Trigeminal neuralgia? Help! I'm desperate!

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I am in so much pain and don't know what to do. Second night in a row of not getting a bit of sleep because my pain is so bad, although tonight is much worse. Quick back story - I've had numb twinges/small shock like feelings in my face on my left side for 5 months along with painful points down my left neck. These symptoms would come and go but weren't intense enough to be debilitating. On top of that, I had a very sentitive tooth (receding gum) that was bothering me. I went to the dentist and found out I needed a root canal in the tooth in front of the receding gum tooth. Aparently the root infection was pretty bad - he spent "extra" time bleeching the heck out of it. Since the root canal my pain symptoms have seemed to come on more frequently. also, about four months ago I was also diagnosed with reoccuring mono by my GP from my bloodwork. Tooth pain has persisted, I was convinced there was a lingering infection but x rays by my dentist and a second opinion from an endodontist show no infection, but the tooth and the tooth behind it still hurt! This is when my dentist first told me about Trigminal Neuralgia. Last week I went back into my GP and told him about all theee symptoms, including increasing facial, neck and ear pain. He thought I might have Trigeminal neuralgia caused by the herpes virus living in my nerves and attacking them (I get cold sores from time to time but only one here and there so I wasn't sure about this, but just happy to have some kind of an answer). So he prescribed me an antiviral drug to start taking. Then, two nights ago the pain got significantly worse. Everything was flaring up all at once. It all seems to be spurred on by the tooth pain. All day yesterday was bad. Flair ups all day. Then toward the night it got to the point of unbearable (I have twin one year olds and a six and eight year old and my husband works long hours, so yesterday was awful just trying to survive and take care of my babies through this pain). Around 9:00 my ear pain/tooth pain/face pain/neck pain has gotten so bad I wanted to seriously take a needle or knife to my face (obviously wouldn't, but I thought it might help!!) I decided there must be something more going on (why the terrible flair up??) so I rushed to the instacare, wondering if I have an ear infection or something exacerbating the problem. The doctor said there was a little fluid in my ear and told me to take a decongestant. Ugh! But I was hopeful the decongestant would help. The pain had subsided for awhile now so I was also hopeful the awful flair up has gone down. I got home, was feeling pretty good, then brushed my teeth before bed. I'm pretty sure the brushing is what set me off. Now it's 2:00 and since about 10:00 (four hours) I have been having Trigeminal neuralgia attacks every 5-10 minutes! Some have been so bad I've been in tears rocking back and forth, and through all I've been through with my twin pregnancy my OB said he thought I had a very high pain tolerance. I have never felt pain like this. It is radiating through my entire left side of my face/upper teeth/ear/neck. I am miserable. Is there any kind of home remedy I can do to help? Tylonnel isn't touching it. I realized I have some Oxycodon left over from my c section I might try in about an hour once it's been four hours for the tylonnel. I'm going to call my GP first thing in the morning, but I am so miserable. No sleep for two nights in a row, plus I really haven't slept well for a month or so because of all this pain on and off. I've been searching around online for ideas and found this message board and was so happy to find somewhere i could talk to other sufferers! What can I do? What medication should I start with? Also, I've seen online that Botox can help myofascial pain. Has anyone done Botox for Trigeminal with success? I'm desperate!! I'm so sad because my older kids have a school talent show tomorrow night they are so excited about but I have no idea how I'll go with this pain. I'm so sorry I'm rambling. Just so distraught and frustrated. Please send any ideas for pain relief or medication suggestions I can bring up to my GP tomorrow. Thank you.

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9 Replies

  • Posted

    Lindsay,

    That sounds terrible.  I would ask your GP for a weeks worth of Tegretol. If that provides relief I think it likely he will conclude it is Trigeminal Neuralgia. Good news the drug should work very quickly and you'll have an answer.

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  • Posted

    Yes, you need to get some TN medication right away!  Go into Emergency and get something for TN immediately.  It has to be not just for an infection (that won't work).  Dentist procedures make the pain worse and you probably did not need them either.  I had two root canals that were unncessary before I got diagnosed with TN.  Please let us know how you are doing.  Good luck!
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  • Posted

    That sounds awful. Like the others said you need some medication that numbs the nerve pain, tegretol or carbemazipan. You might find that a low dose of that takes the pain away.

    I can imagine that life is hectic, they say that stress makes TN worse, perhaps the pain of the teeth has set it off? My Dad couldn't brush his teeth he was in so much pain. (He's had gamma knife surgery (not as bad as it sounds) and is now clear of pain for 3 months!)

    Read up as much as you can about TN, different things work for different people. I have read that for some cold compress on the area can help, for others heat helps.

    Then get an MRI to confirm that it is TN.

    Good luck, I hope it goes into remission soon. there are some lovely people on this forum that give great advice x

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  • Posted

    so sorry, i can feel ur pain , i have been diagnosed with trigeminal neuropathy on my left side of my face, and trigeminal neuralgia on my right side !!!

    it is Terrible sad

    i had five root canal treatments for my molars, premolars and my front upper tooth, i decided to extract them beacuse the pain was worse,i thought the pain was caused by faild RCT .

    after one month of the extrations, the pain returned back !, not knowing it was trigeminal !

    i have done a lot of research and my symptoms was something i'd never heard about ! its "TN" , then i decided to see a Neurologist in US, he explained me the differnce between TN1 and TN2 and he puts me on Neurontin and Tegretol , i feel better 7/10 now !

    the bad News is we have to live rest of our lives with trigemanl neuralgia cause there is no cure for this painfull illness !

    get well soon.

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  • Posted

    Lindsay,

    Is this new to you? Sounds like TN so GP is the wrong kind of doctor. You need an appointment with a neurologist asap. The GP might refer you. That may take some time. In that case, you can go to the emergency room to get appropriate medication short term. I did that in 2007. They gave me Carbamazepine. A God send ! It still works well for me. The right doctor will figure that out for you.

    eddie13

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  • Posted

    Two suggestions: Firstly, I can't imagine why your doctor did not immediately set up an appointment with a Neurologist after making his quess-diagnosis that it was caused by the herpes virus (it's not always that which causes Tn). Two, if he either does so but it's not an immediate appointment or if he will not do this for you, go straight away to an Emergency Department of your closest hospital and tell hem of the excruciating pain you are in, THAT YOUR DOCTOR SUSPECTS TRIGEMINAL NEURALGIA but has only given you an anti viral and cry for help. They will react immediately and give you help. Don;t be shy in asking your doctor for a neuro appointment and don't be shy about going to emergency either. You have an incredibly painful condition and it should have been addressed correctly in the first place. Should your doctor agree to give you a neurologist appointment which is not right away but you feel too intimidated to go to Emergency Departments, it is imperative that you insist that your doctor gives you a script for Tegretol and that you get that script filled and start taking it straight away. The usual starting dose when Tn is suspected in 200mg twice a day. Please try to take a support person to the doctor's appointment. This is very helpful, especially if that person is a man. (unfair, i know) Take that person to the neurologist or the Emergency Department as well if you can. You need help and you need support right away.
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  • Posted

    Lindsay, you have a textbookcase of TN. I have had it for 4 years. I have gone the route of Stereotactic Radiosurgery. It is where they aim a radiation beam at the center of the trigeminal nerve, and the machine arcs around the head delivering the radiation. It is a non-evasive procedure. However, it come with a price of side effects. They are as follows:  weakness of muscles in chewing, numbness on side that was done, pain on the side that was done, eye numbness, hearing loss, double vision at times, hoarsness, gait is off(balance), and difficulty swallowing. I was the one that got all the side effects with a 25% of patients will experience one or more of these.

    Now for the biggy. I had Micro-vascular Decompression done, which is very invasive. They cut a hole the size of a dime behind your ear and go into the skull where the nerve is at, to see if it is touching the blood vessel. If it is, then they put a teflon pad around the nerve (touching the nerve) to separate the two. If not, then they can masage the nerve to keep it from misfiring pain signals to the brain. Side effects are similar to the radiation one. Did not work for me, just got the double side effects of that procedure. So, go find a sympathetic Neurologist, and go the medication route, I take Lamotrigine 250mg ER once a day. It takes the edge off of it. Everybody's nerve system is different, so you have to play with different ones to find the one that works for you. All these procedures are on line for more information. I went to the Mayo clinic website.

    I hope this helped, and may God intervene and help you find the right answer.

    God Bless,

    Greg

     

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  • Posted

    Get to a neurologist immediately...and get on Tegredol immediately!  I can't imagine dealing with this pain with children (mine are grown now).  I've had this for about five years now.  The Tegredol worked well, for the most part, until I developed resistance to it.  I had the decompression surgery done, but it was not a hole.  It was an 8 inch cut behind my ear.  I didn't care, because the black cloud was lifted!  For four months!  Now it's back, and I'm going to try the gamma knife surgery.   And my neurologist has me on Vimpat in addition to the tegredol.  They are anti-convulsant drugs.  They do not make me sleepy or 'high'.  I'm also considering a mouth guard.  If there's a possibility that you clench your teeth when you're sleeping maybe that's something to consider.  Just guessing at that!

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  • Posted

    Hi you have some great people offering good advice and I would like to add a little to it. First get yourself to a GP or  Neurologist as you need some sleep to cope with the pain and to cope with your children. If you can get somebody to help with them that would be wonderful.   I was diagnosed about 11 years ago but a few years ago I was rediagnosed as SUNA.     I was put on Gabapentime and Tegretol when I was first diagnosed as TN.

    look on linn foe TN. U.K. Association and join it.   Buy a copy of a book called Striking Back.     Where do you live ?     If it's pain from your teeth making it worse you must have some painkillers in the house.   Get to A&E  if you are desperate and if poss take someone with you. If you can't get yourself there due to the intense pain call an ambulance and tell them you aren't safe to drive due to the pain.       Wake your Husband,  you need him.

    we all feel your pain with you.        Keep us up to date with what happens.

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