:This is not the worse pain I’ve had, but it is really bad and it won’t Quit! It’s 5:00 AM and I’ve been up since 2:00 with bad dry mouth and afraid to close my mouth for fear that my tongue will touch something on the inside of my mouth. I’ve tried to squirt some water in there and my tongue reacts. I’ve got to take my meds at 6 we’ll see how that goes.My Doctor is moving and my new doctor has an appt set for Oct the 4th. My doctor is an MS specialist and I hope she’s knowledgeable or refers me to an TN specialist. I’'m definitely going to need some sort of procedure or surgery done. This is now the second in a row with this terrible pain and it’s clearly getting worse.
Any suggestions
Has anybody gone to the emergency room while having these pains?.. to what end?
Hi Moody65
I’m sorry you are in so much pain. I can say without a doubt that I have been there. If it is intolerable then you should try the ER. I have gone a few times. I will say that it is not the best place to get help but I have found that if they can give me something to knock me out for a bit that sometimes it can break the pain cycle.
Are you able to see a DR sooner then Oct? Maybe if you call and let them know how much pain you are in they can get you in sooner? Do you have MS as well? I just ask because that can affect what types of procedures are offered to you.
We are all here for each other. Feel free to ask anything.
Jane
It’s midnight here and I feel your pain. My top and bottom teeth hurt so bad I want to cry but know that will make it even worse. Hoping my meds kick in so I can sleep. Sometimes when it hurts like this I won’t get any sleep. I personally feel the mouth pain is the worse of all my pains. I try not to move my jaw cause it feels broken and the pain will shoot into my teeth. I have gone to the ER for this pain and they always been able to reduce the pain. It’s mainly steroids with a pain killer. Mainly they try to knock me out and hope they gave me enough steroids the nerves will settle by the time I wake up. I am not to the point of going to the ER but if you can’t take it any longer then go! I was having a bad flare day and was trying to catch up on work I took my meds real late. Now I pay the price. I hope for better days for you.
Hello Moody65,
I’m sending you my history with TN and ATN in hopes that it will help you and maybe other’s on this forum. I have had ATN for almost 2 years. Nothing was found with an MRI. Tegretol and Trileptal were prescribed and they nearly killed me by sapping all of the sodium from my system and made the pain worse. I ended up in the Hospital with Hyponatremia from taking them. Just a warning about these drugs - not everyone is affected, but it’s best to have regular blood tests if you are taking any powerful drugs long term. While on Tegretol and later Trileptal, the pain went from sometimes level 7 to 10+ with attacks for many hours of unbelievable pain once or twice a week. I was only allowed 2 Hydrocone a day last year. When in the hospital, they took me off of these drugs and the pain immediately went down to varying between level 5 & level 8 and have remained that way ever since. You sound like you may have Type 1 TN - very painful. So sorry… Mine started that way. There may be a long wait in the ER, but sometimes they will help. For dry mouth I HIGHLY recommend XyliMelts. They are little round pill-like things that have a miraculous adhesive on one side so you can glue them to your teeth. I find they work best on the upper back teeth. You can whittle them down a little if you have small teeth. In your case, though, it sounds like you can’t even brush your teeth without pain. I couldn’t brush my teeth for the first 2 weeks, but the pain changed and I could at least brush my teeth after that, even before I saw a neurologist. That’s one of the big problems with this condition - it changes constantly. This may not help you, but I discovered recently that if I chew gum or just roll it around in my mouth, the pain is reduced considerably. I suspect, though that in the beginning I probably couldn’t even chew gum. If you have teeth pain, be warned that many of us have teeth pulled out and later found out that it was the TN and not the teeth. I was one of them. Your GP might be easier to see earlier than a specialist for this condition and they can prescribe Oxycodone and Lidocaine until your appointment with the neurologist. Mine not only did that, but must have called me at home 5 or 6 times in the first week just to see how I was. They know this is a very serious condition. When in the hospital I was given Oxycodone every 6 hours and I was nearly pain free. Later they tried all kinds of anti-depressants for the pain which didn’t work for me. Now I’m only allowed two 5 mg a day of Oxycodone and the pain is back. But I will never give up trying to get help. I am now seeing a special type of chiropractor who has helped others with TN and ATN who referred me to him. This type of chiropractor is called “Upper Cervical”. If the neurosurgeon finds nothing with an MRI, this type of treatment might help. Here’s a link to his website - he may be able to refer you to a similar Dr. in your area. http://revivepittsburgh.com/ He is also on facebook where there is a video that explains why TN and ATN can sometimes be caused by the misalignment of the neck. Dr. Bulow also has a video explaining about his treatment of TN on Facebook. It’s the 19th one down on his page. Search for “Revive Upper Cervical Chiropractic” on Facebook. I hope some of this can help you.
I can’t say anything really helpful. All I can say is that I hear your pain & desperation & I wish you strength to endure.
Sandy and Moody65:
We all can emphasize with you as we all have been there. Moody 65: if you have TN-1 (Used to be called “typical”) where you have the intense pain then a short period of relief only to be followed by more lightening like pain with any movement of your jaw, IMHO the best course of action is the MVD. This is the only surgical procedure that may lead to a cure since it remedies the source, namely, the vascular compression of the Trigeminal nerve. UCC, or Upper Chiropractic Care as Sandy mentioned is certainly worth a try but, like everything else, works on some but not others. Just make sure it is a UCC specialist and not just any Chiropractor. Also, Sandy, if no compressions are shown on the MRI you must make sure that the very special MRI protocol was used or the compression wont be visible. If none show up that still doesn’t mean that there isn’t a compression. I had an MVD and awoke from anesthesia totally pain free. Unfortunately for me the pain returned after 4 years. Went on the usual meds, Tegretol, Baclofen and Gabapentin which controlled things except for flare-ups. Then, suddenly, about 11 years ago I went into remission and I am still pain free with the very occasional flare. I weaned off all medications. However, that doesn’t mean I have stopped trying to help others. I stay very aware of anything going on with TN and FP and I am the Support Group Leader for the Sacramento, Ca area. Sandy, you are very correct that Tegretol can lower your body sodium content but mine was nowhere as severe as yours. Also, anyone on Tegretol or the other seizure meds should have routine liver enzyme tests via blood analysis. This class of drugs can cause havoc with them. Best of luck to bothe Sandy and Moody65 on getting some relief…Allan
Thank you both Alan Ennis and Sandy I appreciate your input both of you, that information will be very helpful, I know I need an MVD and the information you gave me alongside it that it’s not just a chiropractor will be very helpful I’m changing my neurologist right now because my neurologist is moving out of state and this information will help guide me to help them in giving me the right procedures again thank you very much and I’ll keep you postedneurologists
Thank you justjane, I did go to the hospital and they gave me Neurontin : / which I did not take because they started me on that stuff when I first started experiencing these pains and it did nothing. However I did start taking my Carbamezapine 4 times a day instead of 3 and the pain has subsided and I’ve been able to sleep.