Hey all
My TN seems to travel to one side of the face to the other and when its not the sharp electric pain i have a constant tingling aching pain does anyone else experience this ?
Hi Lou, I used to have constant/aching/throbbing/tingling in my tooth/teeth. I now get this less and less. I have developed a new ache in and under my eye, but this is just a mild ache behind the eye and painful only if i touch under the eye, which I avoid so I can cope with it. The sharp electric pain has also gone into remission. It may all come back but there is hope for us all.
Hi, Lou... over the past 16 years I have talked with a fair number of patients who stated that they have pain on both sides of their faces at different times and usually of different character on the two sides. It is unusual for the entire face to be involved simultaneously and with the same character of pain -- but still not unheard of. This combination seems to be seen most often in Atypical (Type II) TN and trigeminal neuropathic pain.
Regards, Red
Hello to you both
Thank you for you commenting on here, its very helpful i have this tingling aching feeling over the side of my face n sometimes at the back of my head.
and when it travels to the other side of my face it only stays in one side and than travels back to the other. im going to go back to the doctors and tell them this.
xxx
Lou are you a member of the ATN group on here, as they discussed this recently, you may find it helpful take care xx
Hi Lou, I suffer with TN pain on both sides, I believe it's called bialateral TN (if I've spelt it right!). The pain started on my left side first and after a few weeks it decided to travel to my right side. The tingling feelings you mentioned, I also experienced them but in my top lips, it was really weird. Because I started getting it on both sides my GP referred me for an MRI which thankfully came back clear. He also referred me to a neaurologist but due to the waiting list to be seen was so long we decided to go private. He is now overseeing my medication which he feels will get me to a point where I am pain free. Right now I can usually manage the pain but it's the side effects of the meds which are causing me so much grief.
I think Gloria Knows a lot about bialateral TN so it may also be worth talking to her about it,just a thought!
Good luck with it and take care
Mandy xx
Thanks mandy - ive seen a neurologist took 2 months to get an appointment , i am now waiting for an mri scan but i am currently on amitripline and naproxen .. ive got a doctors appointment soon and am going to bring this up with them , my tingling sensation is wherever on my head when i get the sharp shocking shooting pains like ear forehead , lip etc .. its really strange isnt it
im also experiencing side effects of tablets isnt good isit . what tablets are u on ?x
Hi Lou, Yeah, it;s def strange. My tingling feelings lasted for about 4 weeks, I don't seem to get them anymore but they were like little electric shocks in my lips, they were awful. I remenber speaking to Jackie about then and she had also had these and had lasted for about 2 weeks so you never know they may stop soon.....fingers crossed!!!
I'm currently on 600mgs of Pregabalin and 50mgs of Amitryptline,the side effects are horrid as I said before and I am also unable to work at the moment, I have been off work since Oct and have no idea when I'll be able to return, just wish I could get used to these meds!xx
Hi
I have bilateral TN had it 22 years, but no aching or throbbing or tingling, I so wish it had been lonly that,,, just either suicidal burning on the left wich cd last for hours,or firing electric shocks on the right. If I had aching I would be pleased as punch as have had seven interventions, and now lost much sight and cornea ablation in left eye from last MVD just before Christmas, as well as massive damage to all three branches, I think the surgeon sectioned the nerve without meaning to and those side effecvts are ghastly to live with but now I can go out of hte front door in chill air at least.. If no MRI has been done and no compression found I don;t know what drugs they would use as Tegretol should work on the elctric shocks if you stay with it long wnough, side efectrs are horrible, but aching, well I wish. Good luck Smithy-lou, I so hope yours doesn;t develop and mess up your life, I wa s only 33 when mine started and for four years they told me it could not be TN, how wrong they were! It never went both sides at the same time, one or the other but compressions were found both sides eventually, too much surgery now has left me very upset at the damage. Richard A is right, similar pain but different both sides from two compressions, All the best Elissa.
mandy do u recieve any benefits to help u as ur not working ?
hi elissa
i have the sharp shooting burning electric pains as well , its when they arent hitting i get the tingling sensation n aching .. i know it really hurts right !
im on amitripline and just awaiting my mri scan .. im sorry to hear about all the other courses they have given u thats not fair . hope they can work something out for u soon !!
Hi Lou, I don't receive any benefits at present as fortunately, I get sick pay from work. I think that if you don't receive sick pay from work then you should receive some kind of benefits......hope this helps. I did contact the DDA who said that we should be covered by this but whether this would help in getting benefits I'm really not sure!
whats DDA , n as soon as i went off ill i lost my job so cant even claim sick benefit - i am looking at disability tho x
It's the disability discrimination act, it might be worth giving them a call if you lost your job through going off sick. Let me know how you get on with your disability claim though, I'd be interested to know the outcome! How long have you been off work? x
nearly 4 months now
i cant call have to send paper work off to them n have filled it out so fingers crossed now !! will let u nw x
Hi
ITechnically they come from different ganglions behind each ear, but I KNOW they talk to each other, somehow through the brain stem, my belief is that the pain is seperate on each side and can be different on each side, ie firing red hot pokers on one side then burning face in a frying pan on the other. I used to get a phantom pain more like a tingling copy a few seconds after a huge firing from the opposite side, no one has every explained how it happened but it did. I was told and it turned out to be true, thatg when I had it both sides I was likely to have a vascular problem near the brainstem and therefroe it made sense it could be both sides, four Neursurgeons poo pooed that idea before it was proven though. Have you had an MRI to see?
i am waiting for an MRI scan at the moment - i spoke to my doctor about having it both sides and its cos the nerves do join in some parts of the brain so u can get it on both sides when they are sending messages to each other ..
just gotta wait to see what scan says but that probably will take ages cos it took over 2 months to get a neurologist appointment xx
If you have questions about the disability process, I'd suggest you contact Lisa (iamright). She's one of our moderators, and has worked as a disability lawyer.
Regards, Red
smithy-lou said:
i am waiting for an MRI scan at the moment - i spoke to my doctor about having it both sides and its cos the nerves do join in some parts of the brain so u can get it on both sides when they are sending messages to each other ..
just gotta wait to see what scan says but that probably will take ages cos it took over 2 months to get a neurologist appointment xx
Thanks red
i live in the uk so its different from america im nt sure where ur from x
Yes i have been having this issue for about 3 weeks now, i have stabbing pains that jump from side to side, this is a new symptom for me.