Hi -
I am new to this forum, but not to facial pain. I think I may have ATN, waiting to get into a neurologist who specializes in headaches. I had an aneurysm burst in my brain in Aug of '21, from which this journey began. I have uploaded two pics of the most obvious swelling I have when I have the most severe pain. I am wondering if anyone here has encountered something similar? I uploaded these images to the brain aneurysm group and have gotten no replies.
Other question - does anyone know of a collection of images of the type of facial swelling people have with atypical TN, or TN in general? Tired of googling and getting the same pics, all which donāt help.
Thatās very interesting. I havenāt seen anybody mention facial swelling here. Have you done a search on this site using the search term āswellingā? It makes me wonder if itās vascular in nature. Please update us once you get in to see the neurologist.
Yes, many of us have swelling on our TN side. My face pulls hard to the right some days, and on those days my upper lip swells up quite a bit. Or the area above my lip if you know what I mean. I end up looking like someone hit me in the mouth. I kind of feel like it too! My face gets so achingly tired.
@Lorna thanks so much for the reply. Have you had any luck with your dr. recognizing the correlation between TN/TN2 and the swelling? I havenāt gotten my diagnosis yet, hoping to soonā¦ just losing faith in the medical profession over the last year.
I suffer from persistent idiopathic facial pain on the left Side of my face I am 69 it came on when I turn 50 the upper left part of my roof of my mouth the left side of my nose and now constant headaches around the temple I had an MRI done of my brain four months ago and nothing showed the neurologist said three little white dots showed which means migraines Iām on Lyrica no opioids but to tell you the truth they say opioids donāt work on nerve pain bull crap it does help it helps a lot it takes the edge off where you can function instead of lying down and crying and praying to God to help the pain to go away I donāt have trigeminal neuralgia that was out ruled so now that we moved up to Ocala Florida thereās only three Neurologist up here I am with Dr. Lance Kim now he wants to take me off Lyrica and put me on another anti-compulsive medicine Neurontin didnāt help the other crappy wrote out which is a big long word didnāt help and now he wrote out something else but I look up the side effects and Iām very scared to take this anti-compulsive I do have a little problem with my liver and my heart and there are warning signs for this medication so I patient portal them back and told them about it because they didnāt know and I have an appointment with my PCP September 21 to discuss everything I went to the dentist the other day because I believe the headache was coming from a tooth where are the filling has fallen out I left it go for five years he told me that I needed a root canal but I told him it canāt happen but on the same hand told me the headaches were coming from the tooth so he referred me to an oral surgeon he said he didnāt wanna pull the tooth because there would be difficulties I donāt know what kind of difficulties outside of an increase in my facial pain my prayers go out to you dear facial pain also known as a typical facial pain and trigeminal neuralgia are two different things but the pain is horrendous right now I donāt know which way to turn living on extra strength Excedrinās but thatās not good for you either but it does help with my headaches so prayers for you and they diagnose you properly and put you on the right medication and Iām sure it will be an anti-compulsive good luck Abbie
Thank you for the reply. I tell ya, I surely donāt feel overly optimistic hearing about what everyone has to go through with thisā¦ but it is nice to know I am not nutso. I was on Lyrica for 3 months, not related to this, but after I got out of the hospital after a ruptured aneurysm in my brain ā hated it and took myself off of it so I didnāt feel so out of it all the time. I am going to have to look back at my timeline over the last year and see if these symptoms really kicked in after i stopped the Lyrica.
You had some success with the search? It appears that there are some people who have noticed swelling similar to what youāre talking about. Iām glad youāre here and able to get some feedback.
Yes, thanks - there seem to be quite a few folks dealing with swelling. Odd that you canāt find pictures anywhereā¦ or references to swelling in any of the āofficialā descriptions of this crazy illness
Hang in there. It took years for them to diagnose me, and they are much faster at it nowadays. My doctor does get it. He gave me baclofen to help the pulling on the bad days in addition to my other TN meds. I also have medical marijuana but that only relaxes me, and helps me sleep on the bad days.
Hi. Iāve had atypical bilateral trigeminal neuropathy type 1 and 2 (although I understand that those classifications may be outdated) for 23 years. Iāve experienced swelling of my face along my temple area at times when the pain is bad.
Iāve tried pretty much everything in the way of meds and only Clonazepam (anti spasmodic) has helped although only a small amount. Still, some help is better than none, right?
Iāve found some relief with applied heat and relaxation exercises. (Deep breathing and calming thoughts. For myself I breathe in God and His peace and breathe out the pain).
No one asks for this but if we have to deal with it I believe we must fight it with a positive attitude (this takes time and determination). Research, and in turn educating our family and friends gives us a way to live successfully despite the condition. My local support group is fantastic, bringing in special speakers, providing a safe place to vent and offering support to one another and advice from personal experiences.
I hope you can find some help from those on this site and in your community. God bless.
