Type II Trigeminal Neuralgia

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Comment by waigmacker 1 hour ago

Yes, a 7th one & he is still evaluation the case.  I've been to him twice & he said once he gets the rest of the records he will contact me to come back in. It's been about 6 wks & I haven't heard back from him. I'm very hypersensitive to meds & they cause neuro jerking.  I'm going to wait about 2 more wks & if I don't hear from him I'll call & see if he has come up with anything yet. 2 other drs are also evaluating the case & should receive the recs this coming weeks. They are pain management drs. I was on 3200 neurontin before & they had to bring it back down due to reactions.

Comment by Richard A. "Red" Lawhern 23 hours ago

Waigmacker, unless you are hyper-sensitive to neurontin and tegretol, the doses you are on are below the range normally used in trigeminal neuralgia pain management.  If you were able to tolerate higher doses of either med, you might not need so high a dose of the Oxycontin.  Have you talked with any neurologist about making that transition?

Regards, Red

Comment by Carol Harmer yesterday

Thank you Min....3 months since operation....numb cheek..lip..nose..eye teeth gums..what can you do eh!!  You have to be positive....Im hoping this Anethesia Dolorosa is not permanent...If it is ...well I will double the Amitriptaline....and the Triliptal...and Lyrica...Then  I will be ok....or if  Im not...I really wont care ha!! double yayyyyyyyyyyyy  xx

Comment by Min yesterday

Love your gusto Carol.  I take Amity. too. but  only 25mg. You are good!! YAY!!

Comment by Carol Harmer yesterday

Ha No elstep...I thought Id lost it for a while...then I thought..no...Im still me...damaged...but alive...obviously no thanks to the French healthcare system....and I am fighting back....It will not beat me....well not yet anyway ha!!  you have to keep positive...what choice do you have....I have my dark days...then I think ..no...snap out of it...go bite your tongue/lip of cheek...then Im ok....have to say tho..drugs do help...Im on 150mg Amiltripaline...how can I be depressed...they are anti depressant drugs....yayyyyyyyyyyyyyyyyyyyy  xx

Comment by elstep yesterday

Carol your personality shines through, at least the dentist was not able to extract that!

Comment by Carol Harmer yesterday

I know exactly how bad dental nerve damage is....5 years ago In France a dentist did this to me....I am sick of hearing dentists couldnt cause TN..ATN...well mine did !!!!! I didnt have it before going to the dentist....and because I didnt know what it was...I went back to him on three ore seperate occasions....and he took three more teeth out...On my last tooth extraction..I thought wow...thats it...no more pain....little did I know...the start of a 5 year battle with this dreaded illness...so on my last tooth extraction...a week later this pain just wouldnt go away...I went back and he said...in french..basically iv done what I can ...now go away...Away I went and lived on Paracetemol for a year....Then on holiday in Spain..this pain hit me like a sledgehammer.....the right side of my head and face wa excruciating....went to a Dr here and he said it was Trigeminal Nuralgia..type 1 and 2..and there was no cure...gutted...totally gutted...spent the next year getting the meds right...but  wiped out...no one knew...who could possibly understand...all my friends and family thought I had migrane...and gave helpful hints on what not to eat for migraine...lukily instead of getting them all in one room and blowing them to pieces...I smiled and agreed...I wouldnt eat cheese...chocolate..etc etc ETC...all the while wanting to crawl away in a hole forever..... I wont bore you to death about what the next 4 years were like...because I was trying the get the meds right...finally did....and was fine...little breakthrough pain..but strong intravenous drugs helped that....I used to crack the phial and put drugs in water....thats how I coped...then November the pain hit so bad...and no matter what I did I couldnt get rid of it for more than 2hrs at a time...I ended up in A&E...first time ever with this...and they gave me NRI scan...saw the artery and veins intertwined with nerve and suggested MVD...Now I was in a foreign country....couldnt speak the language...If they had told me they was going to rip out the nerves 1 by 1 I would have agreed..anyway finally decided against MVD...didnt trust the surgeon that much....and I was right ..because he did something else...some balloon thing and its gone wrong and left me with Anethesia Dolorosa...let me tell what a basted that is....AND the great thing is that now I am on more meds than before....AND  the TN pain is coming back...joy of joys....and according to my surgeon in Spain....I cant have MVD for at least 2 years because of the nerve damage...So now I am left with half my face numb and terrible burning pains....I have to take meds 3 times a day...extra meds as well as the concoction I was taking  before...I bite my lips...tounge..cheek on a regular daily basis...coz I cant feel them....so have little blisters every where...nice !!!  drink through a straw..otherwise I dribble it...again nice!!!  I have got from being virtually teetotal....to a vodka and orange swilling loon...dont care...only way to cope over the weekend...Im too proffessional to do it a work day...It hard enuf doing what Im doing with meds...lets alone a hangover as well !!!...So my friend...do I beleive Dentists can cause TN1 and TN2....sadly so...I will never visit a dentist again...I would rather my teeth dropped from my very head on my dinner plate...I went to a dinner party a few weeks back...low and behold a dentist was present....I was good though...I kept sitting on my hands so I wouldnt put them round his throat and throttle him...whilst screaming in a vodka induced rage..exactly what I thought about him...his profession and where he could stick his drill......keep your chin up hun...maybe there is a light at the end of the tunnel..For now...my advise is this...take the drugs...all of them ...as many as you can handle....because I think dental damage cannot be fixed by surgery...and sometimes surgery leaves you in a worse state...Trust me...I am living proof......oh and French people...hate them ha!

Comment by waigmacker yesterday

Thank you Luke.  It's really hard because I cannot imagine living like this the rest of my life.  I'm 48 and to be on these meds for life is horrible.  I hate the dr that caused this & it's really sad they don't take responsibility.  I am in the process of putting it together on youtube and hopefully sending it to the Doctors and other shows. No one wants to face how bad dental nerve damage is.

Comment by Luke yesterday

Waigmacker, who knows what the future holds. Nerve damage might be something readily treatable. Hang in there !

Comment by waigmacker yesterday

I have ATN Mandie.  I really think doctors are confused about ATN.  In my words they maybe dealing with 2 different types of ATN is why they cannot treat it properly.  Mine is caused by dental trauma & is 24/7 pain.  I'm on Oxycontin 6omg every 8 hrs with 200 tegretol & 400 Neurontin & 75mg Diclofenac.  I have to take them together or they don't work. I also take valium before bedtime.  I tried taking the meds separately & my pain doesn't go down very much so for the last 4 days I've been taking them together & it's working so far.  I have 2 drs reviewing my case right now because my family dr said with the doses I'm on for Oxy I need to see a pain specialist. It's hard finding one because pain clinics want to inject people. Neurologists are useless for this condition after going to about 7 of them.  I've been searching for 3 yrs now so I'm hoping atleast 1 of these pain drs takes my case. The reason why I'm saying they are confused about ATN is I truely believe the way the nerve was damaged makes a difference on how it should be treated.  From what the Mayo Clinic told me since the nerve is already damaged no procedure is recommended because it can damage it more.  Good Luck with finding a dr that can help you.

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