New here, in pain, afraid & unsure of condition

Welcome New Member Introductions
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Hi everyone, first I want to tell you how very grateful I am to have found this group.

I’ll describe my experience with the hope that someone might have any suggestions on what I might have and any thoughts on what I can try next to relieve the life-impacting effect of this condition.

Onset and symptoms: In early October 2017 I was very stressed out about a few life/work situations. I noticed that I seemed to have a sore throat and a constant deep pain on one side of the base of my tongue (left side). At some point I became aware there was constant pain along the length of the left side of my tongue. Some days it seemed to radiate to my left ear for hours at a time, producing a deep ache and hot flushed feeling. Some days the pain in my tongue seemed more like a hundred little cuts and spread all over instead of just the left side. Sometimes, though rarely, the pain in my throat feels it’s in the middle or even on the right side of my Adam’s apple, but otherwise it’s higher up and on the left side 95% of the time, and seems to stem from the base of my tongue (?). Some days the pain in my tongue keeps me up most of the night. I also have a recurring pain above the molars on the top left side that comes and goes. None of these pains have been sudden and jarring; they are steady. It’s continual pain, but some days feel worse than others. I think the pain has fluctuated slowly between a 2.5/10 on the best days to a 7.5/10 on the worst days, for hours at a time, up and down unpredictably. Most of the time it’s around 5.5/10. It’s been over 3 months now.

Medical checks so far: My family doctor is extremely passive, so the exploration process has been very slow. (In fact, going through this, I realize I have to continue to try to find another doctor. I am absolutely stunned by how passive she is.) I insisted on a neck ultrasound; this came back clear. I also insisted on an ENT referral (6 week wait). Since my doctor gave me zero information, I became quite distraught and ended up going to Emergency on 3 occasions – there they did nothing and told me to wait for the ENT appointment. The ENT (who, incidentally, has a great reputation) did a scope and saw nothing. He ordered a CT scan “to be safe.” I asked for an MRI but he said that would only slow things down (it takes many months in Toronto) and a CT scan would show anything urgent. The CT results came back clear, and the ENT said there was nothing more he could do from an ENT perspective. He said maybe I’ve got a pinched nerve somewhere and I could try massages etc. I got another referral for an ENT (with a bad reputation); he took a quick glance and said he saw nothing and I should get a night guard for my clenching/grinding. I went to the dentist and had two old root-canaled molars (top left side) crowned – the top left set of my molars have always been problematic, with root canals and pains that come and go, but dentists don’t see anything in x-rays. I also had impressions taken for a night guard (but problems there; the dentist had to do the impressions 5 times and I still have no night guard). I saw a chiropractor so he could order x-rays of the area; should have these in the next week or two. I also made an appointment with an osteopath. I insisted that my GP refer me to a neurologist; waiting to hear back about an appointment but I fear it could take months.

Where I’m at now: It’s been over 3 months with this. For a while there, I developed crushing anxiety about it, but I think I have gotten that under control. I have been struggling hard to keep depression at bay, keeping busy. I’m always distracted by this, so I can’t do much that requires steady concentration. I’m worried this is going to get worse. Any insights at all would be very deeply appreciated. Thanks very much. Wishing you all a pain-free day.

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@canada2018 I’m new here as well, but unfortunately I’m not new to facial pain.

Have you looked into Glossopharyngeal neuralgia? You might just read a few articles and see if it resonates with what you are experiencing.

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HiDawn, thanks so much. Yes, I was wondering if this might fall under glossopharyngeal neuralgia. If so, I would guess it would be the “atypical” type since it isn’t sudden shooting pain but constant. (I am terrified it’s going to get worse.) I will do some more reading about this. Thanks for the suggestion. I hope you are having a good day!

By the way, I’m wondering if there’s a way to search for posts by a specific member. So far I haven’t been able to find a way to do that here.

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I’ve only been here less than two weeks, so I might be wrong but I think you can click on their profile and it will list their posts and comments. You can use the search tool (in the green ribbon next to your icon) and type in the user name, at the bottom of the search results list it will show their icon and take you to their profile where their posts and comments are listed. Hope that helps.

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Hi canada, sorry to hear that you are having such a tough time. I have had similar issues for going on 2 years now, but have found ways to cope with it. You will have to be more assertive when dealing with doctors unfortunately, very few will give your condition the attention it deserves, and often times they don’t have good answers.

I would encourage you to do as much research on your own as you can, reading through the website, old posts, is a good start. You never know when you’ll find a nugget of information that is extremely helpful.

Here are some things that I think might be helpful based on my experience. I also have unexplicable tooth pain, as well as burning and numbness on the left side of the tongue, and tightness/achiness in the lower jaw. Your trigeminal nerve does sound very irritated, and you want to get it to settle down as much as possible.

I would start by keeping a record of your ups and downs and see if you can discover things that both hurt and are helpful. For one, I found that alcohol always made things worse and I’ve become a non-drinker. OTC pain meds don’t help much, and always give rebound pain, so I avoid them. I work very hard at eating well, getting good sleep, and that always makes for a much better day.

I would encourage you to pursue a good mouth guard–that has been a godsend for me. It “distracts” the nerve enough to settle it down, and helps a lot with pain at night so I can sleep. For a long time I used the cheap OTC ones, but I found an online source that made me a good, soft acrylic one that I really like. The hard acrylic ones can also be worn during the day, might be really helpful if you have to talk a lot. (My dog keeps stealing mine, so I haven’t had a good trial of it). And obviously if you are grinding your teeth, that is not helpful for the nerve or teeth.

Since you have just had two new crowns, you’ll want to make sure the dentin on the edges is sealing up well. I use a product called Sensi-stop–it is a bit irritating the first day, but after that helps a ton with tooth sensitivity. I also use sensitive tooth toothpaste, a flouride mouth wash, and eat lots of spinach, which all help seal the dentin. Take scrupulous care of your teeth, using floss or a water flosser.

I also had a period of time (a couple of months?) when I had problems with “burning strips”, and tightness on my palate and throat. I found that a topical clonazepam was very helpful for this–one pill (25 mg?) dissolved in a bit of water or heavy cream (sticks) and swished around in my mouth, or applied with a swab. I eventually figured out that opioids seemed to be making this worse and quit them, the problem went away.

If you keep looking and trying new medicines and solutions, you will eventually find ways to cope with the pain. And chances are extremely high that you will heal from this, very likely within months. I sincerely doubt things will get worse if you take your time and don’t go into any rash treatments.

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Ziggy, I can’t thank you enough. Once again I am in tears reading these helpful and positive words. I will try absolutely everything you suggest and will report back.

For now I can say I have also stopped taking OTC meds because they seemed to make the pain worse the next day (not sure they helped in the first place) and I never drink, so that’s two items covered already. I am supposed to pick up a mouth guard later this week and I am praying it will help. My family doctor hasn’t prescribed any meds for this at this point. I’m wondering if I should ask for an antidepressant while I wait for a neurologist appointment (which I realize could take many months, now that I’ve conferred with my wonderful fellow Canadian ellen5 who is on this forum).

A million thanks, ziggy. I will jot down everything you’ve suggested and follow up. Wishing you a wonderful night.

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Sorry you are hurting. I understand daily pain. A mouth piece that stabilizes your jaw will help with mouth pain and keep you from grinding or clenching at night. Amytriptline is a first line old antidepressant to help with nerve pain. Must start it slow 10mg, at night, your body has to allow time to build up. I use klonipin which calms my nerve down. I also work with a neuro muscular dentist who has made my orthotic for TMD. I’m missing 3 teeth due to this, so my bite is way off . another reason we can be in pain.

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Thank you so much, Ajb. Are you using klonipin topically and nothing else, and how are you doing now? Wishing you a happy pain-free day!

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We’re glad that you found us too, C. There’s nothing like having people who understand to help you get through a rough spot. A cure for your symptoms would be better, but failing that, good company is good for the soul, isn’t it?

I hope that you get some answers too, although I fear that you may be correct about getting a neurology appointment taking months for something that is only urgent to you, as opposed to “medically urgent”.

All the best to you

Seenie from Moderator Support

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Thanks for the encouraging words, Seenie. It is most definitely helpful to have a community of caring, knowledgeable people around – truly what a treasure to stumble upon! :slight_smile:

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Hi, I use .25 klonipin in the morning and .5 at night. I have a compound with Amytriptline, lidocaine and one other thing, I rub it in my sore area. The only time it doesn’t hurt is when I’m sleeping

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Ajb, sorry to hear you still have pain. It sounds like you’re only going with topical painkillers for now, is that right? I imagine you must have tried many other medications. I hope you can find something very soon to relieve the pain. I hope you have a good night!

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Yes, have tried lots of things. Going to a new Neuro in 2 weeks, maybe she has some magic in her bag. Have a great night

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Oh I hope it goes very well, Ajb! May you find some great new options there!

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Dear Canada - So sorry to hear what your going through and I understand as symptoms seem so much like mine. It does sound like an atypical facial neuralgia and You definitely need to be evaluated by a neurologist. I had to try quite a few meds before I found what helped somewhat. At present I take tegretol 4xday and neurotin at night.I found that if I sleep on my right side the pain is not as painful! My neurologist said sometimes this will just go away by itself , so I am waiting !! Keeping all of you in my prayers. vicki9

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16

Salam,

When you look in the mirror,do you see any micro-swelling in painful face side?

do you feel any micro fever?

how is your blood pressure when the pain is in the peak?

is your pain has burning feeling aspect?

how often is it accompanied with headaque? if applicable, in which part of head?

did you tried any pain killer ,which one,how was the result?

if you do physical activity,how you feel in low load,medium load,high level load?

did you pass any depression before,how long?

in your daily life,do you pass from very worm to very cold environment.

had you before long teeth inflammation.

when you run in cold weather ,while breathing,do you feel any pain in a nose side?

Till receiving your answers,i would advice you keep a minimum of sport(at the load that you can resist) in daily basis,and grow up the load very slowly,your body will start to repond,and you will have a very notable amount of natural pain killer,and it helps you to develop the courage to face your situation.

beautiful things comes from painful times with patience.

best regards

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20

Hello Canada,

My grandfather was born there! Okay so I have had some experience with this and many doctors don’t tell us about Candida that causes a lot of tongue issues.

So 6 months ago I had thrush in my mouth that turned into glossitis. Much started for me from a never ending Urinary track infection which makes clear & tests proved my body had overgrowth of Candida. I have had issues since young with Candida and seen specialist as having antibiotics causes what we all have in our bodies “yeast” to get out of control with every round of antibiotics. Having had multiple jaw surgeries all my life I have always been prone to candida related infections. It also leads to psoriasis.

Candida is not prejudice so it can affect anyone. Health immune systems fight it better but stress brings it to forefront.

When the body is stressed if you have had antibiotics for anything it takes typically a year for the body to get back a normal balance of good healthy flora bacteria in normal conditions.

So when I had thrush a Throat culture takes 2-3 weeks to show growth and confirm so my primary Dr treated it while I waited to see the ENT. Since thrush is transferable where glossitis isn’t both are awkward and painful with no idea when it will go away or come back.

Having a lot of surgeries in the mouth/face area because of bacteria people are given antibiotics to prevent infections not because of one being present. Dental work that is invasive is no different antibiotics may be prescribed and many don’t know how this can open the body to Candida issues that can cause tongue issues. It is difficult that doctors and even ENT’s don’t seem to take concern with how aweful it is for the tongue hurting, trying to eat, and palate being infected as many of the tongue issues are not curable and treatments can cause side effects killing too much good in mouth causing other concerns. It seemed to me doctor’s just wanted my body to fix it while I suffered.

My palate has been repaired 3 times so it getting infected scared me a lot. The ENT prescribed triamcinolone paste .1%. for the palate perferations. If I had gotten it within days (why I went to emergency)it may have helped these perferations from getting worse as it did help once I got it but they still exists in my mouth today and have healed only slightly.

I also was prescribed some mouth wash I don’t have handy but is basically a steroid rinse but pharmacists and my primary doctor agreed it can cause thrush! I waited to use it and then when my throat culture came back thrush was not present as had healed by time of appt w/ENT so didn’t need steroid mouthwash but was on Nystatin mouthwash for a month!

I was also prescribed mouth tabs from my primary when thrush was present and ENT agreed she helped resolve a lot. The tabs where Clotrimazole Troche 10mg. They helped the Thrush clear up but then with glossitis it seemed to start stripping my tongue of healthy everything so once I stopped it took a week to recover from the treatment. I also got probiotics SyntolAMD and was amazing how much they helped my stomach nasuea and I haven’t had any tongue issues since even with more UTI’S & psoriasis & another round of antibiotics.

The candida diet is intense but it has helped me to be aware. I had stress induced by many issues but also emergency room after a UTI for jaw related pain with opiod issue from new laws my new doctor didn’t get my script filled correctly and it was a Friday next thing I know I was in emergency high blood pressure, chest pain swollen face, etc. So the point is I had just gotten over a UTI but my immune system got so down that it came back. While in emergency they didn’t treat the UTI then I got thrush in my mouth. It took 2 weeks to get in with ENT in meantime my doctor got my oral Nystatin swish and swallow & tabs after a week when ENT couldn’t see me for 2 weeks.

I was back in ER after issues with my jaw & heart since thrush was infecting my palate. Since I was born with cleft palate opening of hard & soft it was a lot going on. But I thought maybe knowing about glossitis may help you and the other symptoms Hopefully the Neurologist may know but there are just so many nerves in tongue, cheek, palate just mouth/face area!

So it is normal to have anxiety and increased stress with pain but especially the “unknown”. The stress we know causes the immune system to be lowered. This causes yeast to be harder for the body to fight off. Glossitis & tongue issues can come and go and to my knowledge as doctors informed me it can be treated but isn’t forever cured and hurts. Geographical tongue you may have heard of I had.

So I started with thrush and it infected my soft palate and with my cleft palate I don’t have as much skin as others and Gortex closing my soft palate. Thrush started making perferations and opening my palate above my molars on both upper sides. Emergency doctors just wanted to send me home with oral Nystatin my doctor already had me on. By time I got appt w/ENT 2 weeks after all this the Thrush was gone but tongue pattern had changed and hurt still. A culture verified thrush was gone as thrush is contagious but I had glossitis by his knowledge since no tests verifies it only visually. So w/thrush, kissing can transfer, toothbrush should be swapped out and toothpaste can transfer as well so best to not share even mouthwash cap and food utensils double dipping, etc. Glossitis I was told by ENT & research showed is not contagious but can be painful and all these tongue issues are difficult even for experts to diagnose! So ENT prescribed the paste for me to apply to the preferation in my mouth. I don’t know if any of this may help as Candida is something that can be helped yourself and is just eating less sugars and bread that have yeast and encourage yeast growth. I went on such short strict eating of no sugars and xylitol instead when my tongue was infected, UTI, psoriasis, etc that I felt better & believe it helped. Either way I send you all the best and as knowledge is power may you get better and feel better for sure! My best-Charlotte

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