Desperate for help:(
 

Hello all, I'm new here and was hoping someone would be able to help me. I'm not sure what I have is TN but maybe someone will recognize my symptoms and be able to steer me in the right direction. Unfortunately I have no insurance and am very poor so I cannot see a doctor for awhile but I am in so much pain and not knowing what's wrong with me is really taking a toll and maybe if I knew where to start or which kind of doctor would be best I can try and see one.

Four years ago I got a total TMJ replacement and had major facial nerve damage. I was never told anything about my trigeminal nerve, just told that I had facial nerve damage. I suffered from a sort of Bell's palsy where I couldn't move the right side of my face, most of that cleared up except for around my eye and eyebrow and around my chin. None of that caused me pain however up until a few months ago. From my surgery I had to start using eye drops because my eye didn't blink all the way, I got a gold implant put in so that solved it but I still used eye drops here and there with no problem. I noticed though that around 8 months ago the drops started causing intense pain in my eye so I though I was having a bad reaction and stopped using them ( I didn't really need them anymore anyways) that seemed to help but then about a month later that same pain started happening at random times, maybe about once a week. Progressively it started getting more frequent and the pain was SO intense, I can describe it as sharp, burning, throbbing, electrical pain in and around my eye. My eye also waters really bad, my nose runs like crazy and my eye starts spasming. It gets really red and swollen and this lasts about 15 minutes. I notice that it happens now almost every time I eat. It seems to be a trigger? Also, drinking anything, even water, wind, cold, sun, and smelling food are also triggers. I get it now about 2-3 times a day and the pain is getting so intense that I have to go somewhere private because it causes me to scream. It's getting worse and I am so terrified the whole day anticipating the next one and so afraid I will get more and more episodes. I've stopped eating and drinking in public, I'm afraid of eating even at home so I limit how much I do and now it's happening at work and I'm afraid of losing my job. Sorry for going on so long but I am hoping someone will recognize my symptoms and let me know if it sounds like TN or maybe something else nerve related, I have no idea what else it could be. I've done research and it sounds like maybe it's a 50/50 chance it is, it's so hard to tell on articles. Thank you so much in advance.

I am so sorry you are having so much pain! I think you need to find a way to see a neurologist. It is very important that you get treatment, particularly if you could lose your job because of what is happening! Do you have family or friends you can borrow from? I think, too, that if you go to the emergency room they have to treat you even if you can't pay. Maybe others here can be more helpful... I hope you find some help soon!

Thank you so much for your reply! I have gone to the emergency room and they basically let me go saying I need to see a specialist and they couldn't do anything. I wish so much I had friends or family that would help but I don't. The ironic thing is, I work in a neurologist clinic (janitorial work) but still don't have the funds to pay for a visit. I think it hurts more going in there everyday seeing others get treatment and knowing I can't. I'm searching for another job now to try and save more money, but I was just hoping maybe someone on here had these similar symptoms so I know if I'm even on the right track. thanks

I have similar problems, I wish I could give you a answer, my doctor says I have ATypical TN because my eye pain is constant, I have been to the emergency 3 times at least because I can't handle the pain, it is with me 24 hours a day and behind my left eye, I live in the uk and have just had an MRI to rule out anything else, I am waiting for the results but the wait to see the neurologist is going to be a few more weeks, fortunately here we have the nhs, unfortunately it means we have long waits which is not helpful especially when trying different treatments if one isn't working.

Hi roxygirl
 

I hear you. TN is serious, and so is your pain. I agree with the post before me. You need to get into see a neurologist. This can be done. I am not saying it is easy, but it can happen. I didn't have insurance either due to pre-existing conditions. I went to my local rural health center. From there I got a referral to a neurologist. Also if you are working, there are organizations that will pay for your office call, and for treatment, if you can go back to work. I did this so I know it is possible. Your town may also help you. I had an auction, which helped pay for my first spinal fusion. This was through friends that just made up their minds they were going to help out. It got me in the door to the neurologist, and the doctor himself lowered the price of the surgery because I asked him to. I was extremely assertive, as my quality of life was at stake. I could not take the pain either. Call your congressman, he may know of community help centers to get you in the door.
Don't be afraid to use your local ER room as well. Perhaps the doctors there can get you into see a neurologist as well. I used the ER more than once while I was trying to get the help.
Don't give up. Try some of these things. I am as poor as you are, guaranteed.
I now have disability and finally get the medical care. It is a long road, and not so easy, but there is help there, if you start calling around. I will be here to listen anytime you want. There are also womens' resource centers in many communities that may have direction. All my best to you. You will be in my thoughts and prayers. ginnie:hug:

Do you live in the US, and if so, are you on (or do you qualify for) Medicare? You can call Medicare and ask for the names and phone numbers of doctors in your area who accept Medicare patients.

What you describe is pretty typical for Trigeminal Neuralgia (TN), though it may be a variant that involves your facial nerve. The most common medication for TN is Tegretol (carbamazepine), or sometimes a derivative of it called Trileptal (oxcarbazepine.) However, these are somewhat expensive medications, so it might be worth asking about Elavil (amitriptyline), which is a very inexpensive medication commonly prescribed for nerve pain.

Generic Neurontin (gabapentin) may also be helpful, but it's fairly common to have to try various dosages until you find one that works.

Best of luck - neuralgia is an awful pain to have to live with.