I can only assume this is related to my LVV (Large Vessel Vasculitis) but three months ago I woke up to a slightly numb face, checked myself out in terms of stroke etc, but knew it wasn’t that, plus tinnitus which I do have occasionally but this is now all the time and can be pretty loud at times. Saw the doctor who didn’t really do much after establishing it was not a brain thing or stroke. Roll on 3 months and it is still there on exactly the same level. Anyone else had similar? Is this just it now for me. I did increase my steroids at the time but it didn’t do anything really. Ever since TCZ was taken away in August 2022 (6 months early) I have had several flares and not really felt as good. I am now back to trying to reduce (after having Covid over Christmas and New Year) but am doing it even slower than I did before. I can deal with it, was just interested if anyone else can relate.
Numb face and tinnitus: I can only assume this is... - PMRGCAuk
Numb face and tinnitus
Hello, when I had similar symptoms with a bit of hearing loss, my GP wanted to send me to a neurologist for possible acoustic neuroma but it resolved though the tinnitus hung around. GCA was diagnosed about 18 months later. The quality of the tinnitus changed but the ear feeling went, my hearing improved a bit and I just had Pred tinnitus. Over time my tinnitus has got worse and it can be associated with vertigo bouts now during which my tinnitus is outrageous. Referred with possible meniere’s. It was also referred to the nurse led tinnitus clinic which is quite helpful. They did a head scan to rule out acoustic neuroma too. The long and the short of it is that it isn’t always clear cut and it would be nice if your GP took a bit more interest. Could be LVV or it might be something else and it is obviously going on a while now.
Yes, interesting isn't it. I am almost used to the tinnitus, but the numb tingly face is the distraction. I have just heard from someone a really good tinnitus clinic is a local hospital to me so I will see how things go and perhaps asked to be referred to that.
The GP was nice but...... GPs say the NHS is a joke and my cousin who works for the NHS say the GPs are a disgrace..... I just keep quiet on all fronts and have my own views on both!
My daughter would suggest that part of the reason the NHS is a joke stems from the disgraceful state of primary care! Not the GPs themselves (though they can be a joke on occasions) but a seriously broken set-up. She also has a revolutionary idea for sorting the NHS: "Pay the junior doctors what they are worth!". Given she does the same job in the ED as the F1 and 2 juniors and is paid notably more because of seniority in the NHS, I think she knows a bit about it!
Good idea , although it wouldn't resolve the situation in Primary Care .The government were applauding GPs for an alleged massive increase in appointments last week of around half a million.
All I can think is that this has occurred because they seldom ever see anyone face to face and do so many unsatisfactory appointments over the phone , making assumptions on people's condition with absolutely no physical examination.
Not that I'm against phone appointments, they are a great time saver and relief for patients whom might have an infection and just need antibiotics or a cream to sort things so you can get treatment before things get too serious. It's great for a general enquiry about ongoing treatment or a bit of advice on doses.
But , if you have a new problem or something that really can't be judged from a conversation it can cause a lot of delay and misery. And , if they don't just dismiss you as cured from a five minute chat, then note a successful outcome in your notes, you are still left waiting weeks to actually get seen by the GP in person.
I had Tinnitus and Trigeminal Neuralgia before GCA , since GCA I still have them.My Tinnitus is part of the Vascular aspect of my Migraines.
I hope you don't get TN , because that isn't just numbness but constant neuro pain , let's put is this way before I got my Neuro pain medications sorted out it was the cursed gift that kept on giving . They don't nickname it the " Suicide Disease" for nothing!
The numbness could be linked to any inflammation in the temple region from GCA or LVV putting pressure upon the Trigeminal Nerve.
It's worth get properly assessed early on by getting referred to Neurology and having the TN scanned.
A mild Neuro pain medication can relieve the unpleasant numbness and tingling feeling in your face which can be very distracting or cause you a bit of difficulty in eating even when it isn't painful.
Yes my friend's husband has TM and I know how he suffers from it. I don't seem to have any additional issues, just the weird sensation. The tinnitus varies too.
Have had a check up at the dentist as well.I know I can get the numb only issue if I've got a dental issue going on that isn't giving me other dental symptoms.
Tooth movement in the socket can also press against the nerve and cause these symptoms, even if you can't see the tooth below the gum has moved at all.
I've got a problem at the moment and I'm doing the endless wait for the dentist and my cheek has that numb feeling all the time .
Is your tinnitus a constant hum or does it make a pulsing sound when it happens . Pulsating Tinnitus is more often related to inflammation and vascular causes. Static tinnitus can have numerous causes but the numbness in the cheek does make it appear more like a neurological and mechanical cause.
It varies actually. Sometimes it pulses other times it just screams!
I can't talk about teeth. It is far too depressing. Due to bad bone health I have lost way too many and now I have had Zoledronic Acid infusions no one will touch me for implants, plus I would need a bone graft on top.
Ditto! Hence the excessive wait even for the appointment to decide how they extract my broken teeth.
They don't suggest the implants because of my EDS , which was always the cause of my teeth moving and causing decay ( not bad oral care which they used to accuse me if from childhood) , my jaw having intermittent TMJ and subluxations , implants are more likely to twist and cause more jaw bone damage.
My first mass extraction of adult teeth under GA was at 40.
But my tinnitus in one ear and the TN is definitely associated to the movement of the bones in my jaw and pressure from bone movement in the ear .
I'd suggest a request to the dentist definitely now , even though I completely understand how depressed it makes you feel when you leave. It could be the movement if implants causing the problem and if you can't be seen by a normal or private dentist , and there is a medical cause for the dental issue you could end up getting treated free by the NHS oral consultant via Hospital dental services like me .....when you finally get an appointment that is !
But I'd also request a referral to ENT via the GP because if it is some bone displacement it's better to have it examined and treated early , if you want any chance of not ending up with permanent tinnitus or neuro damage which leaves your cheek and jaw numb most of the time. This could also get you fast tracked to the hospital orthodontist if you request it at the appointment.
Good luck with it , Bee
Hi Sophiestree. I have raging Tinnitus most of the time. Also left side of face puffs up and turns red occasionally. Plus ears block up randomly. When I asked GP and rheumy about LVV I got chuffed off. I've attributed the Tinnitus to the acute TMJ/TMD for which I'm supposed to be wearing my bite guard 24/7. No excuses. I'm getting back into it at this time. Sometimes I can handle the Tinnitus, others it drives me bonkers. I hope you get it sorted. I don't want LVV, but would like these things ruled out instead of a rheumy acting like she doesn't know what it is.
my face doesn't puff up, that's interesting you have that. Have they checked your sinuses? Sounds really frustrating for you.
No they have not. It could be moon face which had started to dissipate prior to the flare. It's like a half moon face. We shall see if it stops as I continue tapering.
Cross my fingers for you
The only kind of tinnitus I have is pulsatile, which is intermittent, so probably not relevant to you.
However, I have had tingling across the middle band of my face since GCA developed. It is there nearly all the time in the early days, and not to frequent or insistent now. The consultant showed no interest, but then I noticed he put it on the application for me to have TCZ.
On of the consultants who did a talk at one of the PMRGCAuk sessions said a tingling face was definitely part of GCA.
Why did they take away your TCZ?
That's so interesting that re the talk and that a tingling face was definitely part of GCA.
They cancelled the TCZ even though I had 6 months left (would have been 2 years in total) as one doctor said an additional year and another said no. So I couldn't really argue as the decision was made.
I am guessing from what you are saying that you don't have that tingling across your forehead now?
I still get it, roughly from my eyebrows to the bottom of my cheek bones. It is there is a subliminal way most of the time, but sometimes becomes more intrusive, I think it's more when I get tired. Maybe too when the blood pressure drops. I can't work out whether it is the GCA effect on blood vessels, or some sort of impact on nerves.
Is there not some compassionate dr who could squeeze you out a dx of Takayasu's? LVV is so very similar, and it seems counterintuitive to remove a drug from someone who is benefitting. Rugger wrote to her MP about this, but did not get a reply. I think I would be doing the same.
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