Then I wake up to sharp pains in my ear, head, and face? It's making me so dizzy and nauseas. I don't think the Tegretol, at this point, would be making me feel this dizzy.
I reprinted out the attending physician advisory form for nothing.
I'm not even sure if it works at my hospital because they already hate seeing me there.
I feel like such a bad person every time I walk in there, but they don't understand and I feel like no one does except you guys.
My mothers constant "there's nothing I can do" is really starting to get tome and all I want to do is cry, but I can't. My head hurts too badly to cry and let it pass.
I am so sorry. I know how you feel. I was in the same boat as you last week. I was ready to give up. I felt the same way as you about my mom, my husband, everyone. I printed out information on TN and let them all read it. I also sent them links to videos of people in pain on youtube.com. I feel like every time I go to the doctor or ER they think I am a pill chaser. In reality, I hate taking pain pills, because of the way they make me feel. Go to the ER, tell them you have researched this disease and you want Amitriptylene and Carbamezepine or at least the Carbamezepine. It will take a few weeks for the meds to work or that is what I am told. I have no pain meds. My MD took mine that the ER gave me yesterday and disposed of them. I hope you get some relief. Try 4 Motrin. That is what I was doing before. I was diagnosed a week ago...I so know how you feel. I know you don't know me, but if you would like I could give you my number and I will listen and you can listen to me. I am so sorry girl. Prayers for you and hugs to go along with them. I keep telling myself...God will not put you through more than you can handle....he chose me because he knew I could handle this. He is sure testing my intelligence though, lol...
I would love to have someone to be able to talk to about this. I'm on Carbamezepine already. My neuro has even doubled the dosage and it's not working. He claims that if this doesn't work, that it's not TN at all. Plus I ended up telling him that i have it on both sides and he said that's very rare and he may treat me for something else. I try motrin, advil, tylenol, Naproxen, rubbing vapo rub by my ears, hot & cold compressed, and even drinking something hot. Nothing seems to help it. I've been to the ER twice for the facial pain.. in the last month. I'm starting to think they don't believe me and it sucks because whatever they give me there, actually helps for the rest of the day and then I'm screwed again.
JLT said:
I am so sorry. I know how you feel. I was in the same boat as you last week. I was ready to give up. I felt the same way as you about my mom, my husband, everyone. I printed out information on TN and let them all read it. I also sent them links to videos of people in pain on youtube.com. I feel like every time I go to the doctor or ER they think I am a pill chaser. In reality, I hate taking pain pills, because of the way they make me feel. Go to the ER, tell them you have researched this disease and you want Amitriptylene and Carbamezepine or at least the Carbamezepine. It will take a few weeks for the meds to work or that is what I am told. I have no pain meds. My MD took mine that the ER gave me yesterday and disposed of them. I hope you get some relief. Try 4 Motrin. That is what I was doing before. I was diagnosed a week ago...I so know how you feel. I know you don't know me, but if you would like I could give you my number and I will listen and you can listen to me. I am so sorry girl. Prayers for you and hugs to go along with them. I keep telling myself...God will not put you through more than you can handle....he chose me because he knew I could handle this. He is sure testing my intelligence though, lol...
I know honey...Yesterday was my 4th doctor/Er visit in a week. I was originally diagnosed with an ear infection. I have read that it is rare for TN to affect both sides. You just need to find a doctor that is familiar with the disease. Have you had any CT scans or MRI's? I had a CT scan and that is when the 2nd physician told me I had TN. I am so sorry. I will PM you my number. We can cry together lol...
Taylor - Bi-latteral - both sides is not so rare on here -- they have a bunch of postings you can read under the groups tab
Also, go to google images - type in trigeminal neuralgia - find the graphic that fits you best and show the doctors
On the doctor's tab above - is there one near you that is recommended here?
If nobody wants to give you a major narcotic -- Tramadol or Codine have worked for many -- and for Possible Instant Relief - Topical Lidocaine - patches or cream
The more you read and learn
The more you demand for your pain to be better!
You are the customer! This disease is only 12 in 100,000 people - so most do NOT know what to do for you
Taylor, although Carbamazepine can be used as a diagnostic tool, it does not work for everyone. It is more that if it DOES work they can agree a Dx of TN, not the other way around. It is not your fault you have a rare illness, but it is the fault of your dr if he/she will not provide effective help for you. Don't let their incompetence be blamed on you. I always hand my problem back to the care provider. I am the customer and they need to help me, if I could help myself I would!!!
Taylor Rose Lachina said:
I would love to have someone to be able to talk to about this. I'm on Carbamezepine already. My neuro has even doubled the dosage and it's not working. He claims that if this doesn't work, that it's not TN at all. Plus I ended up telling him that i have it on both sides and he said that's very rare and he may treat me for something else. I try motrin, advil, tylenol, Naproxen, rubbing vapo rub by my ears, hot & cold compressed, and even drinking something hot. Nothing seems to help it. I've been to the ER twice for the facial pain.. in the last month. I'm starting to think they don't believe me and it sucks because whatever they give me there, actually helps for the rest of the day and then I'm screwed again.
JLT said:
I am so sorry. I know how you feel. I was in the same boat as you last week. I was ready to give up. I felt the same way as you about my mom, my husband, everyone. I printed out information on TN and let them all read it. I also sent them links to videos of people in pain on youtube.com. I feel like every time I go to the doctor or ER they think I am a pill chaser. In reality, I hate taking pain pills, because of the way they make me feel. Go to the ER, tell them you have researched this disease and you want Amitriptylene and Carbamezepine or at least the Carbamezepine. It will take a few weeks for the meds to work or that is what I am told. I have no pain meds. My MD took mine that the ER gave me yesterday and disposed of them. I hope you get some relief. Try 4 Motrin. That is what I was doing before. I was diagnosed a week ago...I so know how you feel. I know you don't know me, but if you would like I could give you my number and I will listen and you can listen to me. I am so sorry girl. Prayers for you and hugs to go along with them. I keep telling myself...God will not put you through more than you can handle....he chose me because he knew I could handle this. He is sure testing my intelligence though, lol...
I was also given carbamazepine as a diagnostic and it didn't work. But it was explained to me that it is a diagnostic for TN1, as they were trying to decide whether an MVD could help me. I really wanted it to work, but it didn't and we decided against the surgery. However, we just proceeded to other drugs after that -- I have been on just about every one.
However, you need to find someone to treat the pain you're in, those medications you're taking on your own probably won't help and are bad for you (damage your stomach, lead to rebound headaches) when taken too often.
My doctor tried me on Tegretol and it helped with some symptoms, but made me have other symptoms of glossopharyngeal neuralgia every time we increased the dosage...soo I had to stop taking it. Now I am on Trileptal and have been for 8 months and am doing fine with it.