Happy New Year Everyone For anyone who s... - My MSAA Community

My MSAA Community

9,588 membersโ€ข21,449 posts

Happy New Year Everyone For anyone who suffers with Trigeminal Neuralgia

jimeka profile image
jimeka
โ€ข59 Replies

Hi everyone, I have been away for so long but I thought I would share the little bit of information that I have with you for people who suffer with TN, I have TN in my right jaw, it has been so bad that i literally could not talk for 6 weeks, the pain was so severe. There has been many time I have stood in front of all my medications and just wanted to take them all at once because of the pain. My neurologist has given up on me and said there is nothing he can do for me on the NHS. I cannot afford to go private having just lost my husband and had to pay off the mortgage with his pension. So my dentist has been a God send, she sent me to the maxofacial specialist who started a series of injections. He injectected me to begin with, with Lidocaine behind where my wisdom tooth used to be, just to see if he could find the right nerve for my tongue and lower gum. He found it right away. It was great, for 3 hours no pain in my tongue, teeth or gum, and I could talk. Well my daughter actually told me to shut up. Two weeks later I went for another injection, this time with Bupivacaine, the idea is to eventually kill off the nerve . Well I have now had 4 injections. I can now talk, eat and drink. I am not loosing weight any more. The injections really hurt but at the end of the day itโ€™s better than the TN pain. But then I got to thinking is the TN just having a break?

So if anyone else has tried this treatment would you please let me know. I do go to the pain clinic on Friday to see what they have to offer but we will see.

Anyway I see there are lots of new faces so I say hi to all the ones I know and welcome to all the new ones and happy birthday to Morllyn and Amore55 and hi carolek572

Written by
jimeka profile image
jimeka
To view profiles and participate in discussions please or .
Read more about...
59 Replies
โ€ข
erash profile image
erash

hi jimeka ๐Ÿค— for me gamma knife has worked for more than 15 yrs now ๐Ÿ™

jimeka profile image
jimekaโ€ข in reply toerash

Is that an invasive procedure erash? Hope you are doing well ๐Ÿ™

erash profile image
erashโ€ข in reply tojimeka

Yes and no. Itโ€™s basically radiation externally targeted at the trigeminal nerve in the brain. No incisions or excisions.

jimeka profile image
jimekaโ€ข in reply toerash

Thank you very much ๐Ÿ™

bxrmom profile image
bxrmom

jimeka I'm so sorry you had to go through that but so glad your dentist was able to help you! Maybe a new Neuro is in order? Hugs. Happy New Year, I hope this year is better for you.

jimeka profile image
jimekaโ€ข in reply tobxrmom

Thank you good to hear from you ๐Ÿ™

falalalala profile image
falalalala

Hi!

I'm glad to see you and glad you're getting some relief.

jimeka profile image
jimekaโ€ข in reply tofalalalala

Thank you howโ€™s the hip?

falalalala profile image
falalalalaโ€ข in reply tojimeka

Not quite to hula dance level but no pain, tha๐Ÿ˜€nks

jimeka profile image
jimekaโ€ข in reply tofalalalala

Thatโ€™s half the battle won then ๐Ÿ‘

falalalala profile image
falalalalaโ€ข in reply tojimeka

๐Ÿ‘๐Ÿ˜€

NorasMom profile image
NorasMom

It is so good to hear from you! I was just thinking about you this morning, so I'm glad you've found some relief. I hope things are going well in general. We miss you here.

jimeka profile image
jimekaโ€ข in reply toNorasMom

Thank you very much good to see you are still active ๐Ÿ™

lbenmaor profile image
lbenmaor

I am so sorry this is happening to you. I'm glad your dentist is helping. We have missed you.

Leslie

jimeka profile image
jimekaโ€ข in reply tolbenmaor

Thank you thatโ€™s very kind I hope you are in as good a health as you can be ๐Ÿ™

carolek572 profile image
carolek572CommunityAmbassador

So nice to hear from you, jimeka ! Wish that I could help with your TN. Youโ€™re in my prayers. The NHS really stinks, but happy that your dentist can help you. Please post more now that youโ€™re back because so many miss you on the forum! ๐Ÿค—

jimeka profile image
jimekaโ€ข in reply tocarolek572

Did you get your birthday card? I havenโ€™t heard from you in awhile. Are you ok? ๐Ÿ‘Œ

carolek572 profile image
carolek572CommunityAmbassadorโ€ข in reply tojimeka

No, I didnโ€™t get a birthday card from you, jimeka . I have been quiet as of late. I did send you a couple of emails. Glad to hear from you ๐Ÿค—

jimeka profile image
jimekaโ€ข in reply tocarolek572

i sent a moonpig card full of photos especially for your big day , I thought you were quiet

carolek572 profile image
carolek572CommunityAmbassadorโ€ข in reply tojimeka

Did you send it to my current address in Arizona, jimeka ? It was probably amazing, I am sure! ๐Ÿค—

jimeka profile image
jimekaโ€ข in reply tocarolek572

Have you moved?

carolek572 profile image
carolek572CommunityAmbassadorโ€ข in reply tojimeka

Yes, I have been in Arizona since November 2021. We sold our MA home of 25 years, bought a house in Tucson. No more bone cold temperatures or snow banks. Instead, we have triple digit temperatures and monsoons. Cannot complain ๐Ÿค—

sapphire65 profile image
sapphire65

Hi jimeka, I know what TN is. It is the most horrible pain! I am prescribed Oxcarbazepine and Baclofen for this symptom of MS. This has worked for me since 2015. I hope you find relief soon!

jimeka profile image
jimekaโ€ข in reply tosapphire65

Unfortunately I am allergic to all the medications that they can prescribe for TN so they are at a loss as to what they can do.

Morllyn profile image
Morllyn

Thanks for the Happy Birthday wishes!๐Ÿ˜Š

I am sorry to hear about your TN! ๐Ÿ™ I hope that the shots keep working. Take care of yourself love ๐Ÿงก

jimeka profile image
jimekaโ€ข in reply toMorllyn

Hope you had a nice birthday and you are keeping well ๐Ÿ™

mrsmike profile image
mrsmike

So glad to hear from you! But I do wish it wasn't under these circumstances. Glad to hear that you are feeling better and pray all the treatments were a fix and not a break. Be well and let us know how you are doing. โค๏ธ

jimeka profile image
jimekaโ€ข in reply tomrsmike

Thank you and itโ€™s nice to see that youโ€™re still around ๐Ÿ™

Mollyabigail profile image
Mollyabigail

Jimeka! How wonderful to hear from you. I think of you often. So sorry for the pain you endured. I hope you get lasting relief! Let us know how you are doing, occasionally! ๐Ÿ˜˜

jimeka profile image
jimekaโ€ข in reply toMollyabigail

We will see what this pain clinic has to say on Friday . How are you doing? ๐Ÿ™

Mollyabigail profile image
Mollyabigailโ€ข in reply tojimeka

Progressing somewhat, but wearing a Cionic neural sleeve now. Oh goodness, it's good to hear from you. I was worried! Check in when you can. You are missed.

jimeka profile image
jimekaโ€ข in reply toMollyabigail

What on earth is one of those?

Mollyabigail profile image
Mollyabigailโ€ข in reply tojimeka

cionic.com/neuralsleeveNot sure why they call it a 'sleeve', since it goes on your leg. ๐Ÿ˜…

CynthiaS profile image
CynthiaS

So glad to hear from you Jimeka!! Glad you are getting some relief and Happy New Year!!!!

jimeka profile image
jimekaโ€ข in reply toCynthiaS

How are things with you? ๐Ÿ™

CynthiaS profile image
CynthiaSโ€ข in reply tojimeka

Caretaker for my mamma born 10 Nov 1938 in Genova Italia she remembers singing in German to the soldiers who invaded Italy . They gave her chocolate flour cheese different things. I say all this to let you know speaks Genovis different Italian spoken onlybin Genova, no one but my son understands. May get some relief Sunday with my son and his family. Trying not to to burn out. Keeping faithful. Blessings Cynthia S

jimeka profile image
jimekaโ€ข in reply toCynthiaS

Must be hard work for you but quite rewarding at times

CynthiaS profile image
CynthiaSโ€ข in reply tojimeka

Yesssssss!! I enjoy having my mum and I am really going to miss her when the time comes.

CatsandCars profile image
CatsandCars

Jimeka, I'm so sorry. That sounds like a nightmare. I pray that you will find continued relief. ๐Ÿ™

jimeka profile image
jimekaโ€ข in reply toCatsandCars

Thank you ๐Ÿ™

Jer29-11 profile image
Jer29-11

Awww, so nice to hear from you, but Iโ€™m sorry for what youโ€™re going through. Praying youโ€™ll get permanent relief from the injections ๐Ÿ™๐Ÿป

jimeka profile image
jimekaโ€ข in reply toJer29-11

Thank you all prayers are appreciated ๐Ÿ™

cindyrn68 profile image
cindyrn68

Jimeka! So happy to see you! I wish you the greatest benefit possible from your injections.

jimeka profile image
jimekaโ€ข in reply tocindyrn68

Thank you ๐Ÿ™

goatgal profile image
goatgal

It's so good to hear your voice on the forum again. We've missed you!

jimeka profile image
jimekaโ€ข in reply togoatgal

Hey get cleaning. No time for chatting ๐Ÿคฃ๐Ÿ˜‚

ms23 profile image
ms23

So wonderful to hear from you! Iโ€™m so glad you are getting some relief. I hope things continue to get better for you all around. You have been missed!

jimeka profile image
jimekaโ€ข in reply toms23

Thank you very much thatโ€™s very kind of you to say ๐Ÿ™

Greentime profile image
Greentime

Unimaginable. ๐Ÿค—

mrsmike9 profile image
mrsmike9

I'm so glad you are back! Your pain sounds horrible! Give your dentist a star for finding someone who could help. And with that guy trying to kill the nerve...I can't imagine how painful the treatment must be! Hopefully it is killed off so you don't need treatment and have no pain.

jimeka profile image
jimekaโ€ข in reply tomrsmike9

My sister has taken me a couple of times and she is now 73, grey haired, attractive, retired doctor, she has researched this TN a lot for me so when I go for an appointment she comes in with me but itโ€™s quite funny because itโ€™s like watching a tennis match with the ball being passed from player to player, my sister and the consultant are talking jargon and I am sat there waiting for the injection. The last time I went my daughter took me and it was so, so painful, he had run out of the proper size needles and all he had left was the Botox ones so he used one of those, never again, I was sat in the chair but I was like a ballerina up on my toes , he stuck the needle in 6 times but he knew he had hurt me because he couldnโ€™t say goodbye. Hopefully the pain clinic will have some answers tomorrow ๐Ÿ™ Howโ€™s the family doing and howโ€™s the granddaughter?

mrsmike9 profile image
mrsmike9โ€ข in reply tojimeka

I tried to send a photo and it must have overloaded the system! Well, I took a screen shot of what I wrote. Skip the reference to the photo!

Text
Kitsey profile image
Kitsey

Itโ€™s so wonderful to hear from you! Iโ€™m grateful that youโ€™re getting relief at last. May it continue so that you are pain free. Happy 2025! May it be a much better year for you ๐Ÿ˜Š๐Ÿ™

jimeka profile image
jimekaโ€ข in reply toKitsey

Thank you and may 2025 be good to us all. ๐Ÿ™

Helpmeup profile image
Helpmeup

Hi jimeka, so nice to see your name pop up! Sorry you are dealing with these very painful issues. Living with pain is physically, mentally and emotionally exhausting. I am glad you are getting some relief from those injections. Hope things keep improving for you. Sending a hug. ๐Ÿค—๐Ÿค—๐Ÿค—

jimeka profile image
jimekaโ€ข in reply toHelpmeup

As you know living with pain is challenging, sending a hug back ๐Ÿค—๐Ÿ’

starlight5 profile image
starlight5

Happy New Year! jimeka Thank you for sharing your experience with TN. You have been missed ๐Ÿค—

jimeka profile image
jimekaโ€ข in reply tostarlight5

Thank you nice to see such familiar faces ๐Ÿ™๐Ÿฆ‹

kycmary profile image
kycmary

Hi Jimeka it has been awhile glad to see you back. Hope you are doing well.

I too lost my husband. He died last april, after spending 1 month in the hospital fighting pneumonia.

Not what you're looking for?

You may also like...

Happy New Year!

It was a little late, but a couple of days ago, it hit me: January 1st was the 5th anniversary...
CrazyCatWom profile image
โ€ข

gabapentin 600 mg for sudden twinges of possible trigeminal neuralgia (tgn) but mouth has gone ok, stupid me. not ALL GONE

I wear an upper denture & felt the first twinge in my upper left jaw, the place where my tng...
ekelks profile image
โ€ข

HAPPY NEW YEAR EVERYONE!!!

It's a brand new year & I am looking forward to brand new things to happen! yes I am I will look...
kycmary profile image
โ€ข

Happy New Year!

No poem this yr my friends, as the whole yr of 2022 just turned the world upside down! (My opinion)...
Jesmcd2 profile image
CommunityAmbassadorโ€ข

Happy New Year to allโค๏ธ

i appreciate you. when i am having good daysโค๏ธ and i appreciate having a place to go when my...
HouseElfWon profile image
โ€ข

Moderation team

See all
johnMSAA profile image
johnMSAAPartner
DanaMSAA profile image
DanaMSAAPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.