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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: 461
Latest Activity: yesterday

Discussion Forum

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

Started by Richard A. "Red" Lawhern. Last reply by Min Oct 15. 161 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

But You Look Fine

Started by Stef. Last reply by Granny Oct 15. 150 Replies

Does anyone else get tired of hearing this, of not being believed? Of being expected to carry on with the duties and obligations of life just as if everything were normal, when there is a three alarm fire going on in your face?I wonder sometimes how…Continue

What are your Type II symptoms?...(please share!)

Started by BriBri1016. Last reply by mrl Oct 12. 26 Replies

The fact that my symptoms aren't very "typical" makes me feel like I'm crazy sometimes. I find it very hard to find an accurate description of the pain and sensations that I have....but I need to figure it out PRONTO...as i go to see the neurologist…Continue

Tags: story, symptoms, atypical, 2, type

The relationship of TN and Headaches; how many others have headaches with your TN

Started by Tree69. Last reply by glosmenagerie Oct 12. 25 Replies

I can share with you all what I have been studying up on to be able to help my self find the correct treatment for my illness's. I am not a doctor but am my best advocate.I have been working on the complexities of my illness systematically with…Continue

Tags: Autonomic, Trigeminal, Cephalagias, TAC, system

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Comment by Granny yesterday

     jhunter, have the blocks helped? Do they last? And please do ask your surgeon who is doing gamma knife for ATN to tell you what may happen. To me after doing all the research and reading and reading plus seeing a top neurosurgeon recommended on this web site, it was a no to procedures like gamma knife for ATN as the risk is too great that you will get worse. Sharon

Comment by Granny yesterday

     kwebster, you commented you have a PNS from St. Judes implanted but you do not clearly state how well it is working on your pain. This has been something I am very interested in to manage ATN and atypcial GN. Please post more info. Sharon


Moderator
Comment by Min on October 14, 2014 at 8:29pm

Yep, Jhunter, you've got some real good analogy for TN here. I've not heard anything similar. Sums things up rather well, I think. And I do wish people could see it,too.

Would make our lives a lot simpler.Then they wouldn't ask any questions and know we are in a great Deal of pain. . .

I try to take One day at a time..as thinking about the future would tend to Overwhelm me, and give me great anxiety to boot..... :(

I have trouble enough just getting thru one day. Making sure I keep my meds up and keeping the pain controlled. ....Working with my Doctor every three months, and end up talking with him, usually in between appointments too!!!!!

I hope you can find something that works for you too. xoxoxo, Min

Comment by jhunter on October 13, 2014 at 10:33pm

I'm not sure about medication but I received a sphenopaledine block inject on one side.  I think this was for diagnostic purposes.  On the side they injected I didn't feel pain for about an hour.  I'm waiting a week for the other side.  After that, probably surgery.  I really can't stand it any longer.  The thought of 40 some more years of it isn't going to happen.  As far as "But you Look Fine comment", I get that all the time too.  I do look perfectly fine on the outside.  If I had a pole impaled in my head you would rush me to the emergency room right.  Well, I have the feeling that my head is being crushed, a wall socket is right on my skull, and my head is sitting on a frying pan.  If these things were all happening at the same time people would rush you to the hospital.  Sometimes I wish there were very visible signs.


Moderator
Comment by Min on October 13, 2014 at 1:28am

Yeowww...I just hate the sound of needles...even the accupuncture. :(

Comment by jhunter on October 11, 2014 at 10:19pm

I would have thought the exact thing with atypical.  I think because Botox responded so well for me they went further.  I had absolutely no expectations with my first sphenopaladine block.  I was there and told them the left side and when I woke up my left had zero pain for about an hour.  Being an engineer the laws of engineering state that if you can reproduce it once you can reproduce it over and over.  That being said, I understand they inject Lidocaine or some numbing agent.  If they are just temporarily "damaging" an already damaged circuit (in my case my TN happened as a result of a botched sinus surgery) then they can perm damage it.  Not so sure about direct photons hitting my nerve branches though.

Comment by kwebster on October 11, 2014 at 8:47pm
I went to top top surgeon who stated that MVD gamma etc will not work for atypical tn I also had a block done which as they thought would make atypical pain worse and it did I have a PNS St Jude implanted for mine
Comment by So0o0Confused on October 11, 2014 at 7:19pm

jhunter  just ask your neuralgist for a referral to a specialist. He will know exactly WHO to refer you too to ask questions about a procedure before you have it.

Comment by jhunter on October 11, 2014 at 7:11pm

I have a question about the sequences of events leading up to a "surgery".  So I've gone the route of Gabapentin, Tegratol, and a whole host of anti-depressants.  After that I had Botox until I switched insurance.  Now here is where my question really starts, I've had one sphenopaladine block injection but the post op nurse said I'll have to have another and possibly another after that before Gamma Knife or what have you.  When would I be speaking to a specialist?  Is that my Neurologist or what.  They have made the process really confusing.

Comment by Not Again on September 9, 2014 at 9:12am

Sunny J - I haven't had those symptoms from my TN, however, I have had those vision problems from some of the meds I have been on. Sorry  I don't remember exactly which one...probably gabapentin, lamotrigine or keppra..since I am no longer on those. Perhaps it is from one of your meds?

Wishing you better days ahead. Stay strong, you are not alone! 

 
 
 

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