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e virus - or what? Please help if poss!
Please forgive (and bear with) the long preamble, but I'm almost at my wit's end and need to give some background. (Name changed for this.)
History of migraines, but haven't been so bad in last few years since cutting out dairy. Osteoporosis diagnosed in mid-40s after spinal fracture. Fibromyalgia diagnosed at 49, and then 18 months ago was diagnosed with persistent orafacial pain because I kept going to the dentist with 'toothache' that they couldn't explain, so was referred to Guy's oral medicine. Seem to get every cold and virus going, in fact never feel 'well' anymore for longer than 5 minutes. Have tried vitamin supplements but without success (many seem only to exacerbate feelings of being unwell). Because of unsightly and sore seborrheic dermatitis across my nose, between nose and upper lip, chin and between eyebrows (which I struggle to keep under control) I have a hard time taking painkillers and other types of medication, because they tend to bring on flare-ups. It's depressing as hell. Am pretty strict with diet as have learned the hard way that there are various things which trigger migraines, fibromyalgia and/or seb derm.
Last December had yet another cold which turned into a chest infection and was prescribed Doxycycline (allergic to amoxicillin, and so probably penicillin generally). I remember going shopping one day - I was probably halfway through the course of antibiotics - and it was really cold and I suddenly noticed a painful tingling in my nostrils (sinuses?) Was a bit taken aback but thought little of it because it wore off. I was just glad to be getting over the bronchitis to be honest. But as December turned into January I began noticing that sensation in my nose most days, and soon developed gnawing toothache (mostly upper right). No stranger to that of course, but the most worrying thing was I kept getting a nagging headache in my right temple and over my right eye. Daily. And debilitating. Oh, and my eyes were sore, dry, red with sort of 'pinprick' sensations in them at times.
Now, last autumn I had an upper left tooth pulled because a root canal done on it months before seemed to have failed (ie. I was in daily pain with it). Then weeks later needed a root canal on an upper right tooth, and it wasn't long after that I got the chest infection. So by February I was back at the dentist complaining of pain in the new root canal. My dentist is lovely and does her best for me. She's always mindful of the orafacial diagnosis now so at first she just x-rayed and noticed a couple of routine fillings that needed doing. (I've had terrible luck with my teeth - had a partial denture since I was 21, which now keeps being added to.)
I went away, but the toothache, headaches and what I now realise is sinus pain didn't. So weeks later I went back and after a very long chat we agreed I'd have the root canal tooth pulled. Not an easy choice, but the grinding, relentless pain I've been in swung it. Oh, forgot to say, I've had a couple more courses of antibiotics since December, to see if they would help, but no infection was showing on dental x-rays. Well, it must be three weeks now since the extraction, which changed nothing. My dentist warned me and she was right.
Have since seen GP who suspects sinus infection, but a further course of doxycycline has achieved nothing. My sinuses are definitely part of the problem, but I can't use steroid sprays because the seb derm flares up badly, along with some cystic acne, and then takes weeks/months to bring back under control. I've been doing the salt water irrigation thing for the last few days which helps a bit but the pain is dragging me right down. I'm so fatigued that I can't stay awake in the afternoons at the moment and sleep for 2 or 3 hours. I'm depressed and have found myself thinking dying would be preferable to all this daily pain in my face, mouth and head. I've lived with various episodes of pain for many years now but this is the worst.
Not seeing GP until Thursday. Taking Sinutab some days, antihistamines (allergic to tree pollens, yay), sometimes paracetamol (codeine dries out the sinuses and is hell the next day).
Is it possible this is a very fucking nasty virus?! Or does anyone recognise the symptoms from something they've suffered with? I've noticed very occasional bits of earache but not really - definitely some tinnitus going on though for months now, and when I blow my nose after the sinus rinse I get squeaking pressure in my ears, like the air can't get through. Don't know if that's relevant but am using Otex to loosen up potential ear wax.
I could go on, but am really sorry to have banged on enough already. Just don't know what to do for the best anymore. It is sapping the life out of me! Still got sore red eyes most days, the headache, intermittent sinus pain, blowing my nose like there’s no tomorrow, and toothache (which likes to move about – today it’s on the left). My neck, shoulders and arms ache. Not sure how much more of this I can take.
No idea, but I'll bump for you.
Hope you get to the bottom of it all soon. It sounds grim
I'm sorry OP, I have no real suggestions but didn't want you to feel ignored. Hopefully someone more knowledgeable will see the bump.
Very minor but I sometimes find flossing helps my tooth-headaches (it occasionally feels like there's not enough room), drinking lots and if my ears squeak then getting rid of earwax. It might help the symptoms a little even if not the root cause.
Thank you both for replying, it's nice to feel heard I use those little interdental brushes most days (rather than flossing, which I never got the hang of). In better times that often relieved 'dental headaches' but does very little for whatever this is.
Will keep putting the drops in to clear any wax, fingers crossed!
I am no Dr so what I say could be complete rubbish! However I have had chronic migraine for the last 4 months and what you describe is similar.
I was referred to a neurologist and was told that nearly all sinus type headaches are in fact migraines. Also that migraine cause neck , face and shoulder pain. It is common for the pain to move around.
Can you speak to your gp and ask for a neuro appointment - I had MRI etc to rule out other things and then going on history was diagnosed with Migraine.
I was advised to take magnesium supplements given a diet sheet and medication.
Heal your headache book also explains how migraines and sinus can get mixed up by patients here
It is so wearing being in pain I hope you get it sorted soon
OP, I don’t have your other health concerns, so this could be utterly useless, but I suffer from a form of facial neuralgia which moves around my teeth. I was going back and forth to the dentist in pain, she was finding no dental issues, and I was actually begging her to take teeth out.
I was referred to maxillo-facial, had loads of tests, including an MRI, and diagnosed there. My dentist told me extracting the teeth would not help, and I am glad I listened to her.
The treatment I was offered was antidepressant type drugs to block the nerve pathways, and which I didn’t want to take, so I try to manage it myself. I am on three monthly checkups at the dentist now, because when the pain shifts about I get scared it is actually a tooth - and sometimes I go in between if I am really worried. I also get terrible burning in my gums, like pins and needles, but again, my gums are completely fine. Stress seems to make it worse, partly because I am also a night-time clencher. I think that was my trigger - in 2017 my DP was made redundant which was hugely stressful, and I cracked a back tooth with clenching, and it all started from there. I now wear a night guard for the clenching, and have reduced to four days a week at work.
Dental pain is just miserable, I hope you can get some relief.
Oh, and when my pain is in my upper teeth, sometimes I have the burning sensation in my nose. My lower lip also feels tingly/ticklish a lot of the time.
I'm assuming that guys would have checked it out, but a lot of your symptoms could be caused by clenching your teeth and tmj disorder, pain in your temples, sinuses, tinnitus. Especially if you are missing teeth and have a partial, which basically means that the force is going to be distributed across fewer teeth.
Did they ever give you antidepressents? A short course of antidepressants can be really good for atypical facial pain, most people don't need to be on them forever.
I would stop having teeth taken out, honestly if there was a dental cause it would be obvious by now. Taking your teeth out won't help.
It could also be migraine related.
Thanks so much for all your replies. Apologies for this short one but I'm finding it difficult to concentrate this last couple of days.
Neither Guys nor my dentist have ever mentioned clenching, @BlueCornishPixie, but it makes so much sense! I've even had dreams where I feel immense pressure in my jaw! How do I get a 'guard', does it have to be made specially, bespoke? I must try it.
Yes, ADs have been tried (Duloxetine, Mirtazapine - and various SSRIs over the years because of mental health) but I can't cope with any of them. Dentist has now suggested amitryptyline, and GP is deliberating. But as a PP said, think I need to go back to neurology. I was seen for my migraines 10 years ago but not since, and perhaps this is a development of my migraines. I can see how it might be.
Must look into magnesium, I hope I can tolerate it but I have trouble with supplements. Tried reading the headache book last year and couldn't get on with it. To be honest, I felt like I knew the three steps already and they weren't doing enough for me, in and of themselves. But thank you for the helpful suggestion, @OverFedStanley
Had an almost pain-free morning, even went for a lovely long walk in nature for the first time in a while. But by lunchtime the pain was dragging me down again and my mood and energy levels went with it. But I've discovered acupressure tips on youtube which are helping, and the Sterimar sinus irrigation stuff is helping sometimes too.
Ask to be referred to a neurologist, and in the meantime ask for an antibody screen to make sure you don't have some kind of autoimmune condition lurking.
Oh, and if what you are rinsing out of your nose is coloured, ask for a nasal swab too. (Not comfortable, sorry!) It will diagnose any infections you have up there.
Low dose Amitriptyline would be the first port of call around here for persistent orofacial pain with no other cause. So try to persuade your gp.
For the guard your dentist should be able to make it for you, or oral medicine.
Clenching can often cause pain in your temporalis muscles (in your temples) which leads to referred pain in your upper molars. So people think they are having pain in their upper teeth but it is actually coming from their muscles. Which sounds consistent with your headaches and toothache.
I'm not saying necessarily it is because obviously I haven't seen you, but that would be my initial thoughts. I would definitely see if your dentist can refer you back to guys.
Hope you get something sorted OP
I had chronic facial pain for years, fobbed off with sinusitis diagnosis, numerous dentists and doctors could offer nothing more useful. I had to reduce work hours, did nothing after work except sleep and watch TV to distract from the pain, I ended up on anti-depressants.
A locum GP suggested trigeminal neuralgia, which I felt didn’t quite fit, but went along with to get another referral to ENT (GP said max fax which was more appropriate would take much longer). Started taking gabapentin which gave me pain free time for the first time in years.
Changed dentist and they did X-rays which showed a massive root abscess above my front tooth, to the right of my nose. I believe this had been coming and going for the whole time (I initially presented with dental pain) and had caused my nerves to be over sensitive. Dental treatment helped enormously.
I stopped taking gabapentin to try for a baby and my pain more or less disappeared completely while I was pregnant. According to the internet this can happen. I do wear a mouth guard to help with clenching while asleep (I can tell when I have been) and I get occasional days of pain, especially pre-menstraually but I think I tooth clench more then too, (during the day as well as more quick to temper/stress) but it is nothing like it was for all those years. I cried in the dentist last year because I had dental pain and was so scared of it coming back.
Hope you find the source of your pain and get relief op.
OP, it was my dentist (who is an absolute star) who referred me to the hospital - I hadn’t seen a doctor in years until the results of the MRI went to my surgery and I had to go in. I was offered Amitriptyline per bluecornishpixie, but the Max Fac consultant really talked up the side effects, and I need to be “on” for work. I have found some relief with a supplement called Alphalipoic Acid, which I came across in a leaflet I found online from Oxford University Hospital. I take magnesium too, but for sleep issues. My diagnosis was atypical facial pain, and burning mouth syndrome. I had a checkup at the dentist a few weeks ago and my teeth were deemed “smashing”, and my gums all 0. I feel like having that reassurance everything is okay is really, really important.
I had a night guard made after my dentist figured I was clenching my teeth, but the Max Fac consultant recommended a very specific, different type. I initially struggled to wear it, but now can’t sleep without it. It does rather knock spontaneous sex on the head - between that and my earplugs because DP is a massive snorer, I am a dream!
OP I haven't read full thread so apologies if it's already been mentioned but Pregabaldin and Gabapentin are both medications that can help with the type of pain you describe. Has your dentist done a full 3d x-ray of your mouth? Think it's called a cone beam x-ray. I had similar symptoms to you and the cone beam revealed a dental infection high up in my jaw near sinus. All the standard x-rays had not picked this up.
I'm guilty of not reading the full thread too I'm afraid. But I second the suggestion for autoimmune testing. Have you been tested for Lupus? Google Lupus face rash and see whether it looks similar to yours... Some of your other symptoms could fit too.
How about vitamin deficiencies? B12 and vit D deficiency could cause many of your symptoms too.
Good luck, and do update us on how you're getting along.
Thanks for all your suggestions everyone.
BlueCornishPixie, am also going back to my dentist next week to ask about a guard. Last time I saw her (for the extraction) she said she didn't think there was much point her referring me back to Guy's because they made the orafacial diagnosis last year, but maybe she will now because of potentially needing a guard made. I think I've noticed that part of the problem is pressure in my right jaw, and they would probably need to look into that anyway. They haven't technically discharged me so I wonder if I could call them and ask for an appointment?
OldGrinch, if I do manage to get seen at the hospital again I'm going to mention my suspicion that I have a hidden infection and hopefully they'll give me one of those super-dooper x-rays like you and Singing have had!
BlackInk I'm glad you mentioned lupus, it's something I've been wondering about a lot recently. I've got a rheumatology follow-up next month because of my osteoporosis and fibromyalgia so I'm going to mention my concerns and beg for an assessment to try to rule lupus out, although I gather it can be a difficult condition to definitively diagnose in many cases. I've been convinced for a while that I've got something autoimmune beyond the fibro, but it can be so difficult to get their ear when they only want to get you in and out for the sort of appointment they called you in for and not get into 'other' conversations
Just wanted to let you know I take amitriptyline and really struggled with the side effects. Until I had a doctor who suggested I take it last thing at night - I now sleep through them! It does take a few weeks to get used to any increase in dosage but it is worth it.
I hope it works for you too.
Thanks for the tip, Binglebong. GP said to take twice a day but there's no way I'm taking 20mg a day to start off with! And now you've shared your experience, I'll make sure I take it at night anyway
Have you noticed any particular long-term side effects more generally from taking it?
To be honest I've taken so many different things over the years that I have no idea what is a side effect to what or if it's just my illness. Not very helpful! On the other hand I've been on amitriptyline for years so if it was too bad I'd have notice at the beginning, if that makes sense? It does definatly help with pain though, I'm planning on asking for an increase soon.
I'm feeling pretty freaked out tonight. This morning I started using chloramphenicol ointment because I've noticed my right eye in particular has been red and droopy and a bit bloodshot. I thought maybe I have some conjunctivitis on top of everything else, with being so run down now, and the right eye is mostly where I've been getting the daily headaches, and the right side is predominantly where the sinus and dental pain has been too.
Anyway, this afternoon I put some more ointment in the right eye, then as I was squeezing some into the left eye (looking straight ahead) I suddenly noticed the right eye floating to the right!! It gave me a shock because it was such a bizarre sight, and I thought at first I must be imagining it. But my eye felt gloopy because of the ointment and as I continued putting it in the left eye I noticed the right eye drift involuntarily to the right again. My heart sank, and I wondered if the ointment was somehow dragging the eyeball but that didn't make sense, it's just ointment and I've put the stuff in my eyes a few times over the years.
Well I reckon in the space of a couple of minutes I saw it do that 4 or 5 times as I made a deliberate effort to look straight into the mirror. I felt very strange about it but I was due to go out so I put my sunglasses on and forgot about it for a few hours. I've just looked in the mirror while doing my sinus rinse and both eyes seem pretty centred and actually look brighter than they have for weeks, so I reckon I have got conjunctivitis and the ointment is already helping. But I googled and apparently it could be something called strabismus, the exotropic kind. I'm now wondering if this is related to the headaches over that eye.
I know it's unlikley but have any of you had any problems with the mechanics of your eyes due to sinus issues or dental pain? Or am I just falling to bits?!!
Updating because I'm struggling with increased pain (mostly in my jaw) after taking 10mg a day of Amitriptyline for a week. Was really feeling some improvement and then this morning it came back with a vengeance. Hasn't let up all day even though I've taken an extra dose of the Amitriptyline. Think I mentioned earlier in the thread that GP prescribed 20mg a day but I decided to start at 10. Side effects not been too bad, and I'll keep taking 20mg after this shock today, but am a bit worried that this isn't nerve pain as such, because it feels like my jaw is broken! Have had impressions taken by the dentist for a mouth guard, picking that up on Monday and perhaps that'll help. But I'm unhappy at the prospect of taking painkillers on top of the amitriptyline, had hoped the daily doses would mean I wouldn't need to rely on painkillers much anymore.
Sorry for going on, I know there's nothing anyone here can do, just needed to write it down really!
Really sorry to see that OP. if it is any help I know I need to adjust my amitriptyline when I increase my painkiller use so when you get tye balance right it does help.
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