I was diagnosed with TN back in March. I finally had my first MRI and MRA done this week and got the results back. The neurologist tells me that my results are perfect. No abnormalties or structural damage. They say that my TN is viral. Medicine is my only choice.
Anyone else have TN from a virus????
Hi Edi,
MRIs are done to rule out other possibilities /explanations for your pain. They are looking for MS plaques, tumours and other abnormalities. So it’s a GOOD thing your MRI results were good.
“They” can’t say your TN is viral unless they mean you have post herpetic neuralgia ( I’ve copy/pasted an explanation of what that is below…)
There is NO known cause for TN, only “Suspected” causes…
I’ve included a list below
Medication is generally the first choice of treatment usually an anticonvulsant med.
Many people are able to live and function normally with no pain on meds.
Remissions are possible and occur for different lengths of time.
That being said TN is said to be progressive, so eventually one med doesn’t cover the pain anymore so you try 2 or 3,sometimes you only have to switch the first med to something different and that works.
BUT we are all different, we share similarities, but no two people share the same course…it is very hard to generalize with TN.
Eventually many people choose one of the procedures available that offer short to longterm success but NO guarantees. It’s a personal decision that should be made after much research and more than 1 consult with a neurosurgeon, 2-3 opinions would be even better.
I hope this helps…
(( hugs )) Mimi
Below is a list of “known” and “suspected” causes:
A blood vessel presses against the root of the trigeminal nerve.
Multiple sclerosis - due to demyelinization of the nerve. Trigeminal neuralgia typically appears in the advanced stages of multiple sclerosis.
A tumor presses against the trigeminal nerve. This is a rare cause.
Physical damage to the nerve - this may be the result of injury, a dental or surgical procedure, or infection.
Family history (genes, inherited) - 4.1% of patients with unilateral trigeminal neuralgia (affects just one side of the face) and 17% of those with bilateral trigeminal neuralgia (affects both sides of the face) have close relatives with the disorder. Compared to a 1 in 15,000 risk in the general population, 4.1% and 17% indicate that inheritance is probably a factor.
POSTHERPETIC NEURALGIA
When chickenpox is contracted during childhood, the virus that causes it, herpes zoster, can remain dormant for decades in the nerve bundles near the spine. The virus will sometimes reactivate, causing the condition known as postherpetic neuralgia, or more commonly, shingles.
In cases of postherpetic neuralgia, the reactivated virus travels around the affected nerve, causing pain. The herpes virus can affect the trigeminal nerve, resulting in postherpetic neuralgia, or pain, in the facial areas supplied by the trigeminal nerve.
Mimi, you are absolutely right! I am happy the MRI didn’t show anything! But I just feel lost! The pain is so bad and meds haven’t been working ( I’m on the 4th type). A part if me wanted the MRI to show the vessel pushing against the nerve so I could have had the procedure done with the “cushion” so I could have relief!! I know that sounds bad but I just can’t live with the pain anymore! For the first time in my life I wished I was dead while I was sitting in the ER getting pumped with morphine!!! Ugghh!!!
Edi, none of my MRIs ever showed compressions. I just recently had the surgery ( MVD) and my neurosurgeon found 3 compressions!
Have you had a consult with a neurosurgeon yet? After trying 3-4 meds most neuros will agree to refer you.
When my TN 2 became med resistant last September, ( I have bilateral tn) I asked my neuro for a Referral to consult with one.
Then I consulted a 2nd surgeon. Both agreed to do my surgery.
I had surgery in April with great results.
Here’s a link to my journey…
http://www.livingwithtn.org/group/mvds/forum/topics/my-experience-with-mvd
Most neurosurgeons can’t see compressions until they are inside.
My TN was med resistant on my left side, horrid pain all day every day with very little respite and on 3 high dose meds…now I’m only on one med, I have no pain. I’m still in recovery mode.
read as much as you can about the procedure and only consult with neurosurgeons who specialize in TN and mvds and have performed many!
We have to advocate for ourselves it sucks because we have enough with just dealing with the pain, but we have too.
Read my 7 days post op post if you read anything at all in the above link.
I completely understand how you feel, I’ve been there, I know…I hope my story offers you some hope.
Huge (((hugs))), we must have hope, Mimi
Hi Edi
I’m so sorry you are suffering so much right now. I think many of us have the “I can’t bear this one moment longer” thoughts. In my own experience this comes in waves, and I have better periods in between. When I am at the end of my rope I find a few more inches by remembering that sometimes the pain relents a bit. This gets me through.
I agree with Mimi that you need to see a neurosurgeon. My MRI does show the superior cerebellar artery lying right on top of my trigeminal nerve in several places, but my NS won’t know how much it does in fact push in until he gets in there.
Hang in there.
Bellalarke
Thanks for your kind words and support!!!
Edi,
I recently pretty much had the same MRI results...and the meds I am on make me feel as though I have early onset Alzheimer's. High price for some kinda pain relief. I am pretty sure I have ATN since I have a headache every single day just to varying degrees. The face pain also comes in waves and sometimes last for a few minutes to a few months. Unfortunately in my situation the attacks have progressively gotten worse and I have a sneaky hunch I am developing the same crap on the other side...And I have been there where I feel like I wish I was dead...Trust me. I wouldn't actually do it, but I know the feeling. I live out in BFE where no one even knows what TN is. So when I go to the ER for this they leave me in a room for a few hours, give me a quick shot of some pain med that I already know wont work and send me home. Im almost certain that one day I am gonna make the "DO NOT give this person narcotics" list just because that's the only reason I go to the ER and I tell them that 90% of their pain meds wont work anyways. BUT, we all have to hang in there any try to find support in the areas its there and remember that THIS WILL NOT BREAK US!! Luckily for us someone started this great site and we always have friends here. :)
Maudie!! What is going in with you is exactly what is going on with me minus getting it on both sides! I live in an area that is behind the times as well so I completely feel like a lab rat right now. Ugghh!!! I’m so happy for this support group! It’s so hard to try to talk to someone who doesn’t have TN. My aunt has fibromyalgia so she can somewhat relate. But my friends think I just have “headaches”. Drives me crazy!
Well all we can do is hope for the best I guess!
Thanks for sharing!
Can you travel to consult with a neuro surgeon? I had the top dog in MVD. Do mine…just like Mimi…nothing on MRI… He does not consider those for diagnosis!, he’s been doing them since 1970s
Dr ken Casey in Michigan…will consult by email for free.
Have you read the book on TN that is our bible here? Striking Back. By dr ken Casey
LASTLY have you tried asking for topical med like lidocaine patches…no dr visit…just make them call it in… Somebody here out of 100s I told to do this
and their dr said…no that won’t help…I hope by now that dr was fired!
Here is a two year good med list I collected from here…eventually meds can quit working as is progressive…but the more you learn…the better your treatment will be!!
Edi Hall, so sorry you are with TN pain, I do feel for you.
Before you were diagnose with TN back in March, did you have any dental work done previously ? I ask this question as it seems some dental procedures can start this TN pain.
I suffer TN type 2, my MRI came back clear and I too was at a loose end as my GP and dentist did not know what to do, the Neurologist and Maxi-Facial Clinic said the TN pain was all down to stress. My GP also said it maybe a deep infection and gave me antibiotics (two courses). I myself was sure my teeth was the cause as each tooth felt like tooth-ache even though I had no cavities, over the course of 5 years I did have several extractions as I pleaded with my Dentist to stop the pain (after each extraction the pain stopped) I had weeks/months of pain free days. :)
Looking back now I reckon the TN pain was caused by one particular dental visit 6 years ago with a not so very good dentist, it was from this certain day back in 2007 the TN pain started. But! saying this I also reckon this type of nerve pain must be hereditary (the pain must be easily triggered) I say this because my father suffers migraine headaches, my grandfather also had severe tooth pain and had many extractions before he was aged 40, my Auntie also suffers Cluster Headaches. Looking back I can remember suffering bad headaches in my teens, also when under stress my nerves seem to fire-up, so I also say it must be how some of us are wired and as we get older we are more susceptible and are bodies grow and develop this TN pain more easily than others.
In your case I would defiantly try the meds for virus infection, they may work if that is the cause.
Good luck.
Kind Regards Wes
Just wanted to give a quick update. Had the neurologist apt today and she really helped a lot. In addition to the trigeminal neuralgia, I also have a Chiari Malformation. Basically its a birth defect in my case that allowed the cerbebellum part of my brain to slip down a little and puts pressure on my spinal cord and brain stem. This is an additional cause of the severe and debilitating headaches I get on top of the headaches I get from the trigeminal neuralgia. I do have an open SSDI case, so I guess I need to call them with the new additional diagnosis. We are going to be upping the Tegertol and she also added a pain reliever/anti-depressant called Effexor. She is recommending MVD as I have the TN in all 3 branches. The headaches from the CM will never go away...and it certainly does explain some of the other weird things that go on with my brain and body. She said its likely going to take several months to get the right combo of meds to treat both the TN and the CM simultaneously. Will be having an angiogram (I think that's what she called it) in a few weeks to se if the TN is cased by some blood vessels or arteries in that area. From there it will be on to the neurosurgeon. I have asked to go to the Shands Hospital in Gainesvill, FL if I opt for the surgery. Its part of the University of Florida and is an excellent teaching hospital. If anyone would like more info on the Chiari malformation, I would be happy to share what I have now learned.
Glad your Neurologist was able to help a bit more, seems you are on the right track and getting the correct help etc.
If only it was as easy as this here in the UK to get the correct help, the UK seem so limited on help and support regarding TN. Some health professionals I have seen and spoke to have never heard of TN type 2, there seems no understanding of TN here even though its readily documented across the internet.
I have the three branches active with TN type 2, my GP, Dentist, Neurologist, Maxi Facial have all said STRESS is the casue, my Dentist has said Hyper Sensitivity. My MRI specialist said there was really nothing they would want to do because I was only 36, she said keep taking the Amitriptyline and try and avoid stress. Doctor put me on Tegratol which had terrible side-effects so it was back to Amitriptyline.
Here in the UK, they don't talk about MVD treatment, its one step forward and two steps back. :( My GP said its a chronic disease and can only be treated with medication.
Hi Maudie,
I am glad you have got yourself to a doctor who can help you. I wanted to share with you that I also have a Chiari Malformation, which was decompressed in 2003. Like TN, ACM is a disorder that very few doctors are well versed in, but that does not mean you will suffer with the Chiari headaches forever. I, like you, had several very strange symptoms from the ACM before my surgery, but all of them ,including the headaches, were almost completely resolved after surgery. My MVD surgeon feels that my bilateral ATN is, if not a result of ACM, at least related to it.
I wish you the best of luck with your treatments, and please don’t hesitate to contact me if you have any questions.
Best
Christine
I haven’t had any dental work and plus back in January they had me on tons of antibiotics thinking I had a sinus infection.
I start a new med today so I’m crossing my fingers!!!
Thanks for your support and helpful info!
Edi
Glad your Neurologist was able to help a bit more, seems you are on the right track and getting the correct help etc.
If only it was as easy as this here in the UK to get the correct help, the UK seem so limited on help and support regarding TN. Some health professionals I have seen and spoke to have never heard of TN type 2, there seems no understanding of TN here even though its readily documented across the internet.
I have the three branches active with TN type 2, my GP, Dentist, Neurologist, Maxi Facial have all said STRESS is the casue, my Dentist has said Hyper Sensitivity. My MRI specialist said there was really nothing they would want to do because I was only 36, she said keep taking the Amitriptyline and try and avoid stress. Doctor put me on Tegratol which had terrible side-effects so it was back to Amitriptyline.
Here in the UK, they don't talk about MVD treatment, its one step forward and two steps back. :( My GP said its a chronic disease and can only be treated with medication.
Its sounds as though you are in really goods hands Edi, I hope all goes well for you, I really do. :)
There are many members here that really do understand what we all are going through and offer their help and support when they can.
I so wish my family and I lived over in your great country, seems there is a far better understanding of Trigeminal Neuralgia especially the type 2.
All the best for now.
Regards Wes
Did your neurologist tell you about surgery available for Chiari Malformation?
Also, an angiogram isn't 100% accurate in seeing compressions. Just an FYI.
maudie1979 said:
Just wanted to give a quick update. Had the neurologist apt today and she really helped a lot. In addition to the trigeminal neuralgia, I also have a Chiari Malformation. Basically its a birth defect in my case that allowed the cerbebellum part of my brain to slip down a little and puts pressure on my spinal cord and brain stem. This is an additional cause of the severe and debilitating headaches I get on top of the headaches I get from the trigeminal neuralgia. I do have an open SSDI case, so I guess I need to call them with the new additional diagnosis. We are going to be upping the Tegertol and she also added a pain reliever/anti-depressant called Effexor. She is recommending MVD as I have the TN in all 3 branches. The headaches from the CM will never go away...and it certainly does explain some of the other weird things that go on with my brain and body. She said its likely going to take several months to get the right combo of meds to treat both the TN and the CM simultaneously. Will be having an angiogram (I think that's what she called it) in a few weeks to se if the TN is cased by some blood vessels or arteries in that area. From there it will be on to the neurosurgeon. I have asked to go to the Shands Hospital in Gainesvill, FL if I opt for the surgery. Its part of the University of Florida and is an excellent teaching hospital. If anyone would like more info on the Chiari malformation, I would be happy to share what I have now learned.
Yes, we did discuss the surgery for CM. Kinda want t try the medication route first to see if I can get relief from that. She did also tell me that the angiogram doesn't always show vascular compressions, but he said its worth a look to see. She said its not uncommon for angiograms to show "no cause". But that just because nothing shows up does not mean there aren't compressions that couldn't be seen or were missed. And she also said sometimes TN occurs for unknown reasons....
ihold said:
Did your neurologist tell you about surgery available for Chiari Malformation?
Also, an angiogram isn't 100% accurate in seeing compressions. Just an FYI.
maudie1979 said:Just wanted to give a quick update. Had the neurologist apt today and she really helped a lot. In addition to the trigeminal neuralgia, I also have a Chiari Malformation. Basically its a birth defect in my case that allowed the cerbebellum part of my brain to slip down a little and puts pressure on my spinal cord and brain stem. This is an additional cause of the severe and debilitating headaches I get on top of the headaches I get from the trigeminal neuralgia. I do have an open SSDI case, so I guess I need to call them with the new additional diagnosis. We are going to be upping the Tegertol and she also added a pain reliever/anti-depressant called Effexor. She is recommending MVD as I have the TN in all 3 branches. The headaches from the CM will never go away...and it certainly does explain some of the other weird things that go on with my brain and body. She said its likely going to take several months to get the right combo of meds to treat both the TN and the CM simultaneously. Will be having an angiogram (I think that's what she called it) in a few weeks to se if the TN is cased by some blood vessels or arteries in that area. From there it will be on to the neurosurgeon. I have asked to go to the Shands Hospital in Gainesvill, FL if I opt for the surgery. Its part of the University of Florida and is an excellent teaching hospital. If anyone would like more info on the Chiari malformation, I would be happy to share what I have now learned.
Its sounds as though you are in really goods hands Edi, I hope all goes well for you, I really do. :)
There are many members here that really do understand what we all are going through and offer their help and support when they can.
I so wish my family and I lived over in your great country, seems there is a far better understanding of Trigeminal Neuralgia especially the type 2.
All the best for now.
Regards Wes
Well as I lay here in bed with gabapentin, some new drug and Percocet with no relief I feel so helpless! This has got to be the most frustrating thing ever! Something has to be done! If my dog was in this much pain we would put it down! Ugghh