V1 Branch pain only

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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? 

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  • Posted

    Use google,its smarter then doctors!
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  • Posted

    Hi stayc01 - I had the same symptoms and as far as I know you are the only other person that has had this in their eye. Your GP is wrong - TRI means three and although most people have face/ jaw /ear pain (which is most common) the eye can also be affected. I had no triggers either, it just came out of the blue, so yes, it is TN.

    I do hope your GP has prescribed you with someting (usually Tegretol) to keep it under control. 

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    • 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. 

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    • 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

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    • Posted

      Thank you for your reply. Did you have any side effects to the Tegretol? I am a teacher so I guess I am afraid of not being able to work while taking it. I was thinking of asking for gabapentin as it seems to have less side effects. Thanks again for your help. I have had 6 stabs today so far from swallowing. Less than yesterday so hoping they are subsiding a bit.
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    • Posted

      Hi jennymb, I got a 2nd opinion from another neurologist and she agrees it is TN. I started gabapentin and the shocks have lessened but am still having a couple a day. I still have not been able to find anyone else with just V1 pain. I am just wondering if you have ever felt pain anywhere else or has it just stayed in the V1 branch? If the gabapentin does not work I will switch to Tegretol or Trileptal..still nervous about these meds as they seem to have lots of side effects. 

       

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  • 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!

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    • Posted

      Oh man susan, that sounds so awful. I am seriously terrified at this point that this may become my life. I hope you are able to find a surgery or something that will help you. My heart is breaking for you.
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    • 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.

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    • 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.

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  • 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.

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    • 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

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  • Posted

    I sent this not to advocate for a particular treatment but because of the definiting of TN which does include V1 branch only.

    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.

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