Hi. I'm new here and have so many thoughts and questions swirling around my head.
I have had what I thought was tooth pain or sinus pain on the left side of my face off and on for years. After seeing a dentist,ENT, primary doc and Neurologist they all agree i have TN. I've been in a bit of denial and trying to ride it out without meds because I seem to have two weeks in between episodes. (I have been taking vicodin and oxycodone for pain) Last Week I had 4 teeth worked on to rule out teeth as any sort of a trigger. Sure enough at the 2 week point the pain is back but its on the right side?! My dentist says its pain from all the injections during dental work but I know this pain is the same as it was on the left, MUCH worse than any regular post dentist tenderness. I had an MRI 2 days ago and am anxiously waiting for the results. For some reason I just want to wait on the meds until I have more answers. Im a mother of a 2 and 6 year old and I'm so worried the tegretol will make me to loopy to be a good mom. Has anyone had any luck with natural remedies or acupuncture? I was hoping to go the natural route but am realizing that the pain is too intense to handle.
Thanks for listening, I'm so happy that I found this site. It is so helpful!
If the pain has a stabbing, electric-shock character and occurs in volleys of stabs up to 3 minutes long (each) where the volley lasts up to 2 hours, then it is most likely Typical (Type I) TN. A minority of patients have this type of pain on both sides at different times. If the pain has more of an aching, burning, boring, 24-7 character, then most neurologists would call it "Atypical" TN or perhaps simply "facial neuropathic pain"
My personal recommendation would be for you to go through a short trial of one of the anti-seizure meds like Tegretol, Neurontin or Trileptal. If you get an immediate positive response to any of these drugs as your dose level is tapered up, then you've got strong evidence for a diagnosis of some form of facial neuropathic pain. The type of pain will be determined by its character and patterns. MRI even at the best available resolution CANNOT eliminate TN as a source of the pain. Many patients who have no MRI indications are found later to have nerve compressions when an MVD is done.
My MRI came back normal. My pain sounds more like typical type 1 TN.
I'm going to try the tegretol and hope for the best. In the mean time I
am running out of pain meds and so scared because the docs don't want to prescribe more. I cant imagine how they could not beings that TN is known as the worst pain known to man! They only take the edge off a bit but any less pain is better. Should I try to find a pain management specialist?
Finding a pain management specialist may be an up-hill fight. A lot of them have gone out of business because of the persecutions being worked by the US DEA and the insurance industry's unwillingness to code the time they must spend in patient management, adequately to reimburse them for their time. However, if you'll send your email address to my hotmail account (lawhern@hotmail.com) I'll do some sniffing about in your area to see who I can turn up.
Thanks Red. I will do that. I’m having the worse pain attacks do far today. It’s almost constant and the only thing that helps is if I hold cold wAter in my mouth. The pain is so bad I feel very scared. Today was my first day on 200 mg of tegretol. I’m wondering if it ever makes the pain worse before it get better? I took ibuprofen and percoset… No relief! Considering going to ER. Any advise would be wonderful!
Richard A. “Red” Lawhern said:
Finding a pain management specialist may be an up-hill fight. A lot of them have gone out of business because of the persecutions being worked by the US DEA and the insurance industry’s unwillingness to code the time they must spend in patient management, adequately to reimburse them for their time. However, if you’ll send your email address to my hotmail account (lawhern@hotmail.com) I’ll do some sniffing about in your area to see who I can turn up.
Jenessa, this may sound crazy..but when I first took Tegretol for the first several days I thought my pain seemed more pronounced. It was weird. But it got better and it started to work for me. But every time they uped my dosage I would get more throat pain. I didn't have too much throat pain when I started Teg. So I am on a different med. now. Min
You may need to taper up on the Tegretol or to be tried on another drug, Jenessa. 200 mg is truly a minimum dose. But don't take extra pills or additional meds without your doctor's consultation. Ibuprofen rarely helps with this variety of pain. Percocet helps some and not others.
If you feel you need help to stay sane, then certainly go to the ER. Explain where you are on your tapering up on Tegretol, before any other meds are added.
The pain has chilled out a bit now. I was apprehensive about taking my second tegretol dose tonight but I guess I should. I'm scheduled to up the dose to 400mg twice a day in 4 days. I hope it works!!! I noticed after taking it today my face was twitching off and on, is this a normal side effect?
Facial twitching is sometimes observed in TN patients. A slightly different nerve may be involved, but the processes and treatments are identical. Your twitching should quiet down as your pain does.
To answer one of your questions yes acupuncture works for some people. My wife for example goes for acupuncture for both allergies and TN. For her the pain goes away instantly after a few needles are inserted into her face. The pain will come back after a while but it seems that after every visit the pain gets a little less every time and the time it takes for the pain to return after acupuncture treatment is longer and longer after every visit.
I think its worth a shot to explore all options.
I saw in one of your later posts that you say having cold water in your mouth is soothing. My wife also constantly sips water to sooth the shocks. Oddly enough drinking cold water is a trigger for some people, unfortunately my wife is not able to find any triggers.
That's so great the acupuncture helps her. I'm going to look into a place to get some myself.
It is odd about the cold water. it was actually a trigger for my left side Tn and hot triggers the right while cold soothes it. I guess we all slowly but surely figure out what works and doesn't.
Thanks for your response. Best wishes!
Steve V. said:
Jenessa,
To answer one of your questions yes acupuncture works for some people. My wife for example goes for acupuncture for both allergies and TN. For her the pain goes away instantly after a few needles are inserted into her face. The pain will come back after a while but it seems that after every visit the pain gets a little less every time and the time it takes for the pain to return after acupuncture treatment is longer and longer after every visit.
I think its worth a shot to explore all options.
I saw in one of your later posts that you say having cold water in your mouth is soothing. My wife also constantly sips water to sooth the shocks. Oddly enough drinking cold water is a trigger for some people, unfortunately my wife is not able to find any triggers.