Hi guys,
It’s been a while since I’ve posted…rough 2020 n even more so in 2021.
I’ve noticed that as I get older and things progress my symptoms have gotten worse….frequency and level of pain increases.
Have any of you noticed facial swelling during flares?
I have all 3 branches of the trigeminal nerve affected on the right side of my face and during my worst flares, the right side of my face is noticeably swollen.
Any tips on managing this would be greatly appreciated!
Wishing everyone the best during these tough times and keep safe!
Jks…
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I did experience facial swelling with flares. I was diagnosed with TN approximately 12 years ago. I tried numerous therapies and medications throughout the years. Over 3 years ago, I decided to have MVD surgery. Nothing was working anymore and I did not want to go on disability, but performing my healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL. My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free and I still am today. My only regret was that I did not pursue surgery years earlier.
Best Wishes for Relieve.
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Ice would help.
The key is slow down the flare. I would take tramadol and sleep for days/weeks Normally it will come down…
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I get a facial swelling also and I’ve noticed that in the last five years and I’ve had TN for over 20 years The only thing I’ve noticed that helps relieve the pain and the swelling is using a heating pad sometimes for two or more hours to stop the pain that is on top of the pain meds that I take (Oxycodone) for breakthrough pain When it’s so bad that I can’t stop the pain with the heat and after taking 3 - 4 pain pills I do have to go to the ER and get a Toradol shot and that’s the only thing that relieves it that happens probably three times a year because I don’t want to take too much of the injections because that can cause even more problems than already have because of the meds I take but I do know that when my right side of my face started to swell I know the pain is going to be bad and I try to start the pain pill before it gets that bad but sometimes it’s just too late the heat has been the best thing to stop it for me and I know some people say ice works but the cold seems to aggravate my face everybody is different I’ve tried just about everything that I know of except to cut the nerves I’m just afraid when I do cut the nerve that is a cost data paralysis or grouping of the base to 50-50 chance of that happening I had a 1% chance of losing my hearing when I had the MVD and I did lose my hearing so I’m a little more cautious and doing some things The only thing I can say to you is listen to the different people and try the different things and find out what works best for you Because everybody is different good luck
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I also experience swelling. So far nothings will help when things get real bad. I also find it affects my eye. My sight gets blurry. Marijuana helps a little, takes the edge off. I can not talk. I also find hot or cold temps aggravates the darn “thing”. Sharing this awful handicap does help. Good health to all of you.
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I’ve also had this condition for over 20 years. (23 to be precise). Swelling has been a component for me, as well. I have found heat to be somewhat helpful, too. Unfortunately I have atypical bilateral trigeminal neuropathy and there’s no surgical recourse for me. I’ve tried pretty much every medication and they either allergic to them or they were ineffective. Clonazepam helps some. I’ve also tried acupuncture, cupping, etc and only chiropractic has given me some relief. (NOT a bone cracker but gently manipulation.)
Perhaps you should look into the surgical procedures. I’ve heard of others who have been greatly helped although others have not. It’s kind of a crap shoot, I think but maybe worth looking into if just the one side is affected.
I pray you’ll find something that will help. The last year has been better than the previous one although certainly not pain free by any means. Perhaps you can experience some type of remission by being extra vigilant about avoiding triggers like cold, wind, loud noises,bright lights, talking and chewing (within reason, lol!). Even looking down for any period of time can cause pain.
All the best,
LIH
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Depends on the cause of your TN. I have benign schwannoma tumors that keep appearing on one of my trigeminal nerves, and my face has been swollen since before my first biopsy. I’ve had five surgeries so far, and none of them have reduced my swelling. Heat or cold don’t change anything for me, but seem to help others.
Have you had an MRI yet to see if it is a tumor or an aggravated nerve or something else causing your pain?
Dear Cadworks50,
I read your reply to JustKeepSwimming, and I’m concerned that you might have become dependent on the narcotics you’re using. Friendly concern, not judgment. I’ve recently read an article: “Upper Cervical Spinal Cord Stimulation as an Alternative Treatment in Trigeminal Neuropathy.” This is the first I’ve heard about this option for TN, and I wonder if you’ve heard about this. In any case, I wish you well!
When at its worst, my pain some years ago made me think my face was swollen. I could never confirm that it was or just felt that way.It also looked ‘oily’ or ‘sweaty’. Regardless of my thinking I just thought more about what to do about living with the pain. I think it was probably more in my imagination. Think about seeing both a (good) neurologist and an allergy or ENT specialist.
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Yes, the left side of my face gets swollen and hot, and turns red.
Yes, I get the swelling too with a flare-up. I also have a constant swollen area between my right eye and ear going up into my temple. The area is also very sensitive to touch with a constant light throbbing pain for the last 12 years.
Lately I have blurred vision. I had my eyes checked but all seems well. I just don’t understand that my sight can still be the same but it looks to me as if I see through fog!
I use CBD oil, I go to the chiro, I go for acupuncture and I go to infrared saunas, let’s face it, you say try it for pain, I do!
Yes I’ve heard about the stimulator that help with trigeminal and I have tried those also and I had to turn it up so high that it distorted my face and having that aggravation was as bad as having the disease but this carried on all day long I could not turn it down at any time when the face paint wasn’t as bad it did not stop the pain only if you could have it turned on then you wouldn’t be thinking about the pain he would have the stimulator‘s on but they were up so high when the pain was so bad that I couldn’t stand it so yes I have tried those also
I also know that I’ve been on the narcotics for a long time and I was up to 30 mg I put myself down to 20 and I know lm addicted to it but I’m addicted to it because of my pain I don’t keep going up and up on the milligrams and I’ve been staying steady at this for 20 years I wish there was something else out there and I’ve been trying them with a lot of bad reactions to the different medication and I keep trying and that’s why I called Mayo clinic to see if they know something that might help thank you for the help though
No facial swelling. Sounds like this effects everyone differently. 
I also have swelling on the left side of my face. My pain is also a constant numb tingling throbbing sensation, with several electric type jolts at random times. I also have stinging in my left eye that is there more than not. I believe the combination of Tylenol arthritis, clonzapam, and flonase at night helps with the pain, however it is very difficult to sleep on that side. I have a soft pillow, but it still feels like I am laying on a pillow of cement. Does anyone else have this trouble when laying down? Weather especially effects my nose, mouth, gum and lips. I can tell my husband when the atmosphere is changing. Changes in seasons are very difficult. Trusting in God’s grace allows me to know He will not allow me to go through more than I can handle helps me so much! There are so many people who have much worse health issues than myself. I try not to fight against this painful condition, accept it as a part of my daily life and try to live through it. My husband is very helpful in grocery shopping and not demanding more of me than I can do when it really gets rough going! A lot of people do not have a supportive family. They say it is all in the mind. They can not be more wrong! I have been blessed with a close knit family who tries to understand and tries to be informed about this condition. That is a lot of love! May God bless you!
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I sleep in a recliner every night, to reduce facial swelling.
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My face swells up on left numb side and burns constantly all that helps is sleep or people around but live alone mine in ten and how I have achlasia inthroat to narrow to enter stomach I’m on a mci-key to get fluids down
Any suggstions I’ve tried bio feedback hypnosis and tapping. Opiates made me feel better but they took away I know how u feel
Makes since I have adjuapstable bed when I stand it all starts or in showe I use Liodcaine drip to my nose and meloxicame helps
I had TN on the right side of my face originally, but after multiple procedures(2007-2019), the last of which was a balloon compression (September 2019) which left me totally numb on the right side of my face. Throughout the day, I experience what feels like the inside of my cheek is swollen and yet when I look in the mirror there is no visible swelling inside my cheek, however, I can see that the outside of my cheek is slightly swollen and the corner of my mouth droops on that side. I can hardly speak intelligibly.
The real bitch of it all is that the actual TN pain has now switched to the left side and has increased in both frequency and severity. Lucky me.
Thank you all for posting all of this personal information - glad to know i am not losing my mind. I am trying to get in to a neurologist to see if I have TN2 – all the descriptions seem to be on the money for me. I came here to find out if others experience swelling - and here I am!
Below is a picture of my more obvious swelling during an attack-- it gets really hot too. Does this look familiar to anyone?
TIA -
