going until you find someone who WILL help you. You have that right. :)
Ah, I commented a bit late! I remember when I first took Tegretol... pain the morning by the afternoon, gone. I never got used to the brain fog... but I thought that drug was nothing short of a miracle for terminating that pain so quickly! :)