Posted , 8 users are following.
I have been having intermittent shock/stabbing/burning pain in my forehead and eye area..sometimes a little bit of my nose. I went to a neurologist and he says it can't be TN because it is usually in other branches of the nerve and has triggers ( I have no triggers at this point). Does anyone else have only V1 pain? Can this be TN?
1 like, 16 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
lee12629 stayc01
Posted
jennymb stayc01
Posted
I do hope your GP has prescribed you with someting (usually Tegretol) to keep it under control.
stayc01 jennymb
Posted
Thank you so, so much jennymb for responding. I haven't been able to find anyone else with v1 pain only either. I guess it is rare but does exist. Some of the websites that talk about TN say that v1 pain isn't thought to be true TN..then what the heck is it? It sure feels like what Tn is described to be. My neurologist says it is an ice pick headache. But that doesn't seem to fit. This pain is electrical, and in all the areas of the v1 branch.
I hope you don't mind but I wanted to ask you some questions. Is your pain constant or does it come and go? My pain has been very intermittent so far. I have a few shocks then it disappears for a month. Then it comes back for a day..then disappears again. Right now I am having an occasional 1 second stab in one specific spot in my forehead when I swallow..(but only about 15-20 times per day) How long have you had TN? I am very scared to take Tegretol or any seizure meds because of the side effects. I am super sensitive to meds. I guess if it gets really bad I will want to take it. Thanks so much for your time..I am feeling so alone in this.
jennymb stayc01
Posted
Hi again, I first had the electrical shock pains in my left eye about 2013 and was prescribed tegretol 400mg daily but still get getting shocks - every time I moved - it was hell. Anyway my GP said to take another 200mg and hey presto. Maybe just lucky (I sure hope so) but over this time I have decreased to 200mg per day and pray that it keeps it at bay.
Try the Tegretol please - side effects surely can't be as bad as what I know you are going through.
Be strong x
stayc01 jennymb
Posted
stayc01 jennymb
Posted
susan33651 stayc01
Posted
Hi,
I have had pain including stabbing in my eyes and pain down my nose and burning pain over the tops of my teeth for about 14 years. In addition to this I also have experienced pain (stabbing and electric shocks) across my eyebrows, my cheeks, behind and in my ears. My GP and Neurologist have both diagnosed Bilateral TN involving all three branches of the nerve. It was only in the last few years that it became so bad that I sought help, mainly after the shocks started and the pain spread to other parts of my face on both sides. It was my left eye that had pain first, so yes it can start with the eye and the forehead!
When it first started I thought it was a variation of migraine and when it spread I put it down to the various sinus and ear infections and head injuries over the years. After it got so painful that nothing touched it including Tramadol and morphine plus the cattle prod level of shocks I knew I needed help. From the way the pain worsened and the fact that such strong painkillers did nothing to alleviate the pain the diagnosis a no brainer.
I take Amitriptyline 50mg at night with an extra 20mg if I get a bad attack, Carbamazepine 1100mg in split doses throughout the day and to manage the pain in a bad attack I have Oramorph, Cocodamol, Tramadol and Ibuprofen plus a 'volcanically hot' hot water bottle against my face. More often than not that combination only dulls the pain.
My triggers range from cold breeze, eating, talking touching a specific spot to simply sneezing. It really is B stard of a condition!
Jewell susan33651
Posted
That's no way to live. Have you considered the MVD surgery? I just had it three weeks ago. No more pain! My heart goes out to you.
stayc01 susan33651
Posted
susan33651 stayc01
Posted
Hi, to both of you,
Up until the last week or so the TN was relatively under control, but with the weather being so hot and muggy there are fans everywhere and I am constantly in the path of the breeze they produce. Frankly, it's been a really crappy two weeks. I had an MRI a couple of years ago when I was having Investigations for an inner ear problem, but everything was declared normal with no hint of any other issues. I am going to ask for a scan with contrast though, as it may be that any compression is likely to be more prominent now (???). To be honest, though, there's likely to be more of a connection to the autoimmune disease than anything else. I take each day as it comes and deal with the pain, whether from the TN or my joints, as best I can.
Mental hugs to all.
esther48415 susan33651
Posted
Ask for a HIGH RESOLUTION MRI both sides with and without contrast. That is the standard for finding TM- the first MRI, the general brain type is to help rule out other causes that would appear such as a tumor or MS lesions.
With a high resolution the Dr. should be able to compare r to l where the Trigeminal nerve exits the brainstem and while not seeing a blockage is not necessarily definative, sometime at that juncture the blockage can be clearly seen, particuarly in 'Classic' TN. Good luck.
susan33651 esther48415
Posted
I do plan to ask for both types of scan. I will keep everyone posted.
X
shadre stayc01
Posted
I have had TN for 4+ years. It started in the forehead, then moved to the cheek area, then to the side of my nose and eye. When first diagnosed my MD put me on Epitol and ordered an MRI to rule out a brain tumor. As the pain progressed he added gabapentin. He sent me to a neuraligist and he confirmed the diagnosis. My MD couldn't really explain much about it, and the neuraligist was even worse. Then I requested going to the Cleveland Clinic. There they confirmed my MD's diagnosis. I dropped the neuroligist because all he was doing was renewing my prescriptions and ordering a blood test every six moths. I figured my MD could do that if there was nothing else available. My pain goes away for a while (sometimes up to a year) and then returns with a vengenance. Always in a different area, and always worse than before. The last exploding attack I had was the day after Christmas and the following day. Worst ever. Like electrical shocks up the side of my nose and into my eye. I had read about treatment my an NUCCA chiropractor in my researach on the internet, and had found one near me. I called and he got me in the next day. His thinking is that the vertebraes in the neck are out of place and irritating the geminal nerve. I have been going to him now for 6 months, and everything is better. But whether he is helping, or whether I just in one of those reimission periods, I don't know. But for now I am pain free.
I had gone back to the Cleveland Clinic shortly before this attack, and all they will discuss is brain surgery. I am definitly against that, if there is any other way to help it. There is cyberknife treatment that can help. I haven't researched that a lot yet.
I have also read about LLLT - Low Level Lazer Therapy. But the closest place I have found for that treatment is in Myrtle Beach, NC (I am in Ohio). The treatment is approved by the FDA, but insurance won't cover it. And the cost there was approximately $6,000. Plus the expense of staying there for two weeks as it is a two week treatment. Thus - my trying this NUCCA first.
As to the medicines, the Epitol or carbamazepine - I am on 800 mg a day (and can't take any more for damage to liver) and 1200mg gabapentin a day. The side affects I have had came from the carbamazepine (which I was given first) and those are a problem with balance, and putting on weight. Adding the gabapentin didn't seem to add to the problems.
I am wondering if there is anyone ot there who has heard of the LLLT, and has anyone tried it? It will be my next thing to try if necessary.
Jewell shadre
Posted
Find a reputable neurosurgeon and go for the surgery. I did and the pain is gone. Don't let the term "brain surgery" scare you.
Good luck and God bless!
Jewell
esther48415 stayc01
Posted
The Effectiveness and Safety of Thermocoagulation Radiofrequency Treatment of the Ophthalmic Division (V1) and/or Maxillary (V2) and Mandibular (V3) Division in Idiopathic Trigeminal Neuralgia: An Observational Study.Huang Q1, Liu X1, Chen J1, Bao C1, Liu D1, Fang Z1, Liang X1, Lu Z1, Wan L1.Author information
Abstract
BACKGROUND:
Trigeminal neuralgia (TN) is a pain appearing in the ophthalmic (V1), maxillary (V2), and mandibular (V3) trigeminal branches. Pharmacologic treatment is the first line for TN; however, many patients prefer to receive minimally invasive treatment rather than medicine because of intolerable side effects. Thermocoagulation radiofrequency (TRF) is a minimally invasive treatment that has been shown to effectively treat the maxillary (V2) and mandibular (V3) divisions, but the safety of TRF treatment of the ophthalmic (V1) division has been controversial.
OBJECTIVE:
This study was to observe the effectiveness and safety of TRF treatment of the ophthalmic (V1) division of trigeminal branches in idiopathic TN patients.
STUDY DESIGN:
An observational study.