Hi all,
I’ve seen a few people talk about burning mouth, does anyone have a hot breath with this? I’m not sure I’m imagining this? My tongue hurts and always feels like it’s on fire. I had my right styloid out last year, waiting to see ENT for left, it’s taking a LONG time, been waiting over 6 moths now.
I do have burning mouth, not too badly though luckily…can’t say I’ve ever had hot breath though.
Have you tried nerve pain meds? There are some other things members have tried as well, like low dose Naltrexone, plus some people seem to be sensitive to certain foods. Here’s a link to one discussion in case you’ve not seen it:
Double styloidectomy surgery update - General - Living with Eagle
I’m sorry, I can’t remember what you had tried before surgery… 
There is something called Burning Mouth Syndrome. Foods can also trigger burning tongue.
I did a diet called Whole 30. This is a diet to reset your body and also find what food triggers you. It is a tough diet. When you look at food labels it was difficult to find things that didn’t have some kind of sugar, etc. There are ingredients that you wouldn’t think were sugar related.
I felt better. I lost a lot of weight. I did find things that triggered me. But I can’t remember how it affected my burning tongue.
I probably should try that diet again because it does help with eliminating issues but darn it when dealing with Eagle Syndrome sometimes you need your comfort food.
I will tell you something that has helped in the past. Flucanozole with the idea it was yeast related. Also, I tried Gentian Violet. It makes such a mess I didn’t use it in the house. I went out in the yard and brushed my tongue. It also seemed to help the one time I tried it.
Thanks for sharing this. I’ve never really related this to diet. I believe eagles has impacted my vagas quite a bit and for as long as I can remember I’ve had gut issues. I had 7 colonoscopy’s, last one a CT colonoscopy. I’ve severe gastric emptying. So I eat mainly a keto diet which works for me and I take precalopride meds. I don’t take much sugar at all. I eat mostly chicken and salmon and veg, a morning protein shake, no fruit. It’s very basic and nothing has changed over the years in my diet so I’m not sure it’s connected. I’m wondering if this is wrong nerve signaling in my case. It’s so strange. Perhaps it’s a complication from the first suregry on the right side.
Remember that you have thrown your body out of whack with a major surgery although it was a year ago. I have seen a lot of posts on reddit of people suddenly finding out they have Eagle Syndrome after getting Covid. I theorize the Covid damages the Vagus nerve in some people that then leads to a snowball effect.
So what might have been okay before might not be okay now. But perhaps a more likely candidate might be yeast.
I have seen some indication that surgery can exacerbate yeast problems. Does the problem disappear in a year? You would think so but who knows. If you can’t get a prescription for Fluconazole you might try Gentian Violet. However, there have been some concern about cancer causing issues with it although some say flawed studies. You might try it once to see if it does anything. Also, there can be yeast issues that are resistant to Fluconazole.
I do think yeast is part of the issue related to my burning tongue as well as Eagle Syndrome and who knows what else!
The human body is a complex and marvelous scientific thing. You will just have to try different things to see what might make a difference.
@Lemontree - The trigeminal, hypoglossal & glossopharyngeal nerves all play roles in tongue innervation. All three nerves can potentially be irritated by ES & possibly contribute to burning tongue. I’m more suspicious of the glossopharyngeal nerve more than the others based on my own experience & some issues I’ve had w/ my tongue.
Sometimes after one styloid is removed, the symptoms caused by the remaining styloid (if it’s elongated) can flare up & become much worse when they were previously in the background. I know you’re awaiting surgery #2 for the other styloid, & perhaps getting it removed will resolve your burning tongue problem. In the meantime, the suggestions @Jules made are a good place to start. If nerve pain meds or low dose Naltrexone (LDN) don’t help reduce your symptoms, then go on to the suggestions @JugularEagle made. Yeast infections on the tongue often cause the surface of the tongue to turn a lighter almost white color so that problem can be a visible one. Just be aware that gentian violet is a violet colored stain & will permanently color anything it touches a dark purple.
Yes, because gentian violet is used by mothers on themselves and their babies the internet is filled with horrors about spilling it. Thus, I used it outside with gloves on. note, most of the time i dont have a coating on my tongue but flucanozole and gentian violet have helped me. Its worth a try at least once for anyone with burning tongue as long as you know what you are getting into with it.
The reason I havent used it more often is the mess issue plus the cancer concern issue.
Any neighbor looking at me would wonder what the heck I was doing. I did it in my yard right next to subdivision road in case i spilled it. I almost treated it like a radioactive substance.
Another thing that some members have noted helped burning mouth is to swish & rinse w/ a baking soda solution several times/day. I’m not sure what concentration those who mentioned it used so that may be up to some trial & error.
Hi 
I had my left styloid out in March. Before and now after again I get burning pain on the left side of my tongue. Is usually coincides with my non-stop ear pain, like if I let my ear pain go too long without taking something my tongue is sure to be in pain.
That sounds like possible glossopharyngeal neuralgia, @ectocake. Have you gotten an Rx for a nerve pain medication to try to help relieve that? In some cases, even after styloidectomies, nerves don’t completely heal. We have a few members who are taking low dose nerve pain medication to help take the edge off symptoms that remain. @Jules is one of those people. Amitriptyline has helped her over the years.
I was given flexeril by Dr. Hackman, but it didn’t do anything. I have a follow up with him in November.
There is a possible solution but it may not be easy to obtain. I have to look at alternative scripts because I can’t take many common meds used by Eagle Suffers due to genetic reasons which makes surgery and the after effects even more terrifying for me.
This article talks about low dose naltrexone for burning mouth issues. This drug is used for off label use by many people. However, it can be difficult to get. You can try the weight loss excuse or order online. It’s is a very cheap drug because you are taking one 50 mg pill and chopping it into little pieces.
The problem with this is it takes a lot of experimentation to find out what works for you. Reddit has quite a few posts about the drug.
If nothing is working you might give it a try. It has worked miracles for some with autoimmune issues while others don’t see any difference. Some have more side effects than others just like with any drug. There is a Doctor on Youtube that calls it a miracle drug for some and explains why it can work. Has to do with toll receptors. Dr. Been
We’ve also had some discussions on our forum about LDN used for burning mouth syndrome. You can search for the posts using the magnifying glass search tool & either searching LDN or burning mouth.