Just to get us started, here is a small piece I wrote about my TN success story. (I know it's been posted on this site a few times already, so I'm sorry if you've read it before!)
I do plan on adding to this eventually but I do hope it inspires and educates in the meanwhile...
Kate's MVD Story
I just read your blog, Kate, and commented there. WOW! What a trimphant story! I am so so happy for you! Let the FUN begin now. Carpe Diem!!!
Not exactly full success, but I've started using imitrex (a migrain med) for flare ups of nerve pain and it works! Takes about an hour, makes me feel woozy, but the pain goes away. Amazing.
Hi Karen. How are you now with using imitrex? Since May, hope it has helped you a lot.
I just came across your story while researching, trying to be my own advocate. It brought tears to my eyes! Your description of the initial attacks, coming out of nowhere, not triggered by trauma or a tumor, etc. and very soon incapacitating you and interfering with your life, sound exactly like what I am going through. Eating, talking, brushing my teeth, washing my face, or even getting a little emotional, all trigger lightning bolts of pain beginning in my jaw and shooting up to my temple and down to my chin. In the past week, the pain has seeped into the left side of my tongue as well. I had my first attack on May 20th, 2015. It has only been 7 months and I cannot imagine what you went through, suffering with this pain for 5 years! I don't think that is an option for me (not that you chose to suffer for that long), as my pain has gotten progressively worse, with the attacks more frequent, in just the last month. I have only just heard of Trigeminal Neuralgia and at this time, I have no medical insurance. I am using this (hopefully brief!) time while uninsured to find out all that I can, and hoping that I can employ methods that do not involve medication. I am willing to consider surgery only as an absolute last resort. The information you gave on MVD was very helpful and I will keep that in mind and learn more. I have also read about other procedures, and it seems that each case is unique and what works for one TN patient does not necessarily work for another - even if they suffer from the same 'type' On that, I have not even been officially diagnosed, but I would say that I am 90% sure that I have TN Type I.
I guess I am just reaching out to you because I am quickly approaching the stage of despair. I find it challenging to do all of this research when all I want to do is distract myself from this intense pain (or curl up in a ball). It does not help that I cannot see any doctors right now, but I did have a brain MRI which came out 'normal'. I also saw a neurologist, who prescribed muscle relaxers and PT. She never even mentioned TN (possibly because it is so rare, especially in those under 50) and I had not yet heard of it. I have also seen a rheumatologist who ruled out RA and have tried various meds, mostly used for treating migraines. However, I am generally averse to taking pharmaceuticals as I am often quite sensitive to the side effects. Are there any other treatments that you would suggest? Did you ever investigate 'alternative' therapies before you decided on MVD? Thus far in my research, medications seem to be the most common solution, and many cannot bear the side effects and eventually build up a tolerance to them. I am huge believer in natural healing, but the information on natural treatments for TN seems to be scarce.
I know that your surgery was several years ago. My hope is that new developments in treating TN have emerged since then; I just have to dig deeper to find them. How are you today? Do you still consider MVD the best decision you could have made? Have you had any attacks since your recovery? You mentioned that you read a couple of books on the disease. What were they and how helpful did you find them?
I have never met anyone else with this disorder, so finding the 'Living With TN' online support group has been helpful, if only in knowing that I'm not alone, nor are my symptoms psychosomatic. Like you, I am very fortunate to have a loving and supportive partner (of over 12 years), though I can tell that he feels helpless and seeing me suffer causes him pain as well. We are in the middle of a huge transition, planning to move out of the US and do some travelling. This gives me even more of a sense of urgency to find remedies for my pain, as I do not know what the resources for TN sufferers will be like in other countries. Of course, I also want to be pain free so that I can enjoy this next chapter towards which we have worked so hard! I know that you can understand this, based on how you described you happy nd fulfilling life before (and I presume after) TN.
Thank you, Kate, for sharing your wonderful and inspirational success story and for 'listening' to mine of my present struggle. It has been somewhat therapeutic just reading your tale and typing this. I would greatly appreciate any information or insights you can give me. I'm just beginning my quest for relief so I am reaching out to those who I know can empathize with the often overwhelming nature of this disorder.
Peace and Healing Light to you! :)