Over the past several years I’ve developed extreme persistent idiopathic facial nerve pain, or constant dull throbbing pain all over my face. It started at the bridge of my nose, sending shooting pulses to behind my eyes and eventually to my cheeks and lips. It feels like someone is tapping my face with needles and scraping my eyeballs out from underneath my skin. When I’m happy, it takes double the effort for me to appear happy because my lips make my smile feel numb. When I read, it takes double the effort to really see the words on the page because my eyes feel so droopy that I can only concentrate on trying to keep them open. This affects not only my physical wellness, but also my mood, attitude towards others, and my general well-being, every moment of every day. My nose bones seem to be growing my nose looks discolored, almost bruised - black and blue. But not everyone says they can see it. That's why some people think i'm crazy :(
While in the States, I saw multiple doctors regarding these symptoms but was offered no proper explanation. Each tried to convince me that I was crazy, giving me everything from a Neti Pot and shoulder shrug to nasal spray and a sideways-hug. With little hope left for a cure, I decided that the only thing that I could do was to brave forward and pursue my passions in life with an open mind, despite the chronic pain.
I left to live in Thailand to pursue a career in international development. Over time, my pain did not subside and I didn't know what to do. I saw an ENT who gave me nasal spray and finally a neurologist did a CAT scan and I was told I had a deviated septum. He said I may also have Trigeminal Neuralgia and prescribed me Neurontin. I was on it for a few months but then moved to Cambodia, where Neurontin is not sold. I ran out of the meds and basically stopped cold turkey. They didn't seem to be helping anyway.
This is really hard for me because I am only 24 years old but i've been experiencing this for years. I'm doing amazing things here in Cambodia but every day is so hard to wake up because of the constant dull throbbing. I can only be so strong for so long and i've finally decided that I just need to go back home to be with my family and to get proper medical attention. Before I do that, however, I will go to Bangkok to get some more tests done.
My question is .... what kind of tests should i get done and has anyone else been diagnosed with a deviated septum? I don't think that this is what is causing my pain but I am wondering if a tumor or something in my nose bone or cavity is what is pressing on a nerve to be causing all of this pain? I don't have medical insurance overseas but it iwll still be cheaper to do any tests here than it would be in the states.
I feel so alone and don't want to be doing any random operations or procedures on my own in a foreign country. I want the best medical advice but I feel like I am self-diagnosing and self-medicating. I dont want to be on any stupid meds, I just want some surgery and want this pain to go away! I also want my old face back. I feel like I have gotten so ugly. Please see the attached pictures ... any advice will be appreciated!!!
I should also mention that this has affected my every-day. I am irritable and get annoyed frequently. The only time my pain seems to subside is when I am eating and that makes me feel depressed. I exercise because I usually overate and I want to try to get my mind off of it but when I am finished, I feel even more throbbing. I don't feel capable of finishing tasks and have lost a lot of motivation. I fear losing control and I fear never being fully happy again. Does anyone else feel this way?
My facial pain problems all started with a really severe sinus infection - I was in so much pain I had tests in hospital to check it wasn't something life threatening and the sinus problem showed up on an x-ray. The infection caused a lot of pain and didn't properly clear up for a long time because (as it later turned out) I had a badly deviated septum. I had an operation to correct that, and the sinus infection cleared up. I also stopped getting nosebleeds which I've had since I was 6 or 7. However the pain around my right cheekbone continued and has now been diagnosed as atypical trigeminal neuralgia. I've heard people blame both the prolonged sinus infection and the surgery for the nerve damage, but I don't know how likely that is. I think the TN pain was there before the operation, but can't be sure because of the sinus problems and because it's now nearly 2 years since the operation and I can't be sure my memory is accurate.
I also found I got relief when eating and found exercise made it worse. I get facial swelling but more around my eye than my nose.
My diagnosis was based on talking to a surgeon (an ENT surgeon rather than a neurologist). She listened to my description of the pain and I had an MRI. She diagnosed ATN because when she examined my nose and sinuses and when she got the results of the MRI she couldn't find anything else, and she thought it fitted with my symptoms. I was also really worried that there might be a serious cause for all the pain I was experiencing, and the MRI was partly to rule out tumours. I was told that because the pain sounded like it was nerve related due to the location and the type of pain, the MRI was the best way to find out what was happening with the nerve and whether anything was pressing on it.
It is really difficult living with the pain all the time - I can completely relate to that. I have found it exhausting and have got very frustrated by not being able to do the things I was able to do before the pain. It is very hard because it doesn't stop and it makes everything else you do harder and more tiring. Don't give up and do go and see a doctor because you shouldn't have to live with that much constant pain. It can be difficult to get people to understand the pain, even doctors. I've been through the UK medical system and am still struggling with doctors, but was lucky to come across an ENT surgeon who had worked on a lot of cases involving nerve pain and therefore picked up on it quickly. I am not a medical professional, but it sounds like you should try to find another neurologist after what you have previously been told. There are other drugs that can help with nerve pain and you need someone to go through your symptoms and work out what is wrong and what the best medication will be for you. The one thing I've realised by reading people's stories here is that everyone is different and responds to different medication. I'm still trying to find the right dose/type of medication for me but I feel much more hopeful after reading about people's experiences that things will get better.
I hope this helps you. Don't give up - it can be depressing but there is hope that it will get better, it just might take a little longer than you want.
Ruth, that's very interesting about the sinus infections and deviated septum. It's hard to tell what can cause anything but sometimes it helps to at least get a piece of mind when you have tests done, hey?
My latest thing is that i'm reading more about "attacks" with TN. I don't necessarily get attacks like that, but just a constant burning, dull throb. I'm also wondering Ruth, can you feel your pulse in different areas of your face? I know pulsing is normal and that's why doctors think i'm crazy, but I literally feel the throbbing and can feel it when I touch my fingers to my face.
So this may be a stupid question but is it not possible to SEE the damaged nerves with an MRI? What exactly are they looking for? My thing is, maybe my nose has become inflamed/deformed because I have a tumour that is pushing the nerves, or making it bruised? What medications are you currently on and have you had any surgeries?
I really appreciate you taking the time to write out that message. It really helps to have that support at the end of the day.
I haven't had surgery for TN just septoplasty to sort out the deviated septum. I think what is most likely to show up on an MRI is whether anything is pressing on the nerve - blood vessels/tumours. However, I know that they didn't see anything like that on my MRI. I think there are some things that are very difficult to detect even with the MRI but I'm not a medical professional so this is all information I've picked up from my own research into TN or here. I know that some people including me get swelling in the side of the face where they get TN and I don't have a tumour, but I really don't know about your nose. I know that because of my deviated septum the turbinates in the bigger side of my nose swelled up to compensate and blocked the entry to my sinuses on that side. I don't exactly know what turbinates are but I know everyone has 3 each side of their nose and they can get swollen either because of something like a deviated septum or because of allergies. My nose problems were all identified on a CT scan, and tumours were ruled out with the MRI later. I was told by my ENT that the MRI was a good test because she could check both whether there was anything pressing on a nerve and whether I had any sinus problems at the same time, but I do know that she had to specify exactly which images she wanted to get from the MRI for the diagnosis she was doing, so you may need to speak to a neurologist or other doctor to find out exactly what angles/areas you would need to get if you had an MRI. It would be worth speaking to a doctor before getting further tests to get advice on what they would need to see in relation to your specific symptoms, particularly the swelling in your nose, so that you have the best chance of getting the answers you need.
I do occasionally get the sort of pulsing in my face that sounds like what you describe, and it is quite strange, not a normal sort of pulsing. Mostly I have what I think of as background pain - constant pain that is like something boring into my face. If it gets triggered by something I do it increases in intensity and becomes like a sort of burning along the nerve pathways. It isn't usually a sudden pain, it is pretty much always there and gradually intensifies or eases off. I take amitriptyline which helps the background pain, makes it less intense and easier to cope with. I also find it easier to sleep and it doesn't get really bad so often. At the moment it's quite bad and most things seem to make it worse so I'm spending a lot of time sitting still - lying down is one of the things that make it worse.
Everyone has slightly different experiences of TN and find different medications work for them. Some people have surgery successfully and some don't. But it is worth trying to find medication that works for you. I found the amitriptyline difficult to start with because like most of the medications it has side effects, but things are better with it, and it has given me hope that it's possible to live with TN.
In my experience there are several causes of TN and your nasal background I'm sure is one of them. You will need a FIESTA MRI w and w/o contrast to see anything IF there is a blood vessel pressing on the trigeminal nerve.
I think it's a great idea to go home and revamp. With a goal in mind you should be able to do exactly what you intend to (imo) ! Get to a neurologist, it is likely you will need anti-seizure meds..if your TN is typical you will have treatment options like gamma knnife, botox or MVD surgery. It will give you time to figure out what meds work for you and what treatments help you so you can get back to life. I would advise a neurologist this time instead of an ENT even though your problems MAY originate with your nasal area. A neurologist is better trained with TN. ANd neurologists "specialize" in different areas, like MS, neuropathy, migraines, etc. It's ok to ask for one that knows and treats TN. The TNA 's website is: http://www.fpa-support.org/ and they can help you find a neurologist in your area that KNOWS the condition. This is IMPORTANT. Then also find yourself a pain management clinic that offers TREATMENTS like nerve blocks and botox. Do not settle for LESS.
You have the rest of your life ahead of you...HUGS and MUC HLOVE, Julie
