Do I have Trigeminal Neuralgia

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Without going through the last 6 weeks of hell, let me be brief to see if anyone can help me.  I've had head and face pain so severe I'm not sure how much more I can take.  My last contact with a doctor was an ENT that stopped me when I was trying to explain my symptoms, and said he believed I had Trigeminal Neuralgia.  He sent me home with Gabapentin, and said he would get me in to see a Neurologist.  My appointmen isn't until Dec 15th.  I was told to take one 100 MG pill three times a day.  I thought this was it!  I went for 3 days with no pains.  Then in the early morning hours I woke up with the pain back.  Usually my pain is 10++++++.  This morning it was about 8-9.  I did not get the burning, searing pain in the top of my head this time.  It was confined to my forehead, eye, teeth, and an ache near my ear.  I took 2 Gabapentin, and a pain pill I was given at the ER at an earlier visit.  The pain lasted for about 2 hours.  I woke at 6 am with a dull ache near my ear.  A feeling of pressure.  Since I could not take anymore Gabapentin that soon, I stayed in bed till 7:30, and then I took 2 more Gabapentin, and 2 Excedrin migraine pills.  Within one hour, I was pain free.  Is it okay for me to up my dosage without the doctor saying it's okay?  Does what I have sound like Trigeminal Neuralgia?  My pain covers my front teeth on the left, inside my nose, under my eye, in my eye, over my eye, and into my forehead.  Then I have these streaking pains that run back and forth very quickly from front to back on top of my head.  It's either very, very hot, or very, very cold.  To me, it's like a pinball machine that slings the ball back and forth, back and forth.  And the pain is severe!  I have pains in the roof of my mouth, that lead up to my eye.  I'm embarrassed to say this because I've never seen this written anywhere else, but I get this strange smell in my nose when this happens,  Now, I'll probably be taken as a crackpot, but that's just the way it is,  My pains are so severe, everytime I have one of these attacks, I pray that it will be the last one,  I beg...please Lord, don't let me go through this again!  I'm not sure I can keep going through this.  Can anybody relate to what I've said?  Does this sound like Trigeminal Neuralgia?  Am I putting myself in danger by increasing Gabperntin?  I know most people take a lot more  than this, but am I doing it too soon?  I'd take the whole bottle before going through another attack!  Thank you for any information you can give me.  

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  • Posted

    hmmm i don't know about the pain streaking back n forth ove the top of your head which you describe very well,i can totally see what you meant in my mind. as far as the facial pain that could indeed be tn but the thing that concerns me and i'm glad you mentioned it here is the phantom smell you get. have tou mentioned this to any dr before? if not i would mention this first because you and i know dr's they listen to us for like 20 seconds and take over the conversation. here's some info i found on phantom smells ...What could cause phantom smells?

    There are a wide range of possible causes of phantosmia, which include:

    nasal infection – some people start to perceive a smell after they develop an infection that affects their nose or sinuses (read about sinusitis). The smell may become noticeable after a sudden change in airflow through their nose – for example, just after they've sneezed. It usually goes away when the infection clears

    nasal polyps, which are abnormal tissue growths that form inside the nasal passages and sinuses (read more about nasal polyps)

    migraine with aura – some people smell phantom odours just before or during a migraine (read more about migraines)

    dental problems

    smoking

    exposure to certain chemicals such as insecticides or solvents

    radiation for treatment of head and neck cancer

    Neurological (nervous system) conditions

    Less commonly, the cause of phantosmia is either nerve cells sending abnormal smell signals to the brain, or a problem with the brain itself.

    This may be the result of:

    a disease affecting the nervous system, such as epilepsy, Parkinson’s disease or Alzheimer’s disease

    a stroke

    a head injury

    cancer – usually a brain tumour or neuroblastoma (a rare cancer that may start in the olfactory nerve)

    i wouldn't increase your medicine without consulting your dr first!

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    • Posted

      Thank you for responding to me!  Yes, doctors won't listen for very long.  I've had dental xrays, I had a CT scan at the ER that showed nothing.  I took a strong antibiotic for 2 weeks that made me sick on my stomach, but I took them anyway...every single one of them!  The ER thought I could have a sinus infection.  The ENT said I did not have an infection, but is sending me for a sinus scan next week, just to be on the safe.  I've been to the ER 4 times in the last 2 weeks.  Two times I had the migraine IV that lasted for 4 days, or it could be that I was just having a pain-free time.  The second time it didn't last the 3 days they claim it will last.  The last time I asked for "the shot" because you could go home right afterwards.  It did nothing for me.  I went home and had another massive attack, with another one the very next day.  This smell came about just before I went to the ER for the first time.  My headaches started on October 28th, and just got worse, and worse.  I would like to call someone and ask about taking this much medication, but who would I call on the weekend?  The information about smells is interesting.  I guess I'll know more about what I can do after I have the sinus scan next week.  Honestly, I was hoping the ENT was right, and medication would stop these attacks.  I'm at the end of my rope!  Thank you for all the info.  I'll read it all and hope to see if it can pinpoint what I have! 

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    • Posted

      I started taking gabapentin at 300 mg 3times a day im still on that plus i take oxcarbazpine 100 mg once a day for trigeminal neuropathy which I got from an ear infection that caused everything I'm cursed with the pain can be very painful i wouldn't be able to cope with but right now im doing great my pain is very low mostly around a 2 or 3 sometimes a 4 but usually very tame

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    • Posted

      Tnhurtsme,

      Pain in teeth with shocks and made dental surgeon pull a good tooth, nothing with gums until shocks and tooth was bothering me, I don't believe it has to do with tooth.

      I did have meds to fight H.polari disease and then my ovaries removed, i really never took meds and all of those meds I was allergic to and I told my doctors.

      The wierdest thing is that after my otoscopic ovaries removal in still have a nerve pain bcause my doctor sutured my scare up on my nerve and when I wear pants or my undirs on it it is very painful..

      I had a surgeon remove my Obgyns scar tissue but it still is painful, no TN until endoscopy/ovary surgery,

      I really would like to know if there is a connection, my Obgyn says there is nothing more she can do and that I will just have to suffer with it and that maybe it will stop being painful.

      How abou our doctors.

      God bless

      us and keep us and give us peace

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  • Posted

    Hi Sandy

    You seem to be in pain due to a number of factors and clearly need the advice of your neurologist. In the meantime, your regime for taking gabapentin needs monitoring by your GP. The dosage of gabapentin you're taking is still moderate and you could take more BUT you should do this with the involvement of your GP or local pharmacist. The key thing with gabapentin is to build up the dosage slowly and come off it slowly - no sudden changes. It's a good drug but don't treat it like it's an indigestion remedy - it's acting on your nervous system!! Good luck. Colin 

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  • Posted

    I take 900 mg of Gabapentin a day.  I believe that is the maximum.  You have to build up to it slowly.  My neurologist told me to increase the dosage by 300 mg every 3 days.
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    • Posted

      Oops, I don't know how to edit a post.  I meant that I take 900 mg three times a day.  I started by taking 300 and increased that by 300 mg three times a day.  I would increase every 3 days, so built up slowly to 900 mg three times a day and am now at the daily maximum.

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    • Posted

      Patyrod,

      I take 900mg Gabby plus 150 Oxcarbinazapine, @ bedtime and if my house catches on fire that would b my end , once I take the lot I am out cold.

      If any pain in day will just take them and want take @ bedtime, if stresses will go to 1200, bu I have already asked my doctor and he said I could adjust.

      My pharmacist told me a woman takes 1800mg alone with the Oxcarbanazipine.

      ask doctor b4 increasing or ask ur nurse.

      God bless

      us and keep us and give us peace

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    • Posted

      I can only imagine taking that much, lol!  One 100 MG was making me loopy, now I'm taking 200 but not much difference to me.  I spoke to my pharmacist and she said I was perfectly okay taking the 200 at one time.  She knew exactly what TN is, and was so helpful!  I've been to the ER 4 times, and nobody ever suspected this as my problem.  I was told it was a sinus infection, migraines, and cluster headaches.  Is this condition that rare?  Thank you for responding to me!

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    • Posted

      Sandy 522-1948,

      I wonder what a doctor would give you Gabby to be used for a sinus infection.

      It with my neurologist you told me that I had TN and he is the one who told me that I had and then he forwarded the MRI to the neurosurgeon someone he knew,

      After getting my MRI' from my neurologist my surgeon then used my neurologist MRI'.

      I don't have sinus infection but my oldest son does and he's had it since he was a little boy and he has never been giving Gabby.

      I had never heard of gabapentin and Ic Ocarbanazapine until I had TN. Looks as if li the doctors in the ER R smarter than the doctors that are not in the ER.

      God bless

      us and keep us and give us peace

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    • Posted

      No no!  The ER doctors diagnosed me with a sinus infection.  That was the first time I went,  Then next 3 times they said migraines and cluster headaches.  When I went to the Ear Nose and Throat doctor, he's the one that said I did not have sinus problems, that I had TN.  And he's the one that gave me the Gabapintin.......thank God!

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    • Posted

      Sandy5221948

      Make sure you have your appointment with the neurologist and make sure he gives you all the options and if he sends you to a neurosurgeon make sure you see more than one.

      The neurologist should tell you about other options besides MVD surgery for TN.

      Then schedule appointment with different neurologist at different hospitals and ask them to tell u about other options besides MVD surgery.

      Be sure to look on YouTube there is a minimal invasive MVD surgery that do not open up your brain.

      God bless

      us and keep us and give us peace

      P,s. go back and read some old post and t other people on this forum

      talk about gamma knife and different other procedures

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    • Posted

      I think he started me out on too little to control my pain.  I was only taking 100MG 3 times a day.  Since I've increased it to two 100 MG pills 3 times a day, I think it's under control.  It's only been since Saturday night/Sunday morning, so it's too soon to know.  I'm just hoping this thing stays away for ever.  I know that's not likely, but I'm praying for it!

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  • Posted

    Sandy5221948,

    First, of all u need to see the Neurologist in a few days so he can make a diagnosis to see if u have TN.

    This dreadful disease doesn't have and age limit to it. The neurologist will send u to a Neurosurgeon, of course the Neurosurgeon will twll u that the best option is MVD surgery, u get ur family or friends to go with u on these visits and ask that Neurologist and that Neurosurgeon if there r other procedures that r none invasive other than MVD.

    If both doctors talk about only one procedure get the heck out of their offices and let that door it u, run, run and with friends/family in tow get a second, third, fourth and even a5th/ sixth opinion b4 u let any of those doctors cut into ur head.

    I had the very invasive form of MVD surgery, and have found that their is an orthoscopic on that can be done it caan b found on Youtube.

    Make u read more about other procedures on this forum and any where u can research info on TN. And b sure to ask that person who will b doing any procedure to ur head how many of these procedures he personally have performed.

    Once these doctors have done their procedures the tell u that u r released from their care and then they will teell u to have a follow with ur primary care physician, who don't know y the surgeon want them to fix a problem that ur surgeon is responsible for.

    My surgery was on July 27, 2016 was in hospital ICU for 4 1/2 days then in private room until August

    8, 2016, Had not had bm but was told that I couldn't wait to get home, my hubby finally got my Surgeon to talk with him six days after I was in hospital.

    Get this my surgeon already had me scheduled to go to a nursing home without my hubby or my knowledge and he instead of making a date for Jim Thorp rehab, my surgeon wa fast forward ing to nursing home, my insurance thought that was what I wanted according to the surgeon who didn't want to let me have therapy, that man just wanted me out of his hair.

    If you get a doctor who has a P.A., get out of that place as if u have the flu, with that P.A., u will never see ur surgeon,

    I have double , horizonal, vertical, and 3d vision in both eyes. My eyes r getting a bit better that is the reason I can seebecause I can see straight a head now.

    I have a new Neurologist( Dr. Webb, on staff @ OU Physicians Hospital he is going to get me into a real Therapy bcause my I still get muscle spasm in my neck, well my surgeon never talked about any therapy just nursing home, after the fact, I walk 12,000 steps a day, I ned therapy now on my neck

    I have a home y would I need to go to a nursing home were they do no form of therapy to my spasm at ic neck.

    Dr. Webb is scheduling therapy for my spasm in my neck, and guess what? I never asked for it he just listened to me talk and asked me why my surgeon had not had me scheduled for it, I explained what went on with this nursing home mess.

    Also, i found out that their is a blood test that can b done to confirm if a person has had a stroke, my surgeons he say not, it was my neurologist who says I must have had one bcause of my double vision. My Surgeon even had it written in his notes with that no MRI, he said came back negative fir a stroke.

    Neurosurgeon never did a MzRI on me after surgery all that was done by my neurologist and ER doctors.

    My surgeon just wrote anything in his notes about me.

    My whole point is that u need to go to different hospitals and see other doctors b4 u let anyone mess with ur head.

    God bless

    us and keep us and give us peace

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    • Posted

      "If you get a doctor who has a P.A., get out of that place as if u have the flu, with that P.A., u will never see ur surgeon"

      this is not true whatsoever,  I had surgey done for something completely different and after surgery I had follow ups with my surgeon, not my gp (who happens to be a wonderful p.a)

       

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    • Posted

      Andraste,

      Practical Assistant, run don't walk, I am not referring to regular doctors I am talking about Neurosurgeons who use P.A., instead of the surgeon coming in to inform the patient and the family about what is ging on.

      My family requested to see my Neurosurgeon after my surgery and Neurosurgeon kept sending in his P.A.

      My hubby said I want to talk to doctor who did surgery on my wife not u.

      My family and friends were with me all day and slept in room with me at nite time, nurses said doc was on floir knowing my family wanted to know why he was giving updates to my hubby, he kept sending in his P.A.

      I am talking about Neurologist who does TN aka MVD surgery

      God bless

      us and keep us and give us peace

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    • Posted

      OMG!  I"ve been through so much pain, I would have begged him to do any surgery that would help me.  You have certainly changed my mind about that!  Thank you for sharing with me.  I will not agree to anything without more opinions.  God bless you!  I'll be saying prayers for you.  

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    • Posted

      ok, i think we mean the same things but are using different vernacular. i ;ove in the usa and dr's here sometimes have a physician's assistant who must rport to a dr. a d  can also use a nurse in this fashion tho her term is not p.a.

      i know of no position here in the usa that use a practical assistant?

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    • Posted

      Andraste,

      I and my hubby did this and it took from July 27, 2016 until sux days of being in hospital.

      I hubby cornered my MVD surgeon so that he could not get away from him, a nurse rold my hubby who had been calling the surgeons office and leaving messages for surgeons to come to see me in hospital all the while surgeon was going into other patients room trying to avoid my hubby.

      He wanted the surgeon to tell him y did he cut my muscle in my neck, heck I wanted to know, would still not know had it not been fir his P.A. telling us.

      My Neurologist did not even know the surgery was done he wanted to b there.

      Read my old post, my surgeon damaged my nerves call a optomologist and tried to get her to say he was not even near my eye nerves.

      My surgeon said he did NRI in me in hispital, was done after I keft hospital by ER attending / My Neurologist.

      December 1, 2026 went to see new OU (oklahome) neurologist and he said only written notes by neurosurgeon said I had a stroke, no one can definately tell me I had a stroke no my surgeon, he says who told u that, not him yet, he wrote it in his notes seems it was onMRI he never did in hospital.

      My new Neurologist said a bloid test will shoe if I had a stroke, bcause he can't find the Surgeons MRI and neither can hospital.

      God bless

      us and keep us and give us peace

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    • Posted

      What a load of crap!  You need to sue somebody!  My brother had a valve replaced in his heart, and was given bad meds.  They should have known better because there were alerts out there saying not to use it again if it had been used in the last 3 months.  Anyhow, my brother's body was showered in blood clots, and he lost both legs. He sued, and won!  

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    • Posted

      Sandy 5221948,

      I have not figured out how to get it yet I also I'm not typing I am texting my talking because of the double horizontal vertical and 3D Vision.

      I was reading over my post and I noticed that I put December 1, 2026, it is December 1,2016.

      God bless

      us and keep us and give us peace

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