Does anyone else have TN on both sides of their face?

Thank you Alison.  FYI I have heard in a webinar on TN that TN and atypical are both TN and this neurologist said that on going TN will often progress to atypical.  Mine seems to go back and forth.  Today I am having constant pain on my face.  Good luck with the meds....none of them worked for me....and they took my mind away.  I will check out FB.  Stay in touch.

Hi Karen

Just thought I'd update you. I went to see the Neurologist last week and he says I don't have classical TN - I didn't think I did as I don't get the typical shocks; mine is more pinching, stabbing, burning, stinging (like a bee sting) with shooting head pain and like you is 70% left and 30% right side. After examination he said it was either Atypical but possible MS (as my mum had that). I had a normal MRI without contrast and it was clear of MS and any other potential issues.

Advised me to take the Tegretol again but build from a small dose of 25mgs x 2 per day. My GP had started me in 400mgs a day to increase in the 2nd week to 800mgs and the side effects were horrendous! He was not surprised that I had lost 'weeks of my life'! I wouldn't take it but since coming off the meds my symptoms have reared their ugly head so am willing to give it a go.

I am waiting for his report to see what he advises regarding future follow up and will take it from there. I hope things are settling down for you. Take care Alison

Thank you so much for the update, I really really appreciate it.  Finally someone who has a similar case to mine.  The last time I had a text book electrical shock like pain was Sept 8, but I have had some dandy other sharp pains, and every day some little shocks.  Its seems like different doctors (and websites) have different definitions of typical and atypical TN.  I am still off all meds but I am taking large doses of fish oil....based on some info I got from the US TN Association.  If you have to take the meds increase them very slowly, staring with the night dose.  I also think the nortriptlyine helped both me and the meds....but it gave me very high blood pressure.  Gabapentin had less side effects for me but it is a second choice drug (I am allergic to the first choice, tegretol).  I am also wondering if we have to put up with this till something shows on an MRI.  Some neurologists who specialize in TN insist on MRI's done only in certain places and by certain people to make sure it is done right to pick up this horrible TN.  

Please continue to stay in touch and keep me posted on how you are doing.

Hi Karen

The chap I saw was a neurosurgeon and a TN specialist but told me that due to the stinging and burning I wouldn't be a candidate for surgery. I think (only think) they only do that for Classical TN not Atypical x I'm presuming that's because it can make it worse x

My GP had said there is no cure for TN so even if they do find it could be with us for life but we may have good remissions!

Let me know how you're doing and check out the FB page take care Alison x

I do not think they want to operate unless the compression shows on the MRI.  I am on the FB page and there is lots of info there.  However when I did a posting I thought it would just be on the TN FB page...but it went out to all my FB contacts...did not want that.

FYI I can live with the pain level I have now, it is just the unknown and not having health insurance coverage when I am out of Ontario.

Hi Karen

I wondered about posting but I'm a FB novice and thought as it was a closed group that it wouldn't post on 'my wall' but it did x I'm the same as you I didn't want to share it anyone except my nearest & dearest!

Starting in the Tegretol again so will let you know how I get on 😱

Hello karen I to have neuralgia nerve damage with symtoms in both right and left tempals now if you tell your doctor this he will say Thats inpossible and he or she would be correct as there is no path whatsoever between left and right tempals the nerve leaves the brain at X passes into tempal area then branches up like a tree into your head and face I was only into my condition for 10 days when it went to both sides as for cure whit N1 N2 ? if just nerve damage it could repairbut over long time  as for being in both sides only leave Brain but is like being cut in half left or right

so you are third person i have found with the above our brains are doing something different  to the normal Larry if you wish to  relpy please do so 

Hi Larry

Have you had any trauma to explain the nerve damage? Do you get shooting & stabbing pains into your head if you brush the temples? I am having trouble wearing my glasses at the moment!!

It is such a confusing illness and it seems everyone has different symptoms; it's like a jigsaw puzzle and i'm not sure where my journey fits in with everyone else. Would love to go back 3 months when I thought my life was 'normal' but I'm sure that can be said for everyone of us 😫

I've also got almost constant pain in my right eye and aching all around, do you suffer with this?

Have a great day

Alison

Larry do you have/had any other "unusual" electric/nerve problems?  I had Horner's Syndrome...idiopathic (undertermined cause, not lung cancer thank goodness) and it went away on its own.  I have also had Wolfe Parkinson Syndrom (extra electrical pathway) and had successful surgery for it in 1990.

hello  alison no I have not had any trama mine started with an intermittent  ache in my  right tempal then a shooting up into my head, had all the  symptoms  of Temperal Artritis  (TA) which is a nasty complant all by its self had blood test proved I did not have TA doctor said could be Neuralgia nerve damage now at this stage I knew nothing about TG. 

TA is a blood infection  Neuralgia is a nerve problem I am now taking Kyrice 50 mg p/d as per my 1st post I wanted to see how many people had there symptoms transfere to the other side as said if you say that to a doctor he wil say NOT POSSIBLE Alison I will later to day come back I live in Australia ie Time differrence 

adding to last post see hannah07659 post young miss 23 years old also best site that I have found on subject TG is wikipedia  I just typed in neuralgia nerve damage list of sites come up step down  www.wikipedia after seeing all the people on this site with  TG plus god, I feel like a lucky one

Hello Susan I am new to TG but have started chat to Alison see my post Larry10478 I have found a good site for infomtion all about TG name of site Wikipedia I just type in neuralgia nerve damage list come just step dowm to you see  www.wikipedia best site there is and and yes to say what yuo have IS no walk in the park is a understatement  

Hi, 

 I am familiar with TN both as a sufferer and as a nurse. Been absent from site for a while now as have had horrendous sinus/throat infection and chesty cough all of which have made TN a great deal worse. Didn't eat or drink for two days, except for sips of water every now and then. Today's the first day I have washed, cleaned my teeth and brushed my hair. I have even got dressed!!

I fopund a wealth of information on TN on loads of sites, including this one (patient.co.uk). I recently saw a Neurologist who confirmed the TN bilaterally and added Idiopathic Stabbing Headache Syndrome!! So I really have been handed a crap filled lot in life (also have soemthing along the lines of Lupus). Still, mustn't complain. Just take the drugs. lie down for a bit and get on with life when I can.

Best wishes.

Thank you...patient.co.uk website is fantastic....lots of really good info that I have not read elsewhere.

I was diagnosed with TN June 2016.  I have tried lots of meds...they work for two days then the pain comes back.  I am also allergic to two of the main meds and the others give me bad side effects.  The meds also seem to give me constant pain while off the meds I get pain....and often but at least it is intermittent...much better than constant!  I also have the pain on both sides of my face...thought I was nuts at first but with going off the meds it is clear that I have the same thing on both sides of my face!  I am just hoping to continue coping.  I just can not imagine having MVD on both sides of my face...unless the compression shows up in the MRI....which it currently does not.

Thanks again for the info.

I am still working on the dosage which will work for me! Carbamazepine has made a difference but I have to go slowly cos of the meds I'm on for the Lupus thing, they both affect your liver. Try to persevere with the meds as it takes time for them to reach a level in the blood which has the desired effect of dampening the nerve signals which tell you that you have pain. Try hot pads against the painful area, it works well for me.

For me it is the left side of my face that has the worst pain, it's centred in my eye and is truly hideous, relentless and brings me to a state of total debillitation.

Just noticed spelling mistakes in the post! I have now got my specs on!!?

Good luck.