I still have a fairly significant amount of pain in my cheek
and jaw. For some reason it gets worse at night. Usually it fades during the
day after I started eating. Today it hasn’t gone away after I got up like it
has previous. The pain is tolerable but hurts every time I talk, eat or drink.
I’m hoping with continued use of the new medication this will be more
manageable. I see the doctor the 23rd as a follow-up.
Hopefully
I can post more on my blog. As soon as I was going to use it this morning Macy got
in my lap and prevented me. She ran off later because she saw leaves blowing
around. We think she thinks they are little birds. Silly kitty
Phil and Macy
Thursday, November 12, 2015
Trigeminal Neuralgia update
Yesterday I shared some of the problems I’ve been having. I
wanted to report that today when I woke up my right arm and hand were very
close to being back to functionality. As much as I had a week ago. Now I can
log on to my PC and do most things with my iPad. I appreciate your prayers and
thoughts.
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Hi Phil, thanks for writing these posts about TGN. I'm so sorry to hear you're having a problem with it--from what I hear it can be extremely unpleasant & really does a number on one's quality of life. I recently saw a patient with a long history of depression/anxiety & idiopathic mouth pain (probably TGN)--to the point that he had all his teeth pulled in an effort to find relief (this was about 10 years ago). Unfortunately that resulted in phantom tooth pain as well. (Sorry, this is a terrible story, but good news is coming, I promise!). Ultimately he found that a combination of Gabapentin + antidepressant (Pamelor, I think) + topical lidocaine + bedtime sleep aid (Tramadol) worked best and gave him enough relief that he could resume some degree of normal QoL. Interestingly, he also found that applying vibration to the roof of his mouth, on the alveolar ridge (which he identified as the origin of his pain), could sometimes create a numbing sensation that helped relieve the discomfort. This might be a dicey thing for you to try since I know TGN is often triggered by vibration, and the patient I'm talking about may not have had classic TGN (he had quite a few psychiatric problems as well, for example), but if you're having an episode anyway it might be worth a try. Good luck & keep posting! Dan shared the blog with me and I'm enjoying it! Thinking of you & hoping you feel better --
ReplyDeleteThank you for your input. I appreciate that my blog is read and commented on. I have over 1400 hits. I don’t know if that’s good or bad but that’s what I have.
DeleteI started out with the Gabapentin for the pain. It was a very low dose (I didn’t know it then but found out later). It took about two weeks for complete pain relief. I contacted the doctor because after six months the pain was coming back. The doctor’s office said to increase the dosage and I did. That helped a little but the pain was still coming back. I called the doctor’s office again and he told me that I was still on a considerably low dose.
The maximum dosage allowed was four times the amount I was taking. He mentioned an alternative medication that work differently. It was and anti-seizure medication and he felt it was a good alternative. I don’t remember the name it was Carbo something. I got the generic form whose name I don’t know. That was the one that conflicted with my MS. It didn’t remove the pain entirely but I only took that medication for five days before I realized it’s problem. Janette noticed the change earlier but I kept taking it. Then I called the doctor back thinking it he would say just increase the Gabapentin dose. My doctor wasn’t in and a different doctor looked at the case and switched it cyclobenzaprine.
In one of my earlier conversations with Dr. Roof he mentioned 3600 mg was the top and for gabapentin dosage. He said I shouldn’t go off in cold turkey but take a tapering dose. I did that and as I tapered off the pain became unbearable. The cyclobenzaprine did not work effectively. Dr. Roof had told me the safe dosage. Since I have quite a few pills that I can take before my visit I made the decision to increase my dosage Smewhere between 1200 and 1600 mg a day. The pain is now starting to fade. If it works I’m sure he will just increase my dosage when I run out of pills.
Thanks so much for your advice. It is good when you hear the same thing more than one source. So far the doctor, dentist and your experience have brought up the same medication. I have also used the lidocaine mouthwash that you mentioned. It brings some relief but only lasts for 20 minutes to 30 minutes. The Gabapentin in higher dosage does have one side effect. Gives me a very dry mouth and I’m thirsty all the time. It’s an easy trade-off if it works to get rid of that crazy pain.