Hello all,
I've been lurking on the board for a few weeks but just joined today.
First off, I'm so sorry that you all are suffering so much. It makes me sad to read about your pain and frustration.
I was diagnosed with TN a few days ago after having pain in my right eye socket on and off for over a year. My PCP suspected it and my neurologist confirmed although it appears to be idiopathic as opposed to compression related.
However, I'm wondering if perhaps this dx is incorrect after reading about your struggles. My pain doesn't sound like anything I've read on here. It's painful to be sure but right now it's more of a nuisance than anything else. It’s not shock like nor have I been able to identify any triggers.
My neurologist prescribed Tegretol ( I think…some anti-seizure med) but I asked him if I could hold off on taking it. I’d rather not take daily meds with unpleasant side effects until I really have to. (I understand that this condition tends to get worse over time.) Right now if the pain gets to be more than I can take I can usually control it with Tylenol 3. (Getting my doctor to prescribe it for me is difficult, but that’s another issue.)
Does this sound like anything any of you have experienced or does it sound like my doctor is barking up the wrong tree?
Thanks for your time
Hi, I do hope that your doctor is wrong and you are not suffering from TN. Please be something simple and after treatment all the symptoms be gone forever. Blessings…
Have you had a special MRI to rule out compression?
Thank you Seow.
Seow W said:
Hi, I do hope that your doctor is wrong and you are not suffering from TN. Please be something simple and after treatment all the symptoms be gone forever. Blessings....
I had an MRI with contrast. Is there something different?
Kc Dancer Kc said:
Have you had a special MRI to rule out compression?
Not all MRI is created equal. Your best chances of confirming a vascular compression is with sub-millimeter MRI done with and without contrast agent, under a FIESTA procedure -- sometimes called a "Trigeminal Protocol". Not all MRI centers do this procedure, and not all insurance companies are willing to pay for it. Even with this procedure, a substantial number of people who have no detectable vascular compression in MRI imagery, will have one found during the exploratory phase of an MVD.
Laura, if your pain is constant and at a low level, and if it responds to anti-inflammatory meds like Tylenol, then there is reason to suspect that whatever is going on may not be trigeminal neuralgia. One of the candidates that need to be evaluated for when the pain is primarily in an eye socket, would be an arterio-vascular malformation (AVM) behind the eye but not in close proximity to the optic nerve. I would expect your neuro to have positively eliminated that possibility. Have you discussed anything like this?
Regards and best,
R.A."Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
I replied to your other post saying mine started with pain behind my eye and on a specific spot on my eyebrow. This went on for many many months then the pain moved to my cheek. I took 2 rounds of antibiotics thinking it was a sinus infection. The pain then migrated to my teeth and I went to the dentist twice saying I must have an infection, I didn't. When the pain went to my jaw I panicked and visited the ER thinking I was having a stroke or heart attack.
My GP kept saying trigeminal neuralgia and sent me to a neurologist who diagnosed me with "trigeminal nerve irritation" and prescribed Tegretol. I too did not want to take this drug but after unrelenting pain I broke down, took it and got relief. I quit it after a month as the pain went away. It has now returned.
I have never had shocks nor can I identify triggers. I recall thinking mine wasn't as severe as some experience and I still feel that way.
In your research does this sound like what you experience? As "Red" stated above, constant pain responding to anti-inflammatories are not typical for TN.
I had very similar thoughts when I was first diagnosed and read up on TN. I thought there was no way I had this, because I didn't have the "worse pain known to man" or any of the other wiki definitions out there. My "pain" was more of a nuisance type tingling / numbness around my lower eye socket / nose area (v2). My face almost felt like silly putty if it was touched - my skin had memory of the touch - I could feel where it had been touched for minutes or even hours.
It gradually became worse and I gradually needed higher and higher doses of Tegretol.
Its now evolved into something else and I am on different meds - but YES I had a similar start to what you describe.
I hope what you have is something else that is more manageable, but if it is TN we are all here for you and to share our experiences.
Elaine
Elaine, at first you probably had one of the precursor symptoms of TN -- parasthesia. Many TN patients report having experienced such sensations before the full-blown pain of the disorder sets in.
Regards, Red
Thank you all for your replies and information. It's very helpful.
Red, I'm not sure it's the anti-inflammatory effect of the Tylenol 3 as much as the codeine that helps the pain. Regular Advil does nothing even at 800mg per dose. The Tylenol 3 doesn't completely kill the pain but it makes it more tolerable. It also puts me to sleep.
Nancy and Elaine, this sounds very much like what I've gone through. My pain isn't constant. It comes and goes like a very sharp toothache that lasts for a couple seconds then goes away. This happens 3-10 times in a few moments time then goes away for a few hours. Then it starts all over again.
In the past few days the right side of my face has started to feel weird, for lack of a better way to describe it. It seems more sensitive to touch than the left side of my face. I’ve occasionally had it go numb right around my temple. When I have a bad headache my right eyelid will droop although that has gone on for years.
Nancy and Elaine, I’m sorry for your pain. However, I’m really glad to know that there are others who have experienced the same thing.
Red, than you for your insight.
Hi Laura, I'm from Corvallis OR and saw Dr. Burchiel at OHSU. When my pain first started, it wasn't horrible, but in the cheek bone area and upper molars for about a month, then it suddenly disapeared only to return full force a couple months later, also behind my eye and the roots of my hair, oh and that weird feeling that someone is drawing a line down the side of my nose repetivly. It got to the point I didn't want to open mouth, eat, go outside. The only thing that completely took the pain away was sleep. It took a couple of years before I couldn't tolerate/ function with the medications I was on and was referred to Dr, Burchiel for a MVD. In the early stages of my disease, I kept thinking it was in my head, I had so many negative tests and Dr,/dentist visits. Invaribly it wouldn't hurt during my appointment. Now, 3 years after MVD I still have some pain, but nothing compared to what I went thru.
I'm terrible at using this site, but I'll try to help if I can and if you need or want to call or email I'll share my info., since we're in the same state. There are some great books out there, read all you can. Take care, Kelly
Same here. What the heck. It's like the pain is thinking, "well, if I'm not here when they're looking I won't get caught. WooHoo...I'm so going to do my little ice pick in the eye about a hour after she gets home. I'm puttin' it on my calendar." I think pain may just be a jerk.
kg said:
Invaribly it wouldn't hurt during my appointment.
So, here I am 16 months later. What change that amount of time can bring.
My TN pain is no longer just a nuisance. It's a real problem. The pain has gotten worse over time and has created some real struggles for me. Right now, I'm on a lot of medication so everything is bearable pain wise. It's not gone completely but I can deal with it.
However, the side effects from the medication have become an issue. I don't feel foggy but I struggle to put sentences together and to find the proper words. Sometimes I can't even think of a synonym for the word I want. It's just not there, like there's a hole in my brain. My vision is blurry. My short term memory is shot. I lost my job in August and I believe it's directly linked to the side effects from the drugs. It's hard to make sure the numbers balance if you can't see them and have forgotten what you were looking for in the first place.
I have an appointment with my neuro on the 21st. I want to see what else we can do. MRI showed no compression so I'm not sure what - if any - surgical options might be on offer. I'm just tired of being impaired.