Sorry folks. Grasping at straws. Anyone with type II have any success stories? I'm just so stressed and depressed over this.
Thanks
I just replied to your other post...
Yes there are success stories. I am pain free right now. I first had TN when I was 29. I then had a remission of eight years. For the past year and a half I have had ATN constantly. What started with one tooth is now bilateral.
I have had my ups and downs but my medication is working very well for me right now, which I am thankful for every day. I am out of pain and living my life.
There are many compassionate and knowledgeable people on this site. You are not alone. Being in pain every day is debilitating. And everything takes time with this...waiting to see specialists, getting an MRI, choosing medication, dealing with side effects and waiting to see if it will work.
You are taking the right steps. Read and learn as much as you can. You need to be your own specialist and best advocate. And ask anything!
Have you watched the video
Dr. Ken casey
Talking about mostly ATN
Google
Tides of neuropathic pain
Its long… But its a gold mine
You can break it down and watch it in several sittings… Total 2 hours
He saved my life with this video info
I have bilateral ATN. Had MVD on my right in January 2013 which resolved the stabbing shocks, but not the constant burning boring. In August 2013 I had a peripheral nerve stimulator implanted on that side, and it completely controls the pain. I had MVD on the left side in October 2013, and that has been a complete success. I no longer take any medication. The surgeon I see is out of state, but he is well woth trip. Finding a doctor who is an expert in TN, and who truly wants to stop the pain is half the battle. Although this can be a long struggle, do your best to hang in there until you find some answers.
Best regards
Christine
Thank you so much. It lifts my spirits to hear there is hope. I can't thank you enough for responding.
justjane37 said:
I just replied to your other post...
Yes there are success stories. I am pain free right now. I first had TN when I was 29. I then had a remission of eight years. For the past year and a half I have had ATN constantly. What started with one tooth is now bilateral.
I have had my ups and downs but my medication is working very well for me right now, which I am thankful for every day. I am out of pain and living my life.
There are many compassionate and knowledgeable people on this site. You are not alone. Being in pain every day is debilitating. And everything takes time with this...waiting to see specialists, getting an MRI, choosing medication, dealing with side effects and waiting to see if it will work.
You are taking the right steps. Read and learn as much as you can. You need to be your own specialist and best advocate. And ask anything!
I haven't watched it yet. Thank you, I will go find it.
Kc Dancer Kc said:
Have you watched the video
Dr. Ken casey
Talking about mostly ATN
Tides of neuropathic pain
Its long.... But its a gold mine
You can break it down and watch it in several sittings..... Total 2 hours
He saved my life with this video info
Hang in there. I’m post op MVD 8 weeks for ATN & TN. I feel great. Off meds for 8 weeks. Pain is 100 percent reduced. They found 8 compressions when they could only see one on MRI. There is hope
Peripherial Nerve Stimulator Implant for ATN 24/7. Horrible, debilitating pain, nothing worked, had bad reactions to meds. Don’t give up!
Did the PNS work for you?
TL said:
Peripherial Nerve Stimulator Implant for ATN 24/7. Horrible, debilitating pain, nothing worked, had bad reactions to meds. Don't give up!
I am doing much better.
I take a large dose of Gabapentin at night, and take a few more if I have break though pain during the day.
Yes, sometimes the pain comes out of no where, and yes, it will make me wince, and close my eyes, but
only for a minute or so.
I don't think I will ever get over the fact that the deep brain pain (feel like it) I have is not really what it feels like.
(bubble of air in my head). I still find it kind of disturbing, but I have had the mri and it shows nothing, so its just
a lie the nerves tell me. I think thats the hardest part for me. The fear that there is something they are missing.
Having fairly good success with Topirimate (generic form of Topamax), and for breakout pain taking Diclofenac. Hang in there, you are stronger than you think! Find a good doctor that will listen to you and don't give up trying, it took me over 3 years and that was just to get diagnosed. I find that when the pain is really bad a heating pad really helps on my neck and back of head and laying down. Try anything and everything if you have to and see what works. I also take Buspar for the anxiety and fluoxetine for the depression, though all these meds took a month or two to get used to taking. I at first felt like I had a ping-pong ball stuck in my throat, but it finally went away. Anyways, it was still a lot better than the pain! By far!
I wish you much luck...also try to simply totally relax if you can, it helps. Deep breathing exercises or meditation daily help a lot.
I have type 2 All I can say is my life with never be the same...I am grateful for everyday I don't have pain because of my medication I am on nortriptyline 75 mg a day I still know I have this condition but I try to keep busy.
Hi Skytapestry, sorry I missed your question for a couple of days. My worst pain, where the Stim is implanted, is about 90% better, often I am not aware of it at all. I have more minor ATN in other places, where I did not have Stim implanted, but it is not at the #9-10 level of continuous pain that the other was. It is like having your life back. Take care.
Skytapestry said:
Did the PNS work for you?
TL said:Peripherial Nerve Stimulator Implant for ATN 24/7. Horrible, debilitating pain, nothing worked, had bad reactions to meds. Don’t give up!
Either my medication kicked in after three or four months, or the acupuncture sessions really helped.
Mine is kind of a weird story with the acupuncturist. She believes that many many illnesses and conditions are caused by allergies. I probably would never have gone to her if I had known this.
However she started interviewing me about possible allergens and when she hit on mold, it was an eureka moment. About a year before my TN started I began working part time in a mold infested environment (it also had a ghost there too, documented).
Soooooo as I said, either the drugs finally started working or the acupuncture really worked. I have not given up the drugs--because i really do not want to risk it.