Ok so I have never done this before so please bear with me I am having a bad flare n the pain has been nonstop and a lot of times it burns like acid in my face and ear if I touch my face it feels like I am burning my imprint onto my skin I haven’t been able to let my teeth touch for right at 3 months I haven’t slept all night in just as long although the past 2 weeks the longest I’ve been able to sleep at once has been no longer than 2 hrs past that it’s been 15 minutes intervals. I was so exhausted and in so much pain I couldn’t take it and broke at work I started shaking and crying even though I know it makes it worse and had to be taken to the hospital and beg them to make it stop. I got looked at and treated like a liar and a druggy even though I told them I didn’t want pain pills I needed an anti inflammatory and trying to explain what I had how I knew what I had who diagnosed me when what did they say before they would try to help me he just sat there and studied me while I was doing my best not to scream or hurt myself to be honest yes I was at that point. When he finally agreed to help me another doc came in after they gave me a steroids shot and a pain shot even though I told him I didn’t want that anyways the other doc came in and was trying to talk to me about my bp I was past stroke level and it wasn’t coming down as well as they wanted it to even though I tried to explain to her the no sleep and intense constant pain was the cause they still kept me and wrote on my chart “headache and slight facial pain” wth no one would listen to me cept for a few nurses who were able to help me. They sat with me for I cried and got me anti inflammation shots and they helped so much. Then after testing in the morning then the doc came in and I was in a lot of pain again so I with as crying and rocking and he sat and asked me what was with a strong with me and again had to explain and beg for more anti inflammatory meds ugh . So they let me out finally with some ibuprofen and tell me to try to take it easy. Ugh again see not only do I have trigeminal neuralgia I am a diabetic have PCOS and high blood pressure so when my TN acts up it flair everything up with it cept the PCOS that is it does its own constant things that I have to deal with but nothing I can do about it but deal but everything is getting worse and I am having a hard time dealing with it all and my family is beyond worried and they are trying to talk to me about taking short term disability at work but all this does is making me feel weak and that TN has taken over my life and I hate that I have never let things that have been wrong with me take control of my life and I hate this feeling I’m waiting for an opening with a neurologist to see if there is anything else I can do but I hate the worried pity looks I get from everyone especially if I start twitching but mostly the looks come from family and friends who know what is going on but have no idea what I’m going through. Does anyone have any suggestions for me in helping deal with this? And I am thinking very hard about the leave from work but it does make me feel weak doing so ugh I don’t know what to do anymore
Hi Katie, I'm so sorry things are so overwhelming right now for you.
From experience I can say that not sleeping for prolonged periods of time was very hard on my spirit and my mental health. Landed me in the hospital back in '92.
Temporary Disability makes sense. You are at your breaking point, and it sounds like you are having a hard time functioning at work. Time out to take care of yourself. Of course, work provides so much of an anchor for identity, sense of worth and so forth, it is a hard step to take -- a strong step to take.
My heart goes out to you. I too had trigeminal Neuralgia and was very insistant on getting results. I spent a lot of money in doing so. My doctor tried Topamax and it seemed to send the TN into remission. I had the operation MVD before it had a chance to come out of remission. I don’t remember the dosaged but The Doctor was Dr. Sunil Patel at MUSC he knows all about TN and in very caring and proactive in getting the BEST results for YOU. Will be praying for your healing.
Hi Katie…
I am so sorry you are going through this…it is overwhelming and scary. The not sleeping part just makes it so much worse. Wth you BP and diabetes…I would totally take temporary disability. It does not mean you are weak, at all. It means you are listening to your body. Your body is telling you to slow down, I think. I would research and try to find a reputable doctor that deals with chronic pain. Sadly, most doctors only have less than a day of lectures about TN and don’t know what they are seeing, let alone how to treat it. Mine ran out of control for well over two years and now I can go periods of time where I am almost ‘normal’. I have a great doctor, though. Much luck to you, many prayers for you, and remember, spontaneous remissions DO happen…so never, ever give up!
Saber
I'm so sorry you are in so much pain right now, Katie. I do understand how you feel. So much so that it is hard to read your post because it takes me back to my last flair which makes me feel very anxious to even think about. The worst part is that there is so little help for the pain, and hospitals don't even know much about TN if at all.
If you are in pain but you don't like being at work because of pity looks etc., then you should take a leave. I can't even imagine going to work in my worst TN condition. I could not even function. So, you are brave to have toughed it out. It also takes strength to recognize when you have had enough and do something about it. You have to do what is right for you and not worry about what other people think.
I wish you the best and hope that you get some relief very soon.
I'm so very sorry Katie as I know what you are experiencing. Your attacks sound much like what I was going thru for a 5 week period without relief and one attack after another. Fortunately, I was seen by a Neurologist who Diagnosed me with TN and related nerve problems spreading into my throat. It felt to me like I was trapped inside a hornet's nest on the right side of my face and my upper and lower jaw/teeth. I was initially put on Topamax and then added Tegretol. Thankfully, my attacks subsided and now are just occasional and not very severe.
In my experience, pain medication doesn't work very well and yes, there is a stigma anytime a patient presents pain at the ER because so many people abuse the ER for meds. TN isn't well understood by many physicians who are in the ER and even in GP. I take several kinds of anti convulsants and Lyrica for nerve pain but nothing helped but the 2 above mentioned drugs. This is my experience. I hope that you can see a Neurologist as soon as possible for a correct diagnosis and treatment plan to make sure you don't have an underlying problem causing it. I believe that any kind of nerve disorder can trigger this as I have seen Diabetics and others like me who have constant Neck Pain and disorders who seem to be the victims of this horrible disease. If you are unable to eat, at least make sure you consume a nutritional drink so that you don't get dehydrated and malnourished which will only cause more problems like I did. I wish there was something I could do for you but know that you will be in my prayers and please see a qualified Neurologist for this as it will be most likely your best hope for proper treatment and control. As far as your work, I can't imagine how you are able to tolerate these episodes working. Stress makes them worse and most people isolate with TN from what I have seen because the pain cannot be understood by anyone who hasn't experienced it. It is a debilitating disease for sure and if you have short term disability, perhaps you should give yourself that break to get this under control. I hope you will keep us informed on how you are doing. Best Wishes.
Katie I felt like I was reading my own story. I just turned 30 and I too have PCOS. Most people don’t even know what either one of the things we have are. My family has been pressuring me about disability But so far I have been fighting getting it. As you probably feel too, I don’t want to be on disability when I am 30. I also know from all the times I have been laying in my bed screaming that nothing we say on here is going to help much. Please know that all of us are here for you And pushing for you. Most of the drs are no help because we are so young they question that we have it. But you will find one that will help you! I am also on 2 amazing support group Facebook groups one is for young people with TN which helps a lot. DO NOT GIVE UP! I know it feels like a losing battle sometimes but we are the strongest people there are. We deal with this everyday. In dealing with this for a year I may have the highest pain tolerance of anyone I know. One more year and I may be iron man 
just please know that people care about you and are sending prayers and hugs from all over the world now. If you want to talk or vent or anything let me know And I will find a way to privately contact you and give you my info. I am fairly new to this site.
Sending prayers and hugs!
Erin
Trigeminal neuralgia ( or atypical facial pain depending on which of my 284927364 doctors you ask ) since Feb. 2014
Where do you live? Is marijuana legal? The only thing that helps a friend of mine is smoking marijuana. Not legal in her state yet, but hopefully it will be legal everywhere very soon. She only smokes enough to make the pain go away. She also does acupuncture for her mood. She has severe ear pain. She was diagnosed with Geniculate Neuralgia. She had surgery at the Mayo Clinic. They cut her intermedius nerve. She was pain free for a month, but then the pain came back. Doctor did not want to do more surgeries because he was afraid she'd have facial paralysis or loss of taste. He put her on Tegretol. Did not help and she was like a Zombie. Was dizzy and sleepy all of the time. She has told her doctors that Marajuana helps. They say they understand why she smokes it, but can't condone it because it is illegal in her state, yada yada yada. She does not like sneaking around and doing it because it is illegal, however, it is the ONLY thing that helps. She has been on dozens of different medications. Marajuana is the only thing that STOPS the pain. ON good days, she only smokes once a day. When it is raining or very humid, she does it twice a day. I have visited her and I can't even tell after she smokes. She is not silly or high, just content and pain free.
I hope this helps you. My friend struggled with this pain for over a year and a half. She has finally gotten her life back thanks to the Marajuana.
With 4 procedures I also suffer with the same thing. Everybody is different on how they handle meds. What I have found when I have the burning I put a heating pad on the right side of my face. Second I have slowly worked up to 225 mg of Lyrica since 2007. I take Clonazapam for anxiety and time release Ambien or Zolpidem. For my gums and teeth I keep a Kanka SoftBrush Gel with me at all times. It helps numb for a while. Getting enough sleep is what helps me to cope with the next day even though I am in pain all day. Towards the end of the day I get worse or the more tired I am. I was told by my pain specialist that I really take very little meds compared to most people with this kind of pain. I would suggest you go to urgent care or the ER and have them give some IV pain med to break the cycle. I hope this helps. Oh, and stress can make things worse.
I would carry a medical description of TN with me and hand it to anybody that did not understand what I was going through. Tegretol doesn't work for you? I can't stand the side effects but it does kill the pain for many people. Now I just take a light dose of Gabapentin and get along pretty well.
I used to think there was no future, I would do anything if I could get rid of the pain. Now I have it under control and life is pretty normal. I strongly suspect there is a pain free future for you, too.
My husband had non invasive surgery and is now pain free. It was done in Philadelphia but I am sure you can find a doctor near you. You can email me for more info
Hi Katie,
I can completely relate to how you're feeling. If you have the option, take the disability. It by no means says you're weak, it is saying you've got a problem you're trying to get help for. The combination of the constant pain and the exhaustion is so overwhelming that is makes it nearly impossible to cope, you're not doing yourself any favors trying to gut through what is the most painful condition known to man. Take the disability, you'll be glad you did.
Good Luck,
Mojo
Lyrica 50mg, twice a day
Hi Katie,
I pray that you will overcome your ordeal. I was able to free myself from pain for 11 months now through NUCCA or Upper Cervical Chiropractic. It is non-invasive and not the conventional type of treatment but it has helped thousands of patients dealing with nerve problems and spine. Look them up http://www.nucca.org/
Good luck!
You need to go to a neurologist. If you have trigeminal neuralgia, you need cabamazepine or like medications, not an anti-inflammatory. If you need a referral, call your primary physician for one. I have been there, even to the emergency room. They are worthless, purely worthless. You need an anticonvulsant. It works on the nerves to control the impulses that are causing this. Please get an appointment with a neurologist who has dealt with TN. My primary wanted to touch my face. I could not believe she was that stupid. That is why you need someone who is very familiar with this. I am so sorry that you are having this pain. I also broke down at work. It is that devastating. TN does not, for the most part, wake you up at night. You really need someone who can give you a good examination. May God bless you and lead you.
Katie, I am terribly sorry you are struggling like this. I can see the exact looks you are seeing and feel your frustration, pain and desperation. The best advice I can give you is to keep calling the neurologist's office and check for cancellations and take that leave from work until you can get some help. As I am sure you know, stress makes EVERYTHING worse, even if you can only reduce it a little, it can help a lot. I would also be in touch with the family doctor, mine was able to get me on some of the much needed meds before I ever got into the neurologist. I pray you get some relief SOON!! Meanwhile, just know that you are not alone, just reading some of the discussions on this site helps me. When I can see that there really, truly, are other people in the same boat as I am in I feel like I can fight a little longer. Try to remember that you are not alone!
Hi Katie
I was at your point only 6 months ago and I feel deeply for you. However, sometimes things can turn a swift dogleg. I shuttled between Doc, Neurologist and Dentists until we got a lucky break. I DEMANDED that they remove an offending tooth that had even started to loosen and the xrays showed nothing - not even at the greatest magnification - all but the tiniest shadow . They pulled it and , lo and behold there was the cause of the inflammation - abcess ...after just 2/3 hours the pain started to dissipate ( I was in masses of Tegratol too). The point was - there was nothing showing - at all!!
Now, I'm not saying that this is your solution, what I AM saying is that the darkest hour is always before the dawn and, sooner ( I pray) or later, you will get rid of it. Persistance, pet.
I hope this helps
Kindest regards
Nick ( Ireland)
I know exactly how you feel. My flares usually last for months with no relief in sight. But then there’s a break. I get steroid shots in. U face and they have helped in the past. I’m up for gamma next week. I always get the dr’s who take one look at my medicines and auto automatically think I’m a drugee. When I get those dr’s I become mega bitch. I quickly cut them down and let them know they r dealing with an intelligent mom and wife that will quickly make a complaint about being discriminated against. But I know I will always get that, that’s something I’ve learned to deal with. My family dinamic has changed since my TN. When I get bad flares I have no choice but to run to my room, close the door and all I can do is scream till it lets up. When it hurts all I can do is wish for death it feels like it will never end I know. But it does end. It does get better. I’m on Triliptal and some pain meds. It’s all helped. Yes I still have flares. I’m also on disability. I don’t see it as giving up on myself, I see it as accepting the new me. I have TN and no matter how hard I wish I didn’t I know I have to accept and deal with my diagnosis. As far as family, my husband understands but only after having long talks with him about it. I think I must’ve printed out the equivalent of two trees of information. But having him read about it and read about what it does has helped him better understand that it’s not on my head and that it’s real. I also do homeopathic oils that have helped too. I put the oils in a diffuser to help me relax and calm down. I also know what makes me flare, that took a long time to know. My #1 flare is stress. When I stress I flare. I try to avoid stress like the plague but when I do encounter it I’ve learned some destressing tequniques. As long as you keep trying to find out what helps you, your winning over this condition. Don’t give up. It took me years to learn that. Even coming on this site helps. If you have to vent then this is the safest place to do it. We all understand what your going through because we all are going through it. Going to a neurologist will help just make sure you get one that knows about TN and how to treat it. I had to go to two, the first one dismissed me and said I didn’t have it. I quietly walked away and said your fired and found another one. Just don’t give up. I know it seems almost impossible to do that but keep fighting, keep going. I care, we all care about you here. Keep coming back. I’ll fight along with you because I care.
Hello Katie,
I was so sorry to read about your experience and I applaud you for trying to get your message across to the medical staff regarding medication. I remember seeing a special form to give to the staff when you're in the middle of an attack and hopefully it will help them understand TN a lot more. If I find the link, I will pass that on to you.
As for recommendations, we have a top notch neurosurgeon here in Oregon at OHSU (Dr. Kim Burchiel) who could possibly help you, or at least refer you to someone in your area. Dr. Burchiel is incredibly knowledgeable about TN and is an expert in this field. While I did not have to have surgery, he was the one who diagnosed me with TN.
On a side note, through a local neurologist, I was diagnosed with Vitamin B-12 deficiency and accidentally found out that my TN pain is directly related to my B-12 levels so I keep them in the 900-980 range. Too low or too high and I get zapped. I think it's been about 3 years now, since I've had an attack. I don't take B-12 shots--just 2 tablets of Jarrow's Methyl-B-12 1000 mcg every day. To find out if you are also b-12 deficient, ask for a blood test BEFORE any supplementation or you won't get an accurate reading. This won't work for everyone, but it is something to consider.
Just know that there are many people out there who can relate to what you are going through and there is help available! Also, if you have a free EAP line (usually provided through your employer) you can call them to at least be able to tell someone what you're going through and they may have suggestions for dealing with your family members and medical staff who don't fully understand what you're going through. I applaud you for seeking help because I have no doubt that you will find it!
I'm going to start praying for you--just know that we understand.
Cyndi
PS. I found the page that has the link for the form to give to ER staff: Go to the DOCTORS link (top of the page) and click on Doctors Advisory Form. You will find it there. God bless you!
As you see Katie, there are many that understand what you are dealing with. The pain is horrific and few that have never experienced it can comprehend it. I had MVD surgery 3 years ago for my TN -- problem solved there however the twinges are sneaking back into my life and I have developed Occipital Neuralgia because of scar tissue and have migraines daily. This will be taken care of on the 16th of June and I pray to get to some point of neurological stability.
You MUST take care of yourself -- if that means a break from the workforce, do it. You have to have your physical and mental strength to fight this demon. Know that the members of this group WILL support you and WILL listen and DO understand the terrible journey you are on. However, there is hope.
You will be in my prayers.