My grandson took mri and it said he didn’t have TN . We’re at Disney World and he’s having excruciating pain almost like seizures! I don’t know what to do… I just want to help ease some of his discomfort, any suggestions would be appreciated. Thanks in advance . Worries Granny
A standard MRI will only rule out other factors such as tumours.
Micro vascular compressions can be checked with and MRI with contrast and a 3D CISS scan. Has your grandson had these?
I guess over the counter meds could be co-codamol but the codeine never really helped me.
Has your grandson had any invasive dental work as that can also be one of the causes.
A trick I was taught was to get the end of a metal spoon and tap your teeth from below and the side. If both hurt it is likely a dental issue. If it doesn’t hurt when tapping the side, then it is likely TN related.
Good luck in easing his pain,
No , he is 14 yr and he had facial pain a few months back. Thought he had TN then but by the time he got into neurologist and got the MRI he wasn’t having any problems. Today he has had 3 episodes the last one lasted for 20 minutes of him whimpering and shaking just wanting some relief. I saw someone recommended CQ10 so I’ll try that until we can get him to another neurologist appointment. Thanks for replying.
Also his dad says he has it as well. I don’t know if there’s anything to this being hereditary but I will let the dr. Know for sure
There is a belief that some of these conditions can be hereditary.
I would suggest completing a headache diary but also try to ascertain his level of pain and also where the attacks are and how frequent. A doctor/neurologist will want these and it may help in a quicker diagnosis, so might as well get ahead (no pun intended).
I participated in a study at Yale university in regards to hereditary several years ago. I didn’t expect to get any information but might be a place to check. I had to have 2 other family members take the DNA test to compare against mine. So sorry to hear about your grandson. On my quest I was given a drug , I think was either Tegretol or trileptal an anti seizure medication that also was effective on 1 nerve pain & was diagnostic & relieved the pain immediately. Perhaps the neurologist could prescribe it for your grandson.
Thank you for the great advice
Thank you I will be sure and mention this . Hoping for some relief soon.
Dave 2505 is correct that you cannot tell if they have TN by a standard MRI they usually go off of mainly symptoms that you have which is it being only on one side of the face divided right down the middle with Electric shocks or like a knife stabbing you and turning and if the face is touched it feels like somebody’s put it on fire and sometimes there is a trigger point that activates it mine is my ear anything in my ear or around my ear like glasses can activate my pain also stress sense his dad has it then he can tell from the his sons symptoms weather he may have TN or not At the beginning over the counter meds work but then I had to bump it up to prescriptions of course and morphine never worked for me Tordol works to alleviate the pain which I take when it’s so severe that I can’t stop the pain with my oxycodone and I’m at the ER for that I hope that you can find out what’s going on i’ve read a lot about this and usually you don’t get it until you’re after 50 and less you had a tooth polled that caused the damage or an accident of some sort I have also read that it could be hereditary but most people do not get it until after 50 years old no I don’t know about anybody else I’ve never had the shaking that you’re talking about And I don’t remember reading any thing about people shaking when they have an attack so I’m not sure hope he gets into a neurologist soon
Thanks for the information. We’re at the ER now. Hoping for some relief and answers. I think the shaking is what he does because the pain is so unbearable. He also smacks his leg or a wall on the side almost as a reflex he use to hold his head on one side.
The ER dr said that he definitely has TN. So now we’re hoping to get some treatment for this pain he’s in
Until you get proper medication subscribed - try heat packs…
These I always try first and use them of a night…
I also wear a warm hat, even to bed in winter to keep my head warm & prevent attacks.
All my TN comes in Winter with cold weather & goes away in Spring/Summer.
Warm drinks help and start him on 1000mcg B12 per day - what his body does not need it will wash out, but B12 builts up the nerves sheaths and makes them stronger, it has been a great thing for me - I take it every day… and over the years the attacks have been less pain. I have had TN since 2004 & can get it on both sides of my face.
I have to pick the time to get dental checkups - warm weather only … My dentist was the first person who gave me a script for Tegretol… until I saw a Neurologist .
I was lucky because he knew what it was… agree with the metal spoon on tooth, sometimes it makes the pain go away… if it gets worse, then it could be a tooth issue.
best of luck to get a Neurologist who will help & monitor your grandson…
Nothing over the counter has even helped me… GP
Thanks for the helpful advice. He lives in Georgia so hopefully that will help his TN. I will go and get the b12 tomorrow and start him on that as well , thanks again.
This breaks my heart; 14 years old just awful. I underwent MRIs CT scans MRA and didn’t show anything. I got fed up with all medications as nothing touched it. Neurologist couldn’t help me. I searched upper cervical chiropractic which massively helped me and led me to Dr Gerald Smith (dental). I didn’t live near close so he recommended a dentist in Maryland. Nothing short of a miracle for me as alignment was the problem. I still get a few flare ups as my treatment continues getting the correct position for my teeth. This isn’t mainstream medicine and not all agree but I couldn’t flick through this without letting you know there is other options. If you google Gerry Smith you will see the connection from teeth to healing. Whatever you choose I pray he finds the relief he needs.
If you’ve been to the ER, was the DR a neurological consult, if not I would definitely get a second opinion and if it was me, another 3-4 on top.
You mention he shakes does he only have pain or does he get any other symptoms such as a droopy eye, watery eyes, excess sweating, earache/tinnitus, congestion or any other autonomic symptoms?
Also, did the ER not suggest/prescribe you any medications? If not, I think you might be able to buy over the counter Lidocaine Patches. Of course check with the Chemist/Pharmacist but they can be used for over 12s. Lidocaine is used in dentistry to numb the gums.
My issues started very young. I look back now and I know I started having issues at 7 years old and it has taken me 42 years to be diagnosed and given targeted medications.
I have also had issues with my neck as I would find a position for my head that would alleviate the pain too. However, the physiotherapy would cause me more pain as with my condition, SUNCT, stiff shoulder/neck muscles can cause attacks.
I thank you for taking time to give me some helpful info. I will google the Dr as well . He lives in Atlanta so I’m hoping she can refer him to a dentist that can help as well.
He does have excessive sweat and his eyes tear up while he’s having the attack.
There is a theory that the TN is an effect on the Trigeminal Nerves at the side of the face but also that it can be a caused by damage to the Trigeminal Ganglion region at the back of the head.
The thought process behind Trigeminal Autonomic Cephalalgias (think pain attacks versus additional features such as showing symptoms of being ill without an underlying cause such as a cold or flu) is that it also impacts the Hypothalamus and other regions that are currently impossible to scan, so most of these conditions are diagnosed through elimination, rather than through most diagnostic tests.
Medical marijuana works for me. Doing it for years. Better than chemicals
Take home to the Emergency room and ask for Dilantin instead of Morphine to ease the pain … Massage the upper neck area have him sit STRAIGHT up turning his head side to side as far as possible, listen for a pop sound of the vertabrae. Use ICE and HEAT if possible on the neck and head area near the base of the spine if tolerable. I know this will be PAINFUL, this may help if the vertabrae is pressing on the nerve from sleeping in an arkward position. I have tried this and got some relief. I am just sharing. I am a SUFFERER ALSO …