I am a fellow victim of ATN for about 7 years. For the last 8 weeks the burning pain on the bottom of my tongue and gums near my molars (all right side) has been 24/7. It has made it almost impossible to sleep, eat solid food, talk, gargle or brush my teeth. Lukewarm coffee in the morning (or add caffeine withdrawal headaches to my list of complaints) and protein shakes 3 meals a day. Three meals during this time with pain, my wife’s birthday (reward the caregiver), college son’s return for a visit and dinner with vodka with one of my former players. (before ATN I coached high school football).
So I decided out of desperation I did research (current meds: Gabapentin, Baclofin aren’t working and even nerve block doesn’t work) on remedies for cold sores and canker sores. I do not have them or any sore on my tongue or gums. Well great news for me and hopefully those of you who need relief and try it. I waited for 4 days before I reported to make sure it wasn’t just positive thinking. I gargled 4 times a day: morning and after each meal; with the following mixture: a cup (8 oz) of half liquid liquid Benadryl (only available for children on my pharmacies shelf) and half milk of magnesia. It worked after the first use and has continued to work for 4 days and 10 meals. Some meals even included spices (not hot spices). I had several long conversations with friends and family. I was not totally pain free, but was down from a 10+ to a 3, Praise The Lord. I can live with that everyday and even go to a 7 and I will be happy. After I got acupuncture today I am at “No Pain” for the past 6 hours. I would gargle every hour that I’m not sleeping, haha, to keep this going for a day, week and you know the rest. Try it please. I am continuing my research and will keep you posted. It is a cheap way to get relief. Let me know if anyone out there gets help from this. I pray that you do. “Red” your input is always respected and appreciated. The pilgrimage for relief continues. Wishing all of you a better day, pain free or at least minimized. HMB
Folks, I don't like to rain on anybody's parade, but I must urge prudent caution on self-treatment. Before you use this preparation -- and especially before doing so every hour -- I think it is highly necessary that you consult with (a) your pharmacist, and (b) your primary care provider physician, both of whom should know what other medications you are using. Eight ounces of liquid Benadryl sounds to me like a LOT of antihistamine! The active ingredient is diphenhydramine, which has over 400 known drug interactions. You can look them up at http://www.rxlist.com/drug-interactions/significant-index/diphenhydramine-hcl-oral.htm.
I have no idea how much antihistamine may be adsorbed in gargling, or for that matter how one "gargles" milk of magnesia which as I recall has a relatively creamy consistency. presumably the creamy texture is thinned out by the liquid Benadryl. But I MUST urge a doctor consultation before trying this remedy. And HMB, that message is for you too.
Regards, Red.
Hey Everyone: I’m replying to my own discussion. First thank you “Red” for your comments and warning. Also thank you Jamie for your comment as well. I wanted to make a quick clarification and perhaps make “Red” feel better. I will still pay attention to his warning. First I was only joking about every “hour” that’s why I said “haha” after I wrote that. It was to emphasize how painful that burning feels. Here’s a clarification (1) I gargled as indicated 3 to 4 times a day with about 3 to 5 hours in between. (2) it is not 8 oz of Benadryl. It is 4 oz of Benadryl and 4 oz of milk of magnesia mixed together (3) I left out I then add 4 oz of warm water. Shake it up and just take a 1 or 2 oz medicine cup of the mixture for each time I gargle. (4) it is children’s strength Benadryl as I mentioned. Sorry for the confusion. I did speak to my pharmacist before I tried it and I did find the gargle on a “MD” website. I hope this clarifies things. But remember “Red” knows more than me. Plus I was acting out of desperation. I don’t want anybody to get sick or have any bad medicine interactions. So please talk to your Doctor or Pharmacist before trying. In the future I will make sure I put warnings before I describe a “home” remedy. I had good intentions. It was a desperate act by a fellow sufferer to help other sufferers. I apologize to all. HMB
Jamie, I was just writing you again when I read your comments. We are obviously on the same wavelength frequently. Lol. Please check with your Doctor and pharmacist before you try it at all. I also hope and pray you never have the pain or need for it again. The last thing I would want is to cause harm to you or anyone else. The old adage of “no good deed goes unpunished” really got me worried about you and others. I have no idea how I have survived these past 8 weeks. Most likely it’s my spirit that refuses to give in to the pain and give up. Everyday that I can communicate to others and see and feel the beauty of life reinforces my spirit. If I can help one person survive their pain for their family and friends than my day and purpose is fulfilled. Somewhere in my experience I keep hearing the phrase “God has put us on this earth for a purpose and until we serve that purpose we remain here.” Maybe the pain helps me fulfill the “reason that God has allowed me to inhabit this world.” My Grandmother always said “life ain’t fair.” I always told my children and players that “if it don’t kill you it makes you stronger.” Somehow all of those philosophies have come together to shape my life and direct my journey. Life is a marathon not a sprint. God bless you and thank you for being a friend. Someday I’ll disclose my other illnesses but for now I’m good focusing on this demon which I think is the root of them all. It’s like the question “which came first the chicken or the egg.” Feel better and have a great weekend. I may go back to gargling with Vodka, but I always seem to swallow it. Lol. HMB
Thank you again Jamie and a great verse from the Bible. Wishing you also a peaceful night. My prayers are on my way to you and your whole family. Your daughter gains strength each day she spends with you.
Our favorite meds
AND
Here is our favorite oral and topicals…
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-instant-help-for-pain-now-topical
Your little mix to help the burning is interesting. Could you post the link to the MD site so I can further investigate?
To share an added help that may work if your doc and pharmacist agree, is a product called Cepacol, its for sore throats. It contains a small amount of benzocaine, also found in the numbing gel dentists use to numb your gums before the shot of novocaine. Cepacol seems to act quickly on the higher level mouth burning that comes during the day. Usually Neurontin is helpful with the burning, but not when it gets up there. Using a sore throat lozenge is probably not the best idea, but it works in a pinch. The effects last long enough to forget about the burning pain and get busy with something else.
Red, your comments on this is more than welcome :-)
HMB, I just wanted to say, your reply and writings about Red's concerns are excellent. As Moderators, we are often attacked when we are only trying to help members. It is truly a refreshing change for a member to take onboard concerns proffered. Thank you. I hope your relief lasts a long time :)
Dear HMB,
You must try r-lipoic acid. 300 to 600 mg a day. This has been a life saver for me, if only it would work on my TN to go away.
Sue
Hi. I am new to all this ,only 8 months in (seems a lifetime). I can get burning tongue,and my gums ache/hurt/burn. Is this die to ATN or nerve injury,or is a nerve injured during extraction with infection the reason ATN started,if indeed it is ATN. I cant find the original posts i replied to .
Hi Barbara, welcome to our group of fellow suffers, I wish you did not have to join as a victim. It is impossible to answer your questions since I am a victim of ATN and no ya physician or neurologist. You may want to send your questions to Doc “Red”, Richard A. “Red” Lawhern, he is more adept at giving you more technical and professional advice. However, I can provide you with my answers based on my experience. Absent an MRI and an informed neurologist’s opinion, your description of your pain triggers and areas as well as when they began, my experience says you have ATN. My similar 24/7 pain began after a root canal surgery. In fact when you read many of the discussions on the website, both TN and ATN arise after oral surgery or jaw and teeth injuries. I spent 2 years seeking a diagnosis after my root canal before I was diagnosed with ATN. I suggest you search our website for knowledgeable neurologists where you live and get an MRI and a professional diagnosis. Also buy the book “Striking Back!”, you can get it with the website. Good luck! HMB
Barbara and HMB:
A couple of thoughts, if I may. Although the most common presentation of both forms of TN is on one side, about 20% of our members have TN pain of different character or at different times on the two sides. Burning Mouth Syndrome also occurs, though somewhat less often. The distinction between Atypical TN and nerve injury (trigeminal neuropathic pain) isn't always strong and the treatments used in these two forms of pain are highly similar. Although quite a number of patients attribute their ATN pain to neurological injury during root canal or dental extraction, a cause and effect relationship isn't always obvious or certain. Many cases of both Typical and Atypical TN seem to emerge spontaneously and for no discrete "reason". That's why some cases are called "idiopathic". In other cases, physicians theorize that the emergence of facial pain after a dental procedure might be a matter of simply stimulating a pre-existing vulnerability.
Confounding this whole picture is the reality that although many cases of Typical TN are associated with vascular compressions, TN itself is rare, while the compressions are observed in perhaps half of the US population. We don't know definitively why volleys of electric-shock pain seem to "come out of nowhere" in less than one in 5,000 people. As follow-up reading on these questions I recommend the TN Fact Sheet at the US NINDS, which is linked from our main page.
Go in Peace and Power
Red
Thanks red for your reply.I had infection under tooth before extraction.My pain started a little after,and got worse,and changed,and travelled,then the 'face ache' began on 5th april ,some 3 or so months after extraction.I had face pain before which was associated with 3 bouts of dry socket,which later showed on the mri as 'sclerosing osteitis',to this day i really dont know what it is,and neither does my doctor.One doc says inflammation of jaw bone,and infection,and the other proffessional says its dry socket which only occurs within days of an extraction. So am no wiser as to what that is. All i know is on a daily basis my pain changes,today i have the pain 'slightly' in my face.My top right side gums are burning a bit,and they feel kind of odd,like numb,but not numb,does this make sense.Lol it probably sounds right to us,but not to anyone who isnt in this pain. My palate also hurts. Anyway thanks for your response,always appreciated .
hi HMB. i wish i wasnt a victim too,i sometimes look at pictures and think 'i was pain free then',but i guess at some point you stop doing things like that. I am better with things,but constant pain can be tiring,and when your at work,its hard for me to have an off day (as you do) because no one understands.I dont mean that in the derogatory sense to my work friends,i mean it in the way that they cant understand because they havent got this pain. So i get on with my day and hope for the best. On bad 'face ache' days i now put voltarol cream on my cheek,i dont know whether im meant to but its not done me any harm,and i use dragon balm which has that hot pepper thing in it,capsacacin or something. The thing i cant deal with is the real dry mouth caused by nortriptyline. Omg my mouth is sore cos im trying to make saliva,so instead i chew or suck sugar free gum. Anyway off to do burnt offerings AKA dinner,many thanks for your reply. Barbara
HMB said:
Hi Barbara, welcome to our group of fellow suffers, I wish you did not have to join as a victim. It is impossible to answer your questions since I am a victim of ATN and no ya physician or neurologist. You may want to send your questions to Doc "Red", Richard A. "Red" Lawhern, he is more adept at giving you more technical and professional advice. However, I can provide you with my answers based on my experience. Absent an MRI and an informed neurologist's opinion, your description of your pain triggers and areas as well as when they began, my experience says you have ATN. My similar 24/7 pain began after a root canal surgery. In fact when you read many of the discussions on the website, both TN and ATN arise after oral surgery or jaw and teeth injuries. I spent 2 years seeking a diagnosis after my root canal before I was diagnosed with ATN. I suggest you search our website for knowledgeable neurologists where you live and get an MRI and a professional diagnosis. Also buy the book "Striking Back!", you can get it with the website. Good luck! HMB
barbara said in part:
... .I had face pain before which was associated with 3 bouts of dry socket,which later showed on the mri as 'sclerosing osteitis',to this day i really dont know what it is,and neither does my doctor.One doc says inflammation of jaw bone,and infection,and the other professional says its dry socket which only occurs within days of an extraction. So am no wiser as to what that is....
So-called sclerosing osteitis is described as follows: "Increased bone deposition due to inflammation. This can be associated with either reversible pulpitis or irreversible pulpitis. It can also be associated with areas of inflammation such as periodontitis." [end citation]
If X-rays indicated a bone buildup, that might have been the basis for using this diagnostic label. In some sources the problem might also be called "condensing" osteitis. It's not clear to me whether either label suggests a definitive treatment other than antibiotics to deal with the initial infection process that generated the pulpitis (inflammation and infection of the pulp within the tooth).
Dry Socket is something quite different, immediate and not involving bone growth. It results when the blood clot disappears prematurely from the jaw bone beneath a fresh extraction site . Treatment comprises removal of any debris and daily packing of a special paste into the socket, to promote healing.Regards, Red
Thanks for the link cleo. Have saved it and will read the info....
Cleo said:
Valid Info on Trigeminal nerve injury related to dental procedures.
http://trigeminalnerve.org.uk/research/research-focus/
barbara said:Hi. I am new to all this ,only 8 months in (seems a lifetime). I can get burning tongue,and my gums ache/hurt/burn. Is this die to ATN or nerve injury,or is a nerve injured during extraction with infection the reason ATN started,if indeed it is ATN. I cant find the original posts i replied to .
It's exciting to hear about any "new" form of treatment that has positive results for someone.It's also great that Red and the mods urge caution as i know we have had members and fellow sufferers die from mistaken overdose or bad drug combinations.Benadryl works really well for me,but i have high blood pressure and use it very sparingly.
Don -- If you know of any member who had died of mistaken overdose or drug combination, I'd like to hear names. I'm not aware of anyone and I'd like to pass condolences to family.
Regards, Red
Red,I saw it on a TN facebook page some time ago.Perhaps i can investigate and come up with the name for you ,but it's been some time ago.
Richard A. "Red" Lawhern said:
Don -- If you know of any member who had died of mistaken overdose or drug combination, I'd like to hear names. I'm not aware of anyone and I'd like to pass condolences to family.
Regards, Red
thanks cleo. That link you sent about TN and research,that is the lady i am off to see. So am hoping for very positve results.......