Symptoms of Trigeminal Neuralgia - Diabetic type 1.5

Posted , 9 users are following.

Hi Everyone,

I am from South Africa and a week ago my dad has been having similar symptoms to what is described by Trigeminal Neurlagia. At first he went to the dentist then after x-rays, the dentist referred him to our GP who has dealt with patients with this. He was given amitriptyline as he had encephalitis when he was younger and he took Tegretol but was taken off it as the side effects were severe.

As this is new to us, and quite overwhelming I am trying to find out from others what there symptoms are and if anyone with Diabetes has had this.

He says the is always this constant dull pain, increasing and decreasing throughout the day but at nightime it is always unbearable and lasts longer than a few minutes, sometimes hours! It's not like the sharp pain described but everyone describes there pain differently.

Has anyone had anything similiar, where the is there all day and at night it is severe?

I would love to hear back from anyone, as like I said, my family is trying to figure this out.


Dean Bassett

2 likes, 17 replies

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17 Replies

  • Posted

    Hi Dean

    If your dad has been prescribed medication already and been taken off Tegretol, I can only suggest he asks to be referred to a Neurologist and request an MRI scan.

    As you say everyone suffers differently with different symptoms. But for me I get the electric shock feeling shooting right through my right lower jaw and at one stage the pain was so severe it shot through my ear. It can spread to the eye and head too.

    I'm sorry I cant be of more help but definitely get your dad to see to the above.

    Let us know how you get on.

    Regards Gloriana


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  • Posted

    Hi dean,

    Sorry to hear about your dad, I'm new to all of this too, I was diagnosed last month with TN but I'm not 100%.

    When I have the pain it is constant all over my right hand side, and is severe for a few hours and eventually eases but is still there.

    Hopefully you get more answers. You should definitely get your dad to a neurologist.

    Keep us updated smile


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  • Posted

    Hi Dean

    I am so sorry to hear you dad has this awful condition.  He has my sympathy!

    Maybe his pain is worse at night because he is lying down and the nerve is resting on the blood vessel constantly? Has he tried either laying completely flat on the mattress or being propped up on a few pillows?  Ive had awful pain at night and ive found slightly turning my head to the left face up (my pain is the right side of my face) helps a bit.  

    Id also recommend he sees an neurologist asap for an MRI scan.  

    My pain ranges from feeling like someone is ramming a screwdriver up my tooth and into my jaw, electric shocks flicking across my cheek/lower jaw (these for me are the worst) as I can deal with a constant pain but not the flicking shocks. 

    I think everyone suffering from TN feels helpless as there are treatments out there but so far no cure.  

    Good luck and I hope your dad finds some relief very soon!!

    Paula x

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    • Posted

      I will definitely suggest he tries sleeping differently, to help alleviate the pain.

      He doesnt really getting that sharp pain, but more like a severe pain through the left side of his face. It is strange, but its been a few days so as I keep reading Im trying to see the different options out there.

      But thank you for the support!

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  • Posted

    Hi Dean, Sorry To Hear About Yet Another TN Sufferer, The Standard Practise For For Doctors Is To Give A Dose Of Tegretol {carbamazapine } For TN, But TN Is Not A Dull Pain Such As Swollen Legs TN Is Much More Acute Covering One Half Of The Face. Maybe Best To Get A Second Opinion
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  • Posted

    Hi Dean,

    Your Dad can try half a dozen different Convulsion meds similar so tell him to go back and get some more theres no need to suffer in this day en age.

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  • Posted

    I appreciate all the support, more I read about this, you find different types like type 2b which is a dull constant pain across the face.

    As it has been a few days, we will visit whatever options there are because its horrible to see him like this.

    He had a lower back injury, pulled muscle but to the point where he was taking high dosages of anti inflammatories everyday and on his back for 2 solid weeks. Does anyone know of a connection between the two, because this happen jsut as he was recovering?

    Sometimes the symptoms can be so similar and the diagnosis unknown, or in this case it has been thought to be Trgeminal neuralgia.

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  • Posted

    Hello Dean,

    I will apologise now as not great at explaining myself but would like to contribute. 

    Im 29 and had TN for 10 years. I have also got a rare problem with it's my archery goes under the trigeminal nerve so my surgeon says it complicates things a little.

    i started with sharp burning pains going through my face into back of my head and it felt almost as though I had sever sinus problem just in the right side of my face. So I visited the GP who said it sounds like TN so she put me on carbamazepine and tramadol for the pain but after a week this did not work so on my check up the doctor put a emergency referral to see the neurologist who got me in for a MRI within a few days which confirmed the TN, they put me through every medication the could such as gabapentin, lamotrigine and baclofen etc but nothing was working even with morphine.the pain in my face is like your dads in the sense that I have it all day everyday in my right side face and also in my left (have TN both sides) the pain which is the all day is a dull burning sensation which gets worse then I get a more intense burning feeling and then the electric shocks start which is mainly around and in my eye also radiating to the ear, jaw, forehead and teeth. The pain at its worse makes me blackout and the Drs said my body gives up as such. Next week I'm booked into have microvascula decompression surgery which I'm hoping it will help. 

    The point I'm trying to make is you need your GP to refer your dad to the neurologist as your dads pain will only get worse over time and with your dad having diabetes it will complicate things the longer its left because as you know the body of someone with diabetes have a less tolerance to being unwell and being in pain. I have worked with diabetes for years and would hate to think my patience would have to cope with this. Hope by me explaining how my pain is will help.

    I truely am sorry your dad is suffering from TN, I would not wish it on anyone.

    best wishes and please keep us updatedsmile.

    Ash x


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    • Posted

      Hi  Ash.I have TN on the right side of my face.It has base camp beside my nose.Tho I am on Lyrica I get excruciating breakthrough movement pain, as I refuse to feed the monster any more than 75mg x 3 .My heart goes out to you being so young.I am 74 and a recent MRI shows I have the left side of my face with TN  in the near future too.I am so scared I will not be able to cope.Please tell me what it's like And medications.Thank you
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    • Posted

      hello, thank you so much for your message. I am very sorry to hear that you have TN let alone on both sides. I hope have a good group of specialists around you and if not I strongly advise you see a neurologist to be referred to the neurological surgeon as they have a few good options for you including the microvascula surgery. I am not going to tell you that it's not hard to cope with because it is, the best advise I can give you is explore every option that is available to you and be relentless to see the right specialist/surgeon to get the right treatment for you and don't settle for anything less. I am on the highest doses of all medications I mentioned in the last post and have very little relief from them and the morphine does very little other than making me feel drowsy which is not ideal when I have a 2 year old son. I do have to have someone with me now 24/7 due to the black outs mainly for my sons safety and to make sure I've not hurt myself seriously. As you can imagine I can not wait for the 12th may for the surgery, I just hope it works. Please give it your all to get your treatment, take each day as it comes and be as strong as you can be. 

      I would love to keep in contact to hear of your progress.

      take care and best wishes x

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  • Posted

    Hi Dean Good to hear from you but very sorry to read about your dad.

    i suffer fromTN but have no history of diabetes therefore cannot advice on that.

    Like others that have replied, your father's symptoms aren't consistent with trigeminal neuralgia except the horrendous pain part!

    TN is an intense, localized pain, normally confined to one side of the face and as the trigeminal nerve branches above, along and below the jaw line, this acute pain is felt there. For me, just stroking the side of my face, triggers it off. 

    I think something else is going on with your dad, and as others have written, you need to get him referred to a specialist - a neurologist would be a good start but he is presenting a wide range of symptoms, so others opinions may help, too. 

    I wasn't quite clear when your dad started and stopped taking amitriptyline and Tegretol - would you say a bit more about that. If your interested in pursuing information on drugs, a good investment is the British National Formulary (BNF) - the physician and pharmacist's bible!

    Tegretol, just to get you started, is a trade name for carbamazepine, used to treat epilepsy and a number of neuropathic pain disorders including TN.

    Good luck, keep in touch and much respect for looking out for you father!!

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  • Posted

    Hi again Dean

    My apologies! My message contained a question but I didn't make that clear.

    'Would you tell us more about when and why your father took the two drugs?' I was a bit confused about that point.

    Thanks. Colin

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  • Posted

    Hello Dean.

    I suffer with this too.  Sometimes it's quite mild but at other times it's just out of this world pain.  

    I have MS and apparantly it's due to this, so mine does come and go.  Just as gloriana says, I get it through my jaw like toothace and I also get it in my eyes, which is pretty rough.  When I had it very severe a couple of years ago our doctor prescribed:  Tramadol and I think the other tablet was called.  Carbomazapine.  This did help, not to take it away altogether but to make it bearable.  I think you ought to seek an appointment with a neurologist just to be on the safe side and they just may be able to sort it out too.   I wish you the very best in sorting it out Take Care Netz 


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