← Return to Trigeminal Neuralgia*

Discussion
lamerex4 (@lamerex4)

Trigeminal Neuralgia*

Brain & Nervous System | Last Active: 3 days ago | Replies (282)

Comment receiving replies
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can’t take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can’t see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn’t work), morphine, fentanyl, oxycodone, methadone, and other I can’t remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn’t calmed down. I sleep a lot. There are days when I have only minimal pain – 5 to 6 on the pain scale – but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I’m somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be “mad”. That’s the word he used … “mad” … because that’s the term used in relation to nerves that are fiddled with. So I’m wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jump to this post


Replies to "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..."

Hello @mooneagle, welcome to Mayo Connect. I am sorry to hear you are suffering from so much pain. There is another discussion in the Brain & Nervous System Group – Trigeminal Neuralgia*. You can view it here – http://mayocl.in/2j8bIb4.

The newer posts are at the bottom of the discussion but if you have specific questions you may want to click the small search icon at the top of the window – looks like a magnifying glass.

Hoping you are able to find some answers that help.

John

Hi John … Thanks so very much for answering my post about this monster called trigeminal neuralgia. I will check out the website you included. Any information on this pain is helpful. About the small search icon – I can’t find it, but I will keep looking. My eyesight is failing a bit, especially in my right eye which has become affected by the neuralgia pain. I used to have 20/20 vision, so it upsets me that now I even have trouble reading books, and I read constantly. A page size magnifying glass has helped greatly.

We all have our pains and problems – right – and all through my life I used to say to myself that there are so many people in the world worse off than I am and having more pain and trouble than I am. Thinking that used to help me a lot by giving me strength to push through whatever pain or problem came my way. But recently I am finding it very difficult to let other people’s pains and problems keep me from minimizing and trying to ignore my own pain. I just can’t do it any more, but I have accepted the fact that this is the way my life is now and maybe one day the nerve will get tired of firing and stop hurting me. I also have an auto-immune disease called scleroderma with a host of its overlapping syndromes.

But the very worst thing happening to me right now is that some squirrels have been biting the cable wire that goes to my TV !!! and now the TV in my room no longer works. You’d think they would be nicer to me because we feed them peanuts every day. Oh how rough life can be especially when I miss my favorite programs !!! However, I am an avid and eclectic reader, so with no TV for a while maybe I’ll finally be able to finish War & Peace ! I’m over half-way through with it now and I can’t wait to find out what happens at the end !

I have a thought .. which I plan to write to Colleen about .. I think the newest posts and replies should be at the top, not the bottom. It takes a long time to go through them all, especially those from last year. I want/need the most recent posts and replies to be at the top because, as I said, my eyesight is beginning to fail especially in my right eye. And I think it makes more sense to have the most current post and replies at the top of the blog page. I’m having eye surgery in February for whatever the MD said I have, so I hope it fixes my eye problems. I used to have 20/20 vision – I used to weigh 130 lbs, and I used to be much younger !! I’m 69.

My real name is Judy, not Mooneagle. That’s just my user name and I don’t mind that Mooneagle comes up as my name on the posts and replies. A Lakota Sioux elder gave me that name. A long time ago after attending a 3-day Native American gathering, he came up to me and looked deeply into my eyes (they were working okay at that time) and he said that, after watching me those few days, he said that I have an eagle spirit and that I was always looking up at the moon, when the clouds don’t cover it over! I still do. That was the most spiritual moment I ever had in my life. Oh, I do babble on sometimes. I hope you don’t mind that this reply got so long.

Again, thanks John for your reply and for the website.

Sincerely, Judy

Hi Judy,

I hope you are able to find information that will help you in the other group discussion link in my previous post. It has the same title as the discussion title you started only an asterisk was placed at the end of the title – Trigeminal Neuralgia*. Once you click on the link http://mayocl.in/2j8bIb4 go to the bottom of the page and you will see the small page numbers of all the pages of the discussions. If you click the box labeled Last, you will get to the newest posts. Then you just need to keep going backwards. Hopefully you can find some answers there that provide some help. I will forward your suggestion to Colleen (@colleenyoung).

Don’t worry about writing to much! The more you write may help others understand your situation and will prompt someone with similar diagnosis to respond to you. Good luck and keep searching until you find something that helps,

John

Hello Judy,

Searching a discussion group may help you find related information. To learn more about how to use Connect and see pictures of how things work,
check out this webpage https://connect.mayoclinic.org/get-started-on-connect/

I tried to attach a picture of the search icon but it didn’t work. I can send it to you in an email if the link above does not help.

John

Judy, if you click on the attachment on this message you will see a picture of what the search icon looks like. It’s located at the very top on the right side to the left of REQUEST APPOINTMENT of the Mayo Connect window.

John

Hi Judy,
I very much appreciate the feedback with respect to having newer posts come first. In other words present the message in reverse chronological order. This is particularly useful for long discussions where all the participants are following the discussion closely. However, for shorter discussions and for the newcomer into the discussion, reading in chronological order may make more sense. That’s why we have a plan to offer a solution for both. In the next set of improvements there will be an option that you can set to read from oldest to newest or you can select newest to oldest, giving you the choice of how you see the discussion. That’s the good news.

It’ll be a number of weeks before we get to this improvement however because at the moment we are concentrating on improving member profiles and the daily digests. People are getting too many emails. We want to trim the number of emails and make sure they are relevant to you. So I have an interim solution to offer.

To read the latest posts, click “Last” which appears just below the first message. Here you can move between all the pages First, Previous, 1, 2 … Next and Last. I hope this helps for the moment.

Have you noticed that when you click on VIEW & REPLY in the email notification that it takes you right to the message? That’s a good thing, right?

Yikes! I just started getting these pains and have an appointment scheduled with a neurologist. I read this is progressive and see from your post that this is true. I can’t say that there is anything encouraging about your experience but I guess it’s good to know what I’m up against. I hope you find something that works for you. Do you have any suggestions on how to eat or talk without waking the beast? Also, I have two weeks until my appointment. Is there any over the counter relief? I am having difficulty with eating and talking mostly. Although I do have the occasional series of daggers for no apparent reason. Any help would be appreciated. Thanks.

@katydid P.S. Never forget to live as much of your life as you can and don’t give into this monster. Eat carefully and eat soft foods. Liquids are just about what I live on. MMMM Chocolate malts!!! Also, my husband is just about the only man who can tell his wife to shut up … so the pain won’t start. Really!!! Take care.

My mom suffers from this condition and was caused by a dentist. She has had cyber knife and another procedure. We have an appt. the 8th of March with a new neurologist to see if there is anything else available or in general get a fresh perspective. Med's have not been helping my mom either and her pain dr. wants to back her off the medications she is currently on and that has just snowballed into a disaster.

@stfnwtl89 you mention that the pain meds are not working and that the doctor has suggested "backing off the medications". Is she tapering off a number of medications? Is it the withdrawal that is snowballing into a disaster?

Yes that has been a major issue since Christmas, so now in addition to the constant pain as mentioned by several here in this forum. I've heard daggers, burning to the point feels like on fire as described by my family member. This has been 15+ years and started with a dentist. 2+ years ago a new pain mgt clinic was introduced by pcp. It started out as hopeful and for 1+ different combo's have been tried but nothing seems to be the right mix. So 6months ago the pain dr. decided to initiate a weaning and stated he as at a loss and has offered alternative medicine and a referal to a therapist. The weaning has been dreadful and the pain has intensified. I have an appt. with a new neurologist scheduled in less thank a week, this will be new hospital and new group of doctors. I did ask the pain mgt dr. if his goal was to manage pain or was it a personal mission to remove opiods and benzo's all together. Through the years there have been several procedures including gamma and cyber, now the weaning process at 68yrs old. I just wonder what is being gained.