Tired

I am new here. My problems started in November. I kept being told I had chronic ear infections. Something I have never had. This turned into vertigo and tinnitus. I ended up getting a balance test. It was normal. Then I started having pain with my upper left bicuspid and in part of my face. They did a root canal on this tooth- (and I think I probably didn't even need it)- and BAM-- my world as I knew it ended. I already have fibro and bipolar disorder that is called "treatment resistant"-- then the left side of my face EXPLODED. The root canal kept hurting. I saw 2 dentists- who said it was stable- fine. I saw an endodontist- He said- it is fine, stable. Give it a month to calm down. sigh. The pain became so unbearable that I ended up in a ER about 2 hours from where I live. They don't know about the bipolar nor fibro. Doctors who see this- think the pain cannot be as bad as you tell them. Also, they have access to all of your ER records etc... So, the doctor there said I had TN. She ordered a CT of my head and left ear. It was normal. I had a very extensive eye exam- b/c my left eye hurts. It was normal- I did need new glasses but I can't wear them. They hurt the area behind my ear and the root canal still hurts. My jaw bone hurts- throbs. The whole left side of my face throbs. Sometimes, my inner ear feels as if it is going to explode as well. The pain runs into the muscle of my neck. I no longer think clearly.

My family doctor placed me on Lyrica which has kicked my depression into over drive. I can't take Gabapentin nor Tegretol. I can't take NSAIDS. Most of the anti-convulsant drugs- I can't take. They use these for bipolar disorder also, and the side effects - are usually ones I can't manage. The other problem is they either induce mania or the doctor cannot get them high enough in dosage - so they would be therapeutic. I haven't seen one drug yet used to treat this on FB or in reading, that I can take. I am about to stop the Lyrica b/c truly-- it is pushing me under. It is a catch 22- . What benefit is the Lyrica- if it is making so bloody depressed??

I don't know if this TN has changed your quality of life. As I said, I am new to this. I just know since it all started, I can't think clearly- I want to knock out that root canal w/ an ice skate- and I'm in pain. I don't see a neurologist until June. If she thinks this is fibro or psychosomatic - I am screwed. I don't know what I will do. Surgery scares me- I have had enough of these. Are there any other options?? I just want PART of my life back.... I don't even leave my house anymore.

My pain is always there- I can't say for certain if the wind makes it worse. I read this often. I do know when the ear pain was so bad I always wore ear muffs- even if it wasn't cold outside. I also wonder about the root canal and the teeth around it. They say it's okay. It surely doesn't feel okay.

I am very tired of all of this.

xx

God Bless-

It has changed ALL of our lives. Check into seeing a neurosurgeon. If you can't take any of these meds, then you may need to go ahead and get the MVD surgery to take care of this. God bless and good luck. Keep me posted. You can friend me if you want. :-)

Yes, I agree with Donna, it has changed all of our lives.

Im sorry that you are suffering from several different conditions at the same time. I did not suffer from depression and so I cant speak to something like mania, but I couldn’t take tegretol, it made me feel like I was living in a cape of death. I was unwilling to try another anti-convulsant for quite some time but I now take Trileptal, a first cousin of tegretol, and it doesn’t have that dreadful effect. I also take the maximum dose of gabapentin and when I first started I just felt kind of dead, and like my brain was carbonated, but I persevered, even though I felt wretched and dull and lifeless at times, I stuck with it because the alternative was not tolerable. Sometimes it takes several goes at the meds and several combinations to find something that works.

I am now pretty good pain-wise until the afternoon or evening as long as I am not doing “all the wrong things”. I take a little tramadol mid afternoon as a boost. It gives me quality of life, and gets me over the hump. I am waiting to see a neurosurgeon, the prospect of surgery is scary but I want to know what my chances are.

Start a pain diary and figure out what your worst triggers are. Wind could be one but you might not know it right away. Some triggers are immediate for me, like cold and damp, my scalp goes into a frenzy, but others come on a half hour or so after being exposed, it takes a little detective work. You need to know what your triggers are, and make changes to avoid them.

It also helps to take the list of triggers to the doctor. Anything concrete helps them understand. My GP had a hard time getting it until I told her that the vibration from driving or even being in a car is a sure fire trigger. She got that right away. Before you go to the neurologist in June make a document of how, when, where, you feel the pain. Make diagrams. Be clear. Sort out the different symptoms: this is ATN pain, this is fibromyalgia pain, this is bipolar disorder. Also try to figure out how they overlap.

I have some secondary depression now since being struck with this illness, and I always press that point with anyone who wants to chalk my condition up to something else. First I got pain and it changed my life, then I got low. I have moments when it feels like my life is over, but I work at keeping out of the trough by sorting out what is pain, what is depression; how they can be the same sometimes but are also different. We need to make this distinction ourselves and not let someone else tell us what it is we are feeling.

I think most of us have teeth and gum and tongue issues. Sometimes I’d like to take a scalpel to them, but nothing is wrong with my teeth. Look at diagrams of the trigeminal nerve in Google Images, you will begin to understand. The more I know and understand the less helpless I feel.

I don’t resist the side effects of meds, I live “around” them now. I am slow. I am forgetful. But I am still me. I keep busy with quiet activities. I have developed my own version of meditation to quiet my mind and be present with the pain and be okay with it. Not good or great with it, just okay with it, that is enough, that is how my life is right now.

I stick pretty close to home too. I live alone but still recognize the need to be social. I need to laugh and share and gossip a little, just like anyone else, so I have learned to run a “pain track” at the same time I am engaging with someone. Most of the time no one would ever know that I am on fire. That glass is breaking in my mouth while I’m talking. That a bolt is being twisted between my ear and my throat. That something like lightening might move through my face so quickly that it almost doesn’t exist, except that it leaves a trace that builds and builds in intensity until its a deep groove. So I can’t be social for very long, but I make a regular effort. And then I must dive for bed and recover. I have a willingness to do this over and over again because I want to live a good life, despite how desperate the pain can be. I still travel to visit my family and friends. I take extra meds and extra time. I crumble, then I get up and do it all over again.

I am beginning to ramble here but I want you to know that you are not alone in being tired of all of this. And some days it seems that nothing works or is ever going to work, but there is always something to help a little, perhaps a lot.

Go Gently
Bellalarke

I am also sorry that you suffer many things. I was told as well that I had TN. I could not take the meds. My MRI was normal. I was in extreme pain. Saw a dentist, 2 oral surgeons, 2 Neuros, a periodontist, an trip to to the ER. I also saw a endodonist and had a root canal. Still in pain. Finally had the tooth pulled and have been pain free since. Turns out that I had a micro crack. Hope things turn out well for you.

If you can stomach it when your pain gets bad, try drinking coffee, tea, soup.. that sort of thing. or use a heating pad on the side of your face the pain is the worst on. I have had issues with TN most of my life, but I think my problems got worse when my wisdom teeth had to be pulled. Around this time I also had a hairline fracture in my jaw.. so.

Barometric pressure changes can set off flares, big time. Sometimes even the foods you eat can.

Hi again Beekeeper (do you really keep bees, BTW?) - I was just reading through some older posts and about your tooth pain. My original nightmare started with oral surgery for gum grafting on a tooth with a root canal. A few days after the surgery it felt like the root canal was acting up (and it had been done years before). To make a long story short, I had the root canal redone and then eventually had the tooth removed before my first MVD. Everything was great for almost 10 years and then the pain came back...yep...the very same pain that I had before the tooth was pulled. Since there is no tooth present, it has to be the nerves. The whole area is innervated by the 2nd branch of the trigeminal. Feels like a hot poker is being shoved up in the root of the tooth and then the roof of my mouth just burns like fire. Sometimes, cold (popsicles, ice cubes) will help the burning. It is just so frustrating. And I know what you mean about just being so tired ot it all. I sincerely hope you don't keep getting root canals unless they can prove that it is needed. And hope it is not osteomyelitis either! you really need to get an MRI to look at the trigeminal nerve. I pray that you find someone that will do the proper tests for you. Hope tomorrow is a better day for us both!