My pain started in late March and over Easter became excruciating with sharp stabbing pains just above my left ear plus pain over most of my head. Each morning I had to lie in bed until painkillers kicked in. Paracetamol did nothing for the pain - only Panadeine Forte and Endone helped. My GP referred me to a vascular surgeon for an emergency biopsy to check for temporal arteritis, which it wasn't, thank goodness. It was also suggested I might have Temporomandibular joint (TMJ) dysfunction. After a week or so the pain started up on the right side as well.
I was prescribed Tegratol, which messed up my body to the extent of serious nausea, a major change in my vision and dangerously low sodium levels. So, stopped the Tegratol. I then went onto a high dose of Endep (100 mg at night) and since then the symptoms have subsided in pain intensity. This week I saw a neurologist who specialises in TN and he doesn't think I have it because "it's extremely rare" to have it on both sides. He also suggested it might be TMJ, saying that the main area for TN is on the cheek between the eye and mouth. My GP said she's seen pain in various places and it's not limited to one area.I'm posting this in the hope that someone else had the same symptoms as me. Most of the time it's like a boring pain around my ears, ranging from low level pain to medium-high pain levels most of the time. I also get stabbing pain at times, mainly in the left side. One day I lay flat on my back to use eye drops and I immediately felt pain so bad it felt as if someone had stuck a knife into my left ear. Yesterday I had sharp pain in my upper jaw (LHS) that felt like strong toothache. That lasted for about 20 mins. The main trigger for my pain is cold - just dandy when we've just started winter here in Melbourne(Australia)! I have to go out, esp at night, with scarves wrapped around my face. Today I didn't have them with me and, while walking to my car, it felt like tiny pinpricks of ice cold pain on my face. It wasn't fine rain because I was in a covered carpark.
Has anyone else experienced bilateral pain? Does anyone else have the constant pain? Would appreciate any information you can share with me.
Bilateral TN is NOT as rare as the doctors and neurologists think, I too was told 11 years ago that I couldn’t possibly have TN on both sides…but I did and still do.
I have TN1 on my right side and TN 1 & 2 on my left side. I just recently had a micro vascular decompression surgery for my left side because it became resistant to meds.
Day before the surgery my well known neuro surgeon who is very experienced with TN, says to me,I have performed over 700 mvds, and have never seen a case like yours, I don’t even know if it is TN.
I told him, there is no doubt in my mind that I have TN, once you feel the horrendous pain of TN you know it’s TN. The next day as I awoke from surgery my surgeon was excited to tell me he found 3 blood vessels compressing my nerve. Confirming TN.
TN pain can be constant like a burnng boring pain and it can be fast and repetitive electric shock like. With my TN 2 pain I felt a knife stabbing me continuously deep within my ear. My lower teeth felt like all the nerve endings were exposed and tiny wrenches were constantly twisting and pulling at my teeth…I also felt pain along my jaw line, and along my nose…
Although we all share similarities with TN, no two cases are alike.
Unfortunately you’ll find that you need to be your own advocate regarding your health and your best bet is to read as much as you can, most of us with TN are more informed than our doctors.
A true diagnostic indicator that you have TN is if you respond well to one of the anti convulsants, although you didnt tolerate tegretol there are other medications that work for TN.
All this to say don’t be discouraged, most important thing to do is find a medication that works to relieve your pain, and find a doctor who will support you along your journey. Make sure you have an MRI to rule out other causes for your pain, like ms and tumours.
I hope you find relief soon, (( hugs )) Mimi
Thank you, thank you, THANK YOU!! I'm a bit fed up with medical people telling me I can't have it on both sides. It's certainly not good to hear you have this awful condition but I am pleased to hear I'm not the only one. Do you have any particular triggers for the stabbing pain? Has the pain stopped since you had the surgery?
I have an appointment with another neurologist in two weeks and will print out your response to my question and show it to him, if that's ok with you? I can remove your name from it. I'll also show it to Lyn, my GP. Once I've seen the specialist Lyn will consult with him and then put me on another medication. She didn't want to just do trial and error with other medication after my reaction to the Tegratol.
Thanks again Mimi, I really appreciate hearing from you.
Unfortunately Kaye, it’s not the doctors fault they don’t usually see many TN patients, and the literature available is a bit outdated …we usually know more because we are reading everything there is to know to find the best possible treatment options.
My triggers for the stabbing pain are eating, drinking, brushing teeth, wind, cold and washing my face among others.
My TN on my right is controlled on 800mg tegretol slow release.
My left side is pain free since MVD although I am on 1200mg tegretol slow release all together.
My left side was med resistant and I was on high doses of 3 meds all together.(tegretol, baclofen and Dilantin)
None of my MRIs ever showed a compression on the nerve, but there were 3 on my left side found during the surgery.
When the meds stopped working and I was waiting for my MVD surgery, I used a microwaveable heating pad and a lidocaine mix cream called EMLA that you apply to your face and it numbs the area. Both of these helped take the edge off a little.
Good luck at your neuro appt. let me know how it goes.
Mimi
Thanks Mimi. I realise that most doctors don't see a lot of patients with TN but the neurosurgeon I saw last week is supposed to be a specialist in the field. However, as you say, maybe he's never seen anyone with bilateral TN before.
Thanks for all the info you have given me. I will let you know how the next appointment goes.