All Blog Posts (930)

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

i  hav felt so down sice i had pain in my face last night =[ i dont want this for rest of my life im only 25 =[

I have terrible pain and burning in my lips.  They are dry and I constantly have to keep them hydrated.  I have burned my lips b/c  I cannot feel when something is too hot.  I feel the cup or food with my finger before drinking or eating now.   Anyone have any ideas on how to get some relief?  I have burning pain in my teeth, inside my cheeks and my tongue as well.

after a simple trip to the dentist i firgured out whats been wrong with me for close to 10 yrs i put my theory to 2 docters a neuroligist and a oral surgen my theory was simple but not textbook as im a energetic form of nature,my lower jaw is not offset square making the wisdom tooth on the left set almost an inch behind  where the right is set but the tooth on the left also grew 3 roots in a triangle shape my beliefe was root no. 3 was interfering with the nerve! both doctors told me it was…

I have recently started on Amitriptyline 25 mg (1x/day) and Baclofen 5 mg (3x/day) and it seems to be working fine.  Since I went through a dreadful period before I got on these meds. , I am reluctant to plan a vacation.  I know if I am home I can get to my doctor fairly easily.  I don't want to put my life on hold especially now that I am feeling more normal but I am afraid to go on vacation. I also am concerned that my husband might need a vacation.  What if I had a terrible "break…

         Finally having MVD surgery on Monday, thank goodness. Had consult last week and am going for PAT's on Thursday. Will not be online after Sunday, 2 days in hospital then home to heal.  LOL  Am alittle nervous, but after Chiari surgery, this should be a piece of cake. Wow, my hair is just growing in the back of my head now. Shaving the left side of my head for this surgery, I will have to do a major comb over.  LOL  Wish me luck and send prayers this way on Monday. Thanks for all the…

The pain in my mouth and teeth 24/7 intensified big time since my last blog post . I literally laid in bed at one point and thought I was going to break from reality. I was taking 2100 mg a day of neurontin, up from 300 and that is when the pain kicked in. I dropped it back down to 300 mg a day, and the pain got better big timeeeeeeeeeeeee. Im still numb. BY THE WAY, NEVER SUDDENLY GO OFF NEURONTIN LIKE I DID. I WENT THROUGH THREE DAYS OF HELL WITHDRAWING. I THOUGHT I WAS GOING TO END UP…

Just thought I'd add my experience in case anyone is experiencing similar pain.  I had sharp shooting pain in one lower molar and thought I must need a root canal.  The dentist said there was nothing in the xray to indicate a root canal was needed but I insisted........what else could it be, right? After the root canal, the pain was still there so I started research on the internet and discovered TN. 

 Went to a neurologist who confirmed and put me on Tegretol.  That worked for 9…

I was conscious sedated so I remember t0o much, but no enough to piece it all together. I dunno if I had my jaw dislocated, I sure as hell picked the wrong gorram time to wake up if they did. I know they had issues with one of my teeth, they have had to put stitches in - trust me they are no fun, I already want them out! One of the injections to numb be hurt like hell (as I said so much for that sedation). I have a few moments of recollection for the teeth cleaning, and the extraction of my…

I know it's been a while since I posted anything, our computer situation has been a nightmare to say the least. But that has not been the only reason for my absence. I went into another remission and this one seemed to last for months, actually I suppose it did. Maybe I should start keeping track of this, but I didn't.

Anyhoo, at the time I was on Tegretol 400mg 3x daily, and wanted to see if I could get off of it during a remission, so I began lowering the dose. First down to…

It has been very enlightening to read about everyone's stories and to learn more about this condition.  Thank you for sharing and for the few of you have shared nice comments with me.  I continue to have difficulty believing that this is what I have, but deep down I know it's true. 

I feel like I self-diagnosed myself, as I discovered this disorder when I was searching on the Internet for something to explain the pain I was having.  I had already gone to the local Medical Center…

6 YEARS!!! I am 28 and have had this for 6 years... everyone I love suffers when im down but im sooo down. the last few days have been horrible but today is just to much. The pain hasnt stopped and i now feel it in my ear and down my neck. I have 4 kids that need me but they know "mommy's always sick" it kills me... and my husband has a bad back and has full on injured it again, he is down and trying to be a hard ass and get threw it, i wish i had his strength.

I have reached full…

Today I went for a long walk on the beach. It was so windy. The last time I did this (3 years ago) the wind was barely blowing but I couldn't stand it because of the pain. Today I turned my face to the wind and smiled.  I got a mouth full of sand! LOL It felt so good to be out there in the salt air with sand blowing everywhere. We walked a few miles down the beach and back again. It was definately one of those simple pleasures TN had taken from me but because of the MVD, I got it…

Due to recurring sinus infections and huge tonsils, my ENT wants me to get my adenoids and tonsils removed. I did some research and became really concerned because the tonsils are ruled by the sphenopalatine ganglion (SPG), which is one of the many parts of the trigeminal nerve.



One of the treatments my TN specialist does for TNP teeth pain is a nerve block on the SPG, which led me to believe that it's even more likely since I already have a pain…

I started taking carm. 100mgs a day on 09/07/11.  Returned to N. after having increased meds. and not finding relief.  By then my pain was taking on new forms.  I told him I still experienced most of my pain as scalp burning, crushing, pressure, sometimes like needles or darts drilling on the right side.  Would come in cycles and episodes lasting minutes and or hours for days before I'd feel some type of relief.  Same triggers including any chewing into foods, caffeine, wine, sugary juices,…

OMG...going through this site has been such an eye opener...I have ATN...have had it for 4 years due to a bad dentist injecting the trigeminal nerve area ...he did this three times...injecting 3 times per tooth he extraced.......Drugs controlled it perfectly...and luckily I have  had no side effects whatsoever...and if I have..I havent noticed them...Then lat year in January I got Shingles...Or Herpes Zoster as its officially known...on my face....on both sides...One after the…

I got a virus sometime over the last few days. I've been struggling to stay warm. My head is foggy, my throat is soar and everything aches. It hurts when my husband tries to rub me to help me feel better. I went to my Primary Physician today. They did more blood work on top of what my Neurologist has ordered. Found that my blood pressure has spiked since I started the Trileptal. Now they're concerned something bigger is going on. Through all of this I spoke with my Pharmacist about what I…

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