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Type II Trigeminal Neuralgia

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Type II Trigeminal Neuralgia

For support and exchange of ideas and info for those caring for someone, or suffering from Type 2 Trigeminal Neuralgia, also referred to as Atypical Trigeminal Neuralgia, or ATN.

Location: subject-specific group
Members: 532
Latest Activity: on Wednesday

Discussion Forum

What's happening?!

Started by Camia. Last reply by Richard A. "Red" Lawhern May 18. 1 Reply

I haven't been on the forum for a number of months. Interestingly, in the midst of this flare-up, there were two email discussions, and I was reminded of a place to go to find support. All of a sudden today, the hard palate just behind my right…Continue

Newly diagnosed & don't know what to do

Started by Lyss. Last reply by JR2268 May 7. 19 Replies

I'm recently diagnosed, been almost a week. I was prescribed gabapentin 300mg at night only. It seemed to help right away but wears off 5-7 hours later then my pain returns. My Dr told me to double the dose so now I'm on 600mg at night but it's the…Continue

Medications Used for Type 2 (Atypical) TN or Trigeminal Neuropathy?

Started by Richard A. "Red" Lawhern. Last reply by Jess Apr 13. 213 Replies

This discussion thread invites members of the group to identify the medications they use for Type 2 Trigeminal Neuralgia or Neuropathy.  These types of pain usually present as 24-7 throbbing, aching, burning pain instead of volleys of intense…Continue

Tags: T, atypical

DX 2 months ago and getting to a point of getting real pain Relief

Started by kromeo419. Last reply by itwouldntbemakebelieve Mar 21. 13 Replies

I had symtoms 2 years  now but was very mild and here and there kinda thing.  Now three months level of 9 pain by night time.  Had appointment but Pain management sent me off to Neursurgeon. Saw him Friday gave me a cream (not helping) cannot help…Continue

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Comment by DiDi on May 19, 2016 at 8:03am

Fighting Wife:  Also there's a wonderful book offered on Amazon that has tons of information/resources about TN.. It's called Striking Back : The Trigeminal Neuralgia and Face Pain Handbook 

Tell Your husband there is hope and doctors that can help him out there.  I know it's a struggle to find ones qualified to treat TN.  Also check this site for support groups in your area.

Comment by wm phillips on May 18, 2016 at 1:29pm

Love your tag...as I am a husband with TN2, but nothing near the complications that your husband has. I live in KY but NOLA is my home town. I know how hard it is to travel and have zero trust in a doctor that tells me he/she has experience with TN. ZERO!!

So, I hate to see you make an effort with only a possibility that the physician has the proper experience. Your guy, in my opinion, needs to go straight to the best.

Vanderbilt might be closer, but MAYO is known for a team approach with awesome customer service/bed side manners.

Henry A. Gremillion is the dean of lsu dental school. He "might" have a clinic up and running. I would trust him for a referral, but his school/clinic is not qualified. Just mentioning him as a referral source.

In all likelihood, stick with the known...Mayo.

Bill

Comment by Fighting Wife for Husband on May 18, 2016 at 1:09pm

Thank you DiDi, I will check Mayo Clinic out.

We live in Louisiana, he is being referred to an Arkansas neurosurgeon. We have done seen 7 different specialists, a neurologist, and a neurosurgeon. This is getting to be emotionally draining and my husband is saying he wishes the Lord would just take him so his pain would end. It's very sad we have to travel out of state for him to HOPEFULLY get the treatment he needs. This doctor supposely specializes in constant facial pain. 

He's been diagnosed with several things from internal shingles, ramsey hunt syndrome, mastoiditis, lupus with sogrens syndrome, atypical facial pain (very insulting btw) tmj with anxiety (hahaha) IT's been a nightmare. Oh and occipital neuraglia which was ruled out with occipital nerve block that only intensified his pain even worse. 

Comment by DiDi on May 18, 2016 at 12:34pm

For Fighting Wife:: Please stop wasting time with doctors who are not knowledgable about TN.Please see a good neurologist/neurosurgeon familiar with TN.  They will give your husband the meds and counseling he needs.  I don't know where you live but the Mayo Clinic has qualified doctors. There are clinics in Minn., Arizona and Florida. I personally see neurosurgeon Harry Van Lovern with USF/Tampa General Hospital.  He is an expert on TN and treats many patients.
Best of Luck

Comment by Richard A. "Red" Lawhern on May 18, 2016 at 12:22pm

Fighting Wife for Husband wrote to all members of Type II Trigeminal Neuralgia on Trigeminal Neuralgia (TN) - Online Support Group!

My husband has the constant burning, aching, throbbing on the right side of his face, neck,ear and scalp. He also is very tender and numb on this side. He gets electric shock like pains in his right eye at least 4-5 or more times a day depending on how stressful his day has been.

His eye has really thrown all these doctors for a loop, and none of them think he has ATN or TN, except for a rhuematologist who won't treat him with medications and our primary thinks he does but I don't think he is that knowledgeable of what medications to put my husband on. He prescribed him lyrica 300mg three times a day and its not helping him, hes also on percocets and oxycontins 20mg, that is helping him function so he can work. His primary prescribed him Depakote and told him to take it but the pain management doc told him to hold off on it and up the lyrica again. This is just madness.

My husband did try the tegretol and had an allergic reaction to it.

I'm reading where the elavil combined with an anticonvulsant gives good results for some but when we go to our doctors suggesting these medications we get turned down.

Right now all he is on is lyrica and percocets and oxycontins which is just masking his pain and his pain is getting worse as time goes by. we want it to be slowed down or permentmently gone.

Does anyone else have ATN with possible TN shock like pains to their eye??

Thanks

God Bless

Fighting for My Husband

Comment by Richard A. "Red" Lawhern on May 17, 2016 at 7:24am

annoyedinva wrote to all members of Type II Trigeminal Neuralgia on Trigeminal Neuralgia (TN) - Online Support Group!

HELP! My first trip to the ER after 6 years of ATN was last night due to what felt like a Charlie horse on my face. Docs had no idea what to do and sent me home w Valium and pain meds.

I had a Glycerol injection 3 weeks ago (was super sore for 2 weeks after) and other than numbness from my forehead to middle of cheek, through my eye (for which I was using eye drop gel as my tear ducts were hopefully just temp stopped, and same side upper lip, all seemed well. I had notice some weird twitches accompanied by mini pain spasms. These twitches were not bothersome and the pain mild relatively speaking. I would ask my husband if he could see what I was feeling and he would laugh and tell me no.

Yesterday, I had some twitches that felt more pronounced so I decided to film to show my husband. Within 2-3 mins the twitching, which this time felt like my eyebrow was being pulled down and my same side upper lip was being pulled upward, scrunching my cheek in the middle. It quickly felt like a Charlie horse! This was unlike my typical ATN symptoms with the bulk of my pain near my ear, along my lower jaw and around my lips. Within a few mins, I was on the floor in the fetal position in severe pain. Called my mom who took me to Urgent care. The cramping would last as long as 10 mins with varying degrees of severity and a brief 20-30 secs in which the muscles would relax. From the outside, it presented as a hemispheric cramp but the pain was an 8,9, 10 plus.
IV Valium at Urgent Care allowed my face to relax and I was so exhausted, I fell asleep. Within 2 hours, it returned. I was given morphine which made me less bothered by the cramping but did not stop the cramps. That wore off in about an hour and the cramping returned. ARG! The doc wanted to admit me but I honestly, other than wanting the painful cramping to stop, wanted to go to bed. He sent me home with Valium and Percocet and I slept a good 4 hours. So my obvious question- please! If anyone has any experience or insight, please reply or send me a message (Btw my neurosurgeon is out of town on vacation this week). I am terrified of more attacks!
Thanks! P

My response:  P, your symptoms align quite closely with those described by people with a diagnosis of hemifacial spasm and typical TN. Hemifacial spasm is caused by compressions of the 7th cranial nerve where TN occurs in the 5th cranial nerve.  I would recommend that you consult immediately with the triage nurse in the practice of the doctor who did your glycerol rhizotomy.  

Although there are definite risks in microvascular decompression surgery, it has a record of effectiveness in hemi-facial spasm that is unmatched by anything else.  You may need to be referred to a neurosurgeon who does that procedure frequently, for assessment.

Go in Peace and Power
Red  

Comment by Tree69 on December 19, 2015 at 11:44am
This is about infection of the vagus nerve and trigeminal nerve. Harvard professor explains hypothesis he has formed regardinding Vagus and Trigeminal nerve being crainial immuno nerves. I believe my TN2 is from infection, always have. By working on clearing out infection in ENT my pain levels and symptoms are slowly disappearing. I have had to change my diet and do lots of research on self help to get here.
http://thelowhistaminechefpodcast.libsyn.com/chronic-fatigue-from-v...
Comment by crashgirl on October 22, 2015 at 3:50pm

Actually before I had the MVD, steroids actually made the pain worse , but I found that anti-depressants helped the most with ATN, I used Celexia with very good results and still do because I still get a slight twinge here and there and also I still get boring ear pain, especially on a day like today when my allergies are off the hook!!!  

Wendy

Comment by bocajodes on October 22, 2015 at 2:02pm
I was on Zorvolex for a little but it did not work at all.
Comment by mdpurcey on October 22, 2015 at 1:37pm

DiDi I do. Yes it does help some. I take indomethacine which is from what I've been told a fairly strong medication they use for arthritis. 

 

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