I have been on this site for a while and I first want to thank all of you that have helped me through many crisis modes and helped me gain an understanding about both TN and GN. I am taking many medicines that seem to keep changing every month. I have relief at times but continue to have daily outbursts of pain 2 to 10 times a day.
My neurologist seems to be confused by the fact that when I have pain from the TN and GN I also have swelling in these areas. Several of the neurologists have even suggested the diagnosis was wrong since all of my scans have came back normal. I feel that either the pain is causing the swelling or there is a different problem in addition to the neuralgia.
My question is does anyone else have swelling in the eye, face or throat area from these 2 illnesses?
I have both TN and GN and yes, I too have swelling on one side of my face. My scans also came back normal, but I continue to have pain. My neurosurgeon suggested that sometimes you can't see the blood vessel that is hitting that trigeminal nerve. He referred me to an awesome pain management doctor and as much as I could go to him - he is in the city and when my pain hits, I need that shot right away and if I don't I'm in absolute misery. Dibilitating pain that its difficult to function.
I Have TN and I also get swelling at my TN-side. Sometimes I have my ear somewhat stick out at times when I got earproblems. So yes, whenever I got problems at the the left side of my face, chances are high my face shows some kind of swelling.
I wonder: is the swelling a symptom, a cause of a result? Of what?
Thanks for responding Scott. I have been to so many doctors and been hospitalized twice because they keep looking for something else due to the swelling. It's nice to know I'm not the only one!
Scott said:
Hi Virginia girl,
I don't have GN, but I do get swelling on my TN side on my cheek sometimes.
Thanks for responding Redbaron. I hate that you are suffering through so much pain but I am relieved to know that someone else has the same issues. I've had so many neurologist examine me like I was a test rat and not come up with any answers or help. They just keep saying I am a rare case and they don't know why I'm swelling. My neurologist is great and he continues to try alternative treatments trying to relieve the pain. What type of shots are you receiving that help?
redbaron said:
I have both TN and GN and yes, I too have swelling on one side of my face. My scans also came back normal, but I continue to have pain. My neurosurgeon suggested that sometimes you can't see the blood vessel that is hitting that trigeminal nerve. He referred me to an awesome pain management doctor and as much as I could go to him - he is in the city and when my pain hits, I need that shot right away and if I don't I'm in absolute misery. Dibilitating pain that its difficult to function.
Thank you for replying Patty. I have tried both warm and cold items but nothing seems to give me any relief. I am glad to know that others are having the swelling with their pain. All the doctors I've been to seem to think that's so abnormal that I have some other disease. I've been tested for everything possible and I'm tired of being poked and probed! I'm so thankful for this site where I can feel I am not alone!
Patty said:
hello virginia girl,
i also get swelling in areas on my cheek and chin when i am having a flare. lately i have using a warm wheat bag which seems to help. all the best.
Thank you for replying Ellis. My ear also burns and swells as well. I have also wondered if the swelling was just a symptom or a cause of some of the pain. I think that is why I have been tested so much because they keep thinking the swelling means there is either a blockage or something pressing on the nerves. This does not make sense to me because the pain goes from my eye to the bottom of my neck. If there was anything blocking something it seems to cover a large area!
I wish you all pain free days as well!
Ellis said:
Hey Virginia Girl,
I Have TN and I also get swelling at my TN-side. Sometimes I have my ear somewhat stick out at times when I got earproblems. So yes, whenever I got problems at the the left side of my face, chances are high my face shows some kind of swelling.
I wonder: is the swelling a symptom, a cause of a result? Of what?
I need some clarification. Is your swelling noticeable as a lump might occur on the back of your neck? Or is it a feeling of swelling like pressure inside your cranium?
I get swelling..the whole side of my face will swell and get red during an attack. Also when I have a flare up around my eye it swells, tears and gets blurry. So much for invisible. Other people notice it now which in a way makes me feel somehow ok with it because finally people can see that something is happening.
I understand now the pain you and virginia girl are talking about. Yes, the right side of my face is always slightly swollen. But mine is barely noticeable and just feels tight and tingly when I run my fingertips across my cheek, around my right eye, and down over my neck. I've had a very puffy cheek in the past but lifestyle changes I've made have helped. I use few medications and then only in an emergency do I rely on drugs to relieve the pain and relax my facial and neck muscles. It has been 6 months since I've had a full blown TN episode. I know how frustrating it is when others do not comprehend or understand the extent of the pain that you experience. I do hope your condition gets better and more manageable. Sincerely...polly
Hey Polly. My swelling is not like a lump. The entire area that is in pain, which is usually the left eye, side of my face, and my neck all turns red and swells. There is a lot of pressure in the area. My throat feels like someone has their hand around my neck and is choking me. It is scary and sometimes causes me to have trouble swallowing and even breathing but it is not an allergic reaction. They have also tested for that as well as given me allergy meds just in case. It only occurs during a flare up.
Pollywolly said:
Dear Virginia Girl,
I need some clarification. Is your swelling noticeable as a lump might occur on the back of your neck? Or is it a feeling of swelling like pressure inside your cranium?
That is exactly what I go through Jane! Thanks for letting me know I'm not the only one! I also have issues with my ear and neck turning red and swelling from the GN. Several neurologists told me that my diagnosis of TN and GN were wrong because the swelling does not occur with these 2 diseases.
justjane37 said:
I get swelling..the whole side of my face will swell and get red during an attack. Also when I have a flare up around my eye it swells, tears and gets blurry. So much for invisible. Other people notice it now which in a way makes me feel somehow ok with it because finally people can see that something is happening.
I don't always get warning signs but have occasionally. They range from mental confusion to extreme ear pain. I have stood in the store staring at a section for 20 minutes having no idea what I am doing or even what I am looking at. Soon after comes the swelling and pain. I have also begun waking up every day with extreme ear pain and when I move my neck will swell so much that it affects my voice to the point I can not talk. I have difficulty with swallowing at times when both sides swell but have only had difficulty breathing 2 times. I wonder if that is because it was a new symptom and scared me more than the swelling. I don't know. I just wish the doctors could do something to help me!
Virginia Girl
Pollywolly said:
Virginia Girl,
Are there any warning signs that let you know you are in danger of having a flare up?
I am new to all of this & am still to get the official diagnosis.....it will be a loooong time before I get my head around all the abbreviations, symptoms and treatments. With the state of pain my head/face is usually in, I doubt I will ever understnd much at all.....
So just to clarify: 'GN' in this case is Glossopharyngeal Neuralgia?
I am curious about swelling and TN: three years ago when my symptoms first presented, I broke out in a series of glandular like swellings to the side of my face, to the front of my ear, below my jaw and to my temple. This when mentioned to my first specialist an Ear Nose & Throat doctor (because I was having such horrible pain to my ear) dismissed me quite rudely. Suggestion of a possible TN diagnosis was swept aside with a grumpy "you don't have swelling in TN!" and that was that. It would be another 18 months before I felt strong enough to seek specialist help again, I felt so ashamed, insignificant and unacknowledged.
I only ever experienced obvious and prolonged swelling that once, during that first bout of the still yet unofficial diagnosed condition. So I presume I will never know if it was related or coincidental.
I'd love to know how common facial swelling is in regards to TN.
I'm so sorry you are having to deal with all of this pain. I would not wish it on anyone!
It sounds like we have a lot of pain in the same areas. My neurologist said the pain in my face that runs along the eye and cheek were caused by TN and the pain that goes through my ear and into my neck was GN (glossophyangial neuralgia). I too was sent from doctor to doctor to make sure it was not coming from my eye, which is always swollen now, or some other illness. All my tests keep coming back normal. My doctor will not write down an official diagnosis because he is convinced that I have some other major disease since it is so unusual to have TN, GN and fibromyalgia. Also he does not believe that swelling comes from TN either. I'm glad i'm not the only one with this swelling because I don't feel he is right about this. I only get the swelling when a severe pain attack is coming on except for my eye which like I said stays swollen now.
Penelope P said:
Hi:
I am new to all of this & am still to get the official diagnosis.....it will be a loooong time before I get my head around all the abbreviations, symptoms and treatments. With the state of pain my head/face is usually in, I doubt I will ever understnd much at all.....
So just to clarify: 'GN' in this case is Glossopharyngeal Neuralgia?
I am curious about swelling and TN: three years ago when my symptoms first presented, I broke out in a series of glandular like swellings to the side of my face, to the front of my ear, below my jaw and to my temple. This when mentioned to my first specialist an Ear Nose & Throat doctor (because I was having such horrible pain to my ear) dismissed me quite rudely. Suggestion of a possible TN diagnosis was swept aside with a grumpy "you don't have swelling in TN!" and that was that. It would be another 18 months before I felt strong enough to seek specialist help again, I felt so ashamed, insignificant and unacknowledged.
I only ever experienced obvious and prolonged swelling that once, during that first bout of the still yet unofficial diagnosed condition. So I presume I will never know if it was related or coincidental.
I'd love to know how common facial swelling is in regards to TN.