Thanks for all of your responses to my original posting. I am pretty sure I am starting to feel this monster starting on the left as well....How could this be?! Only 1 week following the right side??? I cannot bear this! I sincerely hope I do not have MS b/c then I will lose ALL hope since apparently meds and surgery don't help those with MS. God, why?!!! I CANNOT live like this. I made the mistake of crying out yesterday saying "God please, I don't want to live like this...!" and my little 3 almost 4 year old daughter was in the room and she said, "no mommy you can't go to heaven b/c I need a mommy". It broke my heart. I love my kids more than my life but I don't see how I can bear this.
My family doc won't give me any meds b/c he is "not comfortable doing so" and wants me to be treated by a neurologist b/c he said the meds have such bad side effects. I cannot get in to see a neuro until Sept 24th and I can't sleep. I need help NOW. What do I do? I think I have lost all coping ability right now and I am a true mess. Please help me :(
If any bilateral TN people can offer me stories of success, please do...please.
You MUST demand some interim medication help from your Dr. He should be able to prescribe something to help. He has a duty of care to help you and really must. I feel so bad for you, your pain shines through. There is hope for bilateral. My neuro has treated mine and has my pain at a bearable level. Don't give up hope. When you have a working medical regime you will feel so much better and more in control of your life. Keep in touch, {{hugs}}.
I also have bi-lateral TN, with a-typical pain on both sides. I have it more in my right side than left, I am scheduled for an MVD in october for the right side. In my discussion with the neurosurgeon, my left side may ease up after the surgery, I am seeming to notice it more because I have had constant pain on my right side for months now. I have a major compression on the right side, the left has a slight compression. I was told to wait and see how the right side goes, and the left may be just an annoyance down the line and may not need surgery.
As for waiting for the doctor, i called my local neurology group days after I was diagnosed, and was given an appointment 5 months later. Since my local hospital was willing to let me be in pain for months, I searched the internet and found this site. From there I found Johns Hopkins and set up a consult, I had a three week wait to see them. My point is, dont give up, keep researching until you find a doctor that will take you sooner and prescribe something to help, if not, go to the ER if it gets unbearable. There is an awesome checklist on the face pain info tab that you can fill out and take with you.
Please know we have all been where you are , but there is hope!! Dont give up!! And dont take no for an answer from any doctor, its your life, not thiers. Feel free to message me as well
If it is in fact MS, which I pray it isn't, there are treatments. One of the medications used for MS, Baclofen helps to treat TN as well.
I am facing the same issue, of my PCP being uncomfortable treating my ATN. I understand your asking for help and feeling shut out. If sleep is an issue for you, consider trying Melatonin, it also works to help relieve pain.
For three years I got by on Tylenol, for the occassional headache. I had long periods of remission in the past as well, there is hope.
If your pain is intolerable go to the ER and explain you have an appointment with a Neurologist scheduled but cannot tolerate the pain. In most cases they will provide rescue treatment.
Hi Liz, I too feel very much the same as you. It's maddening! I need to be strong for my kids, but I need some relief and it's nowhere to be found. Meds work for awhile and seem to just stop working altogether one day out of the blue. It's very scary to think of surgery, but everytime I have another attack I think about having it. I have spoken to many people that have had the surgery, and they all say to do it. I have an appt with my neurologist tomorrow and I am going to put my foot down about treatment. No more screwing around! I will let you know how it goes, ok? I do understand your terror, frustration and hopelessness but I want you to know that we can walk this walk together and commiserate, ok? there has to be more that can be done and I am ready to do it!
