I am so very sorry you have had so much pain. I was in my 50s when my started. I had MVD LESS Than a year after my first jab. My surgeon is so good. It has come back some but since I had to retire it has gotten so much better. I was an educator and talking is my biggest trigger. Please feel free to call me and I will give you his information or send me an email if you like. I will say I know the Lord is truly the only thing that keeps going. I will pray for you daily. HE IS THE GREAT PHYSICIAN. Claim Ps. 16:8.
Ha wheels4legs thanks for making me laugh, the best medicine of all.
Thanks Lorraine. I’m curious how much did the MVD surgery cost you? My pain doctor said if these trigeminal nerve blocks don’t work it’s time for surgery.
Thanks Brainburn. Is the medical marijuana helping? I’m so curious about it. It will probably be another two months before I get my card. Y’know it’s funny I’m not sure if it’s because my trigeminal neuralgia comes from MS or it is just bc the way it affects me but touch, wind and brushing my teeth don’t bother it. Showers do and touch can, but it’s not always. Touch may be a certain spot for me and I just haven’t figured out where. Talking is 100% a trigger.
And I think I am the strangest TN patient ever in that chewing actually feels better. I noticed that early on. I was eating something (oh and when I say chewing I mean more like gumming at something lol bc I don’t eat anything hard) and I was in less pain. I’m almost always in less pain when I’m chewing. No idea why. I’m very curious about it.
I love what you said about bring the mother of three girls. hope today finds you well.
Hi Cheryl. Talking! Me too!
How long did the MVD surgery work for?
It worked perfectly for about 4 yrs and is now 80% since I retired on most days. I am fixing to have to have some dental surgery done and that scares me, but GOD will provide. My surgeons name is Dr Dong Kim in Houston Texas. He has done several peoples surgery I have met on this site and they have been thrilled. I will be glad to call for you. He is the chairman of Mischner Institute at Memorial Herman. I can’t imagine having this at your age. My phone is 979-■■■■ If you want to talk. Pray ing for you daily.
Your pain sounds similar to mine, in that a distraction to the nerve such as eating will lessen pain. It’s a wonder I don’t weigh 300 pounds. I have good relief through chewing gum, and also wearing a mouth guard, odd as that may seem. Chewing gum gets old after a while though. I have two mouthguards that work well–a soft acrylic one that I wear at night, and a thin acrylic one that I can wear during the day (made by dentist of “bleach tray” material). I’ve cut both of them down so they are not as irritating.
It’s not really that uncommon to have pain that responds well to additional nerve input. A lot of ATN sufferers seem to have that kind of pain.
Hi Ya< good to hear from you. How ya doing? LIge is tough and if your going to make it ya gota be rough. Here’s a little thing I learned:
Noah’s Ark : Everything I need to know, I learned from Noah’s Ark.
ONE: Don’t miss the boat.
TWO: Remember that we are all in the same boat!
THREE: Plan ahead. It wasn’t raining when Noah built the Ark …
FOUR: Stay fit. When you’re 60 years old, someone may ask you to do something really big.
FIVE: Don’t listen to critics; just get on with the job that needs to be done.
SIX: Build your future on high ground.
SEVEN: For safety’s sake, travel in pairs.
EIGHT: Speed isn’t always an advantage. The snails were on board with the cheetahs.
NINE: When you’re stressed, float awhile.
TEN: Remember, the Ark was built by amateurs; the Titanic by professionals.
ELEVEN: No matter the storm, when you are with God, there’s always a rainbow waiting.
Just a little to live by.
Love ya, hang tough Wheel 4 legs said it
Haven’t decided which side of the fence I am. but regardless of beliefs, this sounds like great life advice
I was fortunate to have the entire cost coveted by our medical aid … we just had to pick up about R6500 for the surgeon’s fee … as I recall final bill in region of R120000 including ten days in hospital
Another thing is that the neurosurgeon was only willing to operate to try and sort out the nerve compression … he said that the pain would not be resolved just reduced … exactly what happened and it’s worth it to have some relief from the 24/7 agony
Hi Again, how ya feeling? Better I hope. SO you think that old Noah had it going on? LOL anyway it’s a cute thing to think on when your feel down. I had a lot of days like that after the accident so I know some of what to do to try to make it. I was always extremely active before it, I was a Scuba instructor, I am a Black Belt 3dr degree in Karate, I used to run 2 miles in 12 minutes, I used to sky dive, and lo=ved to ride my motorcycle as fast as I could go, I think the slowest I ever went was when I first got my license, the director told me to go as slow as I could and stop in front of him so I did—he said then “ah, you can put your feet down if you want” lol. (sigh) lol oh well at least now I can ride my chair. I have a hopped up chair that can make 20 MPH , not as good as my bike used to but life changes. So enough about me. Stay in touch if you like . My eMail addy is ■■■■ have a good one
Wheels4legs said it
wheels4legs, you have made me laugh. I love the Noah’s Ark maxims.
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Christina from Moderator Support
Hi there, (im copying an old post)
If you have MS with TN I like to bring your attention to a study where they tested the medication “cytotec” or misoprostol for TN in people who have MS: http://www.ncbi.nlm.nih.gov/pubmed/127367325
The medication is mostly used to induce abortion but in this small study they tried it for people who had treatment resistant TN due to their MS with pretty good results.
I have tried it but i wasnt able to tolerate it due to some pretty bad gastro symptoms the first time.The second time i ramped up slowly and found my sweet spot (break the medication down to smaller doses) It is generally it is a benign medication with very insignificant side effects (unless you are pregnant :S).
Chances are not that big that this could help, but i say its worth a try! its sometimes just prescribed to prevent ulcers for people who take advil. Tell your doctor you just want to give it a try. If it works you would be getting a significant relief within a week, and so you can stop it if you dont notice an improvement in one week, no harm done.
The paper mentions 600 micro grams per day, which you have to take in 3 doses of 200 mg a day.
I hope you get some relief! take care
(i have the full journal if you need it)
Sorry it’s been a while. Been a rough go. Had two trigeminal nerve blocks one a week after the other. Have had lots of other blocks just fine, no sedation just a pinch of the needle but this nerve “he” I call him is so inflamed they sedate me and it’s so much worse after. But hoping I will soon see the benefit. Typing this with a wet rag in my mouth because can’t stand to have my teeth touching. Found out I have a cracked tooth as well and they need to remove it but the dentist won’t do it, have to see an oral surgeon because of the TN. They are afraid it will get worse going into the bone. Trying to stay positive. I love your attitude today I can laugh at myself typing with a wet rag in my mouth, I must look pretty funny but realizing now I need better tasting rags.
Oh wow I was just typing bc I have a wet rag in my mouth and was looking online at mouth guards but scared to get one right now bc I have a temporary cap but nice to know it works for you. I think it would really help me too. Thanks for the tip.
Hi You, I am laughing just thinking of you with that rag in your mouth. I haven’t tried tasting my rags yet, I’ll have to give it a go.If it works don’t fix it, right? So what did they give you as a block? Sounds gruesome!. I went that MVD rout, I don’t recommend it. WOW, it was a real bummer. I have some very real side affects from it. Oh well to late to change it now. Here’s a cute little thing to think of for the people that come to my door asking for a donation. (I get a lot of them, must be my friendly face) This guy knocked on my door and asked for a small donation towards the local Swimming pool, so I gave him a glass of water.
HUM, he didn’t seem to happy about it. Oh well. I am so glad that you at least a small relief form our night and day mare.
Hay if you would want to you can “E” me direct. My address is: ■■■■. Have to go for now but I am so glad to hear from you. Hang in there.
Wheels 4 legs said it.
You guys are too funny! TG we still have a sense of humor, life would be so much drearier with out it.
Yes, I’ve been trying to write a pain humor piece and it’s coming alone so slowly. I sent a sample to my mom and sister and they said oh that made me feel so bad for you. I said you were supposed to laugh and my sister replied well I smiled a couple times. Back to the drawing board or perhaps it’s only for people in chronic pain to get. Maybe you are my only audience. But don’t worry I will spare you. I’m still writing it.