Newly Diagnosed Questions

It doesn’t sound too much like typical TN1 to me.   What made your GP think it was TN? Have you seen a neurologist and/or neurosurgeon - that’s the only way forward. What you really need is an unequivocal clinical diagnosis supported by clear MRI pictures. That’s the basis you’ll need for your clinical bods to discuss drug or treatment options and they’ll give you a very good idea of success rates and predicted outcomes. There is a huge international clinical evidence base for all these conditions which they will have access to. 

Get your practitioner to refer you to a neuro team. 

Good luck

Keep safe

Big D 

I am not sure either--he "triggered" an attack? I would punch my neuro in the face if he did that.  I have enough of my own, thank you very much. 

?I don't know either...I would have thought he'd wait and see what the MRI showed before poking you in the face.

?I have TN 1 and 2 on the right side and while I have triggers (yeah getting touched in the face is one...); so is wind, etc; but its very hard to say without MRI results.  

Hi I am also new to TN, only about 2 months. My symptoms are different where my pain is on the left side and I have described it as being stabbed or electric shocks being sent into my mouth and gums. I feel exactly like you at this early stage where I hope they will find that it's really dental or something else but as yet there's no other solution being offered. What makes me suspect it could be TN is that no pain relief works, I've tried gum gel and strong painkillers but nothing works except the medication given to me by an orofacial consultant. I feel awful about having this condition, I cry every day and have been off work with side effects and being anxious about the pain returning. I never took tablets and am now on my 3rd type of medication but when I'm having this pain I would take anything. I have begun to feel slightly better because of the care of the consultant and his team. My family are great but also worried, but to have medical people who know what to do for you and take control for a little while is exactly what helped me. It's is a very isolating feeling when even the gp doesn't have knowledge or time to give you so I visit these forums for information and advice. I've found that some forums leave me feeling very upset at what people are going through and what the future holds, but as I've been advised, take it one day at a time. Please be assured that it must be normal to feel like we do at the beginning and hopefully we will feel like we know what to expect, how to manage it and be able to live as normal a life as before. Good luck.

Hello BK,

I would suggest to go to a Neurologist who has a vast knowledge of this, and get a MRI done. In the mean time, a good book to read is "Striking Back", by well renown Doctors in this field, George Weigel and Kenneth Casey, M.D.

It has a lot of questions and answers about this disease.

I hope this helps.

Greg

A couple of questions- Who diagnosed you?  A general practitioner or a neurologist?

Did they listen for a long time and ask for detailed descriptions of your symptoms?

Also know that some people may not know the category of TM they have.  Understand that the nerve has 3 branches and depending on if and where there is a clear point of compression they symptoms will be different. https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

if you look at the picture you can see the 3 different areas that each branch of the nerve affects on the face.

You should have a bilateral high resolution MRI with and without contrast before a conclusive diagnosis.  This allows a skilled clinician to compare both sides and possibly see a clear point of compression.  After that appropriate treatment recommendations are made.  

You can only compare treatment outcomes to those who have similar symptoms, similar MRI results and clinicians with a similar level of experience and skill.   In some cases the surgeries are not helpful because of a poor diagnosis.  

That being said, this site is extremely helpful for support- it is hard for anyone to understand the level of pain and suffering and the frustration of not getting a proper diagnosis in a timely fashion because of the wide variery of symptoms- some typical and some atypical.   

Many people who continue to suffer and have had bad outcomes stay connected here for that suuport!  I check in once in a while, as do others who have had positive outcomes- to let people know that for some, surgery is a good alternative.   

I've been in denial for a long time. I agree the pain is as you described. The Dr. had originally put me on Carbamazapine. I was on it for years. I went off of it a few years ago.

The pain came back & I couldn't get relief from anything. I tried every pain med known to man. I started using sedative tooth paste. It helps instantly. Unfortunately it doesn't last long. 

I read an article on natural pain relief. It said to take turmeric. So I tried it.  I also take glucosimine (I buy it at the $ tree.)

This keeps the pain away for 12-14 hours.

Hope this helps!

Hello

I have had TN since May 2016 I have had the decompression surgery MVD and regretfully did not work for me. The Pain is in my left Jaw a strong stabbing pain that hates the cold even the slightness draft triggers it. 

TN is not well know but since i have it and look at this forum it is sad to see how many people are suffering with so much pain and it seems hopeless and never ending. But the medications can work for as long as you don't get bad side effects. I was on Garbapentin for 1 year it was great but I could not drive and had a foggy brain all morning then after lunch and several coffee it let me have the afternoon to get my work done luckily from home.

Since the surgery it has taken 4 months for me to start feeling more my normal self as the latest meds I am on now seem to work great but i have not gotten rid of the sensitivity to cold. So I live indoors until absolutely necessary to leave the house then I am covered all my face all you see is my eyes lol but I don't care I have to get food and get out of the house before I go crazy.

So my dear if you are getting pain relief from the medication for TN then you have TN It can go away but lately I don't see that people have been able to get back to normal. I have a Councillor and it helps a lot to talk about it.

Neuro Surgeons really only want to operate even through the success rate is so low and it is a hard surgery to get through but I am 63 so maybe younger people don't feel it as hard to recuperate. Slowly friends are beginning to understand. There is nothing worse than an invisible disability no one can comprehend your pain but fellow TN suffers.

So as a seasoned suffer take the meds try to have a life and pray and hope it works for you.

I wish you all the best

I feel the same way you do. Let me know if you find anything else out. 

Sounds like TN. I found this on youtube yesterday. Dr. Berg on relief on TN.

I had relief in 40 seconds

He said if it's your right side that hurts go to the left side and with your fingers tap on the left side exactly were it 

hurts but do this on the left side. 

I have 2 keep doing this but it's less today then yesterday. HUGE RELIEF! THANK YOU JESUS!