I need to vent.....I have had a horrible day of pain ALL day today. I called my doctor first thing this morning with no response all day. I don't know what to do, I know I can't deal with this pain EVERYDAY. My insurance won't allow me to go to anyone else without a referral. I feel like no one understands. My husband works out of town during the week. I work from home. I feel like i am neglecting my son in the evening (that is when my pain is the worst). I just really want to run away.

Vent away, you know I can completely understand. Not only do we have to endure episodes of extreme pain, but we also have to deal with the frustrations that come with it, too many to list…
When my TN first presented my children were younger, it was so difficult. Being so independent it took me awhile to learn how to ask for help. We didn’t live near our families so I ended up asking friends for help, there were days and nights where my children had sleepovers at friends houses, I felt horrible about it but I had no choice.
My kids loved it because they could play with their friends. I felt guilty but they didn’t think anything of it.
We have to ask for help. It sucks, but you know you would do it for someone else.
What meds are you on?
Perhaps when you see your doctor next you can establish a plan with him/her for when the pain increases what you can do.
My neuro does this and sends the plan to my doctor as well. It doesn’t always work but at least you know of something you can try whether it’s increase the meds or add a new one.
Call your doctors office and be very firm that you are in excruciating pain and need to speak to the doc ASAP even by phone remind them you have TN .
You probably already did this…
Just know you’re not alone. I hope your pain eases for you today…thinking of you.

MiMi thank you for listening. I went to the ER today. He gave me Oxycodone/Acetaminophen and Ketorolac and he also gave me a shot of this. I had the worst night I’ve ever had last night. My Dr wouldn’t call me back so I really had no choice. I’m going to call my insurance on Monday to see about switching primary care physicians. I need one that is going to help me not ignore me. My husband came home early last night from out of town and he has helped me a lot today. My pain meds just aren’t touching the pain. I’ve got to find someone who is familiar with TN.

Oh I’m so glad you went to the ER ! Did the meds work a little?
Yes you’re absolutely right try and find someone new ASAP!
Wishing you some relief soon,

Jtl…so sorry that u are in so much pain…as far as meds you may want to ask your doctor about gabapentin and i know the er gave you percocet those two meds combined does the trickfor the pain thats what i take as of rite now and that does the trick…i hope this helps and hope that you are able to have some pain free days

The meds worked last night. I was able to get some sleep. FINALLY! I have the nagging pain this morning, not the sharp shocking stabbing pain that I've been having. Let's hope it stays this way today, I have a birthday party to go to. He did a CT scan yesterday as well, to rule out a rupture of something in my sinuses. I just have a crummy physician that I HAVE to get switched.

Glad you had some relief and a good night sleep. Hope you continue to feel better!!!

Hi Jlt,

Just curious if you are on any nerve medications such as Neurontin or Tegretol. Oxicodone doesn't even touch my pain since TN is nerve related. I went to the ER when I first experienced TN and even Morphine didn't help.

Hope you're feeling much better today and find a drug (and a doctor) that helps. Keep us updated!

~ Vicki

ill run away with you :) I know what you mean about feeling like you are neglecting your son. I have the same feelings. My son asked me today if i was going to die or commit suicide. I couldnt stop crying. He also asked if he would get this when he grows up. Hang in there as pain free days will come and you make the most of those.

Thank you! I have rested well the last 2 nights, yesterday I had an okay day, and today isn't too bad so far. I finally got in touch with my doctor yesterday and I have to go back in tomorrow morning so she can schedule me for an MRI. Mind you, I was just there last Tuesday. This is ridiculous. This will make 4 doctor visits in less than 1 1/2 weeks. No Vicki, I am not on any nerve medications. I take blood pressure medications and that is it other than what they have prescribed me for this. All the pain medication is doing is make me sick to my stomach. I have a lot of swelling in my face. To the point I don't want to go in public. I hope everyone is having a pain free day :-). Today is the first day I have drove since last Tuesday. I took my son to school this morning. Small steps, right? lol..

Oh and I was able to switch physicians. However, that doesn't take effect until 11/1.

JLT, you are not alone. I'm going through same thing. I am getting some relief with oxcarbezipine and Cymbalta. Still hurts but can at least handle it. They will adjust until no pain. I'm thinking weather, temp change, sinus made worse. I've heard Chiropracters that treat Trigeminal N. can help. I'm going to try it as soon as I can. Hang in there. Daryl