Anyone Have Trigemenial Neuralgia?

Discussion in 'disABILITIES Community Board' started by snarlingcoyote, Dec 7, 2012.

  1. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    I do; I'd never even heard of it before I found out I had it, and I've never met anyone else who had it. Well, I haven't met them when I've known they had it. Apparently there was a doctor's wife in my small hometown who had it, but, while she was a dear friend of my mother's, by the time I knew her she was an (understandably) reclusive person, so I only met her a few times.

    I've been on the TNA boards, but I feel so guilty afterwards - mine is pretty managable. I've discovered that if I eat ketogenically, I don't have pain problems unless one of two specific triggers for pain is involved. (I thought about talking to my doctor about seizure meds, which I hear can work - if this diet works, the meds would likely work, but as DH has pointed out, my diet doesn't have any side effects other than me whining about not being able to eat a donut or a yeast roll.)

    Anyway, I'm feeling very alone and very sorry for myself right now because I am going to have all my wisdom teeth out and I know I will be in for a week or two of horrible pain afterwards, even if I'm so far into ketosis that I have to watch that I'm not going into ketoacidosis. I'd just like to have some normal person say "yeah, I have it too and I manage, and yeah, it SUCKS big time."

    Anyone?

    Bueller?
     
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  3. phorsenuf

    phorsenuf Not so New Rule author

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    :wave:
    I deal with this as well. When I first developed it, it was excruciating. I get why they call it a suicide disease. Thankfully mine subsided but it still rears it's ugly head every now and then, but never as severe as when it first developed. I don't have an tips or tricks to share, it's just something I deal with, like so many other issues I have. I do take neurontin and that does seem to help keep it bay some. I think it's been about 5 years now since it has hit.

    Hope all goes well with the wisdom teeth. :hug:
     
  4. Buzzsgramma

    Buzzsgramma DIS Veteran

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    I too have it...my mother also had it.....i notice that if the pain starts sometimes if i take an Allegra that helps...
    i have also taken Nuerontin and that works well and i have no side effects from the meds.
    It is suppose to be the most severe of any pain..i have read there is surgery to deaden the nerve but it is quite extensive ....
     
  5. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    Hi ya'll! I'm sorry this is so late. . .I thought my thread had fallen off the face of the map and didn't check back again :-).

    My dentist has several patients with TN, so he sent me to an oral surgeon who's operated on many people with TN. Oral surgeon said he would numb my face from nose to neck - which he did - and would be exceedingly careful when working to avoid touching any nerves.

    I had an easy time, pretty much. Today is the first day the TN has kicked up and bothered me, but I ate carbs Friday and Saturday night, so it's my own fault.

    People kept asking me didn't I hurt and telling me their horror stories at work all week. . .I'm like, yeah, it hurts, but not bad enough to cry or take enough hydrocodone to knock myself out, sooooo. . .here I am at work, big deal. I think my pain threshold is completely different than what it used to be and different from most people's now!

    Do ya'll have the face heating pads? I have two; one has the digital display, so I have to reset it every so often. The other has the thumb switch - I used duck tape so I don't have to hold it. I didn't know they existed until recently, but I love mine. The surgeon also gave me a face ice pack wrap, which I had never seen. OH MY! I am in love. Wrap that sucker around my face and good times!
     
  6. Earstou

    Earstou <font color=336699>The Tag Fairy sends you pixie d

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    My sister AND my husband have just recently been diagnosed with it. Both were given the anti-seizure meds right away.
    My dh is doing so much better, no pain, but the meds make him sleepy. I told him to tell his boss, so that he doesn't get in trouble if the boss walks in his office and finds him asleep! :faint:
    My sister ended up in the hospital due to side effects with the meds, dehydration, and to get her pain under control. She is doing better, but still not back to normal yet.
     
  7. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    You can also file for FMLA on Trigeminal Neuralgia. You don't have to take FMLA consecutively or use it all every year, but it's good to know if necessary you can take time off (without pay, but still).

    My DF has a neuropathy condition and was given seizure meds a few weeks ago. He told me he understands now why I won't use them - he won't either now! He's thinking about trying my keto diet to see if it helps.

    And to have 2 people in your immediate family with it. Wow. G'Luck to all of you!
     
  8. Geekerbell

    Geekerbell Living with a bunch of pirates

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    I was just diagnosed with TN at the beginning of January. I also am having some other issues that seem to be neurological in nature that I am still in the process of having diagnosed. Three weeks ago I started on oxycarbazepin for the TN. Not too many side effects and it is now working pretty well.

    snarlingcoyote - I would love to hear more about the special diet you follow that is helping yours.
     
  9. Luv2Camp

    Luv2Camp DIS Veteran

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    Hi! I don't have TN, but my best friend does. There's a really good Facebook group for TN sufferers. Here's the link if you'd like to check it out. My friend suffers with hers something awful, but she has found some comfort in connecting with other people that understands what she goes through. Please let me know if my link doesn't work! :)

    http://www.facebook.com/groups/184086478397607/
     
  10. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    Hi,

    Sorry for not responding - haven't checked this thread in a while!

    Uhm, okay, a little history. I was doing a low carb diet that a dietician recommended, it was about 60 - 70 grams of carbs a day. I noticed that my face pain was diminished; significantly diminished.

    So I went out and started researching and found that it is known that a ketogenic diet will diminish or eliminate seizures. I also discovered that some of the anti-seizure meds (which are used to treat TN) have ketogenic properties.

    I figured nothing ventured, nothing gained and eliminated carbs from my diet. Basically, I eat meat, eggs, a little dairy and green veggies. After a few days of this, my pain went away. If I eat carbs, I know I will have facial pain and if I don't eat carbs I won't. If I eat sugars - carbs that the body does not have to process - I will have more facial pain than if I eat carbs my body has to process.

    I think there may be some mean point that would include a few carbs if mixed in with a lot of protein, but I'm not sure. Okay, I have to go get ready for work, so the following is from something I wrote as a "this is what ketosis is" personal blog thingy for a website:


    It works for me and it works very well. I do cheat occasionally, I will admit, but so long as I manage the cheats I'm okay. (One meal at Boma where I eat what I want = discomfort but manageable with some NSAIDs onboard. Eating schoolhouse bread the day after Boma = I start feeling pain again. I pace things out and weigh my "cheats" very, very carefully.)

    Fortunately, it's easy to cut out carbs entirely. It doesn't take anything special even at Disney! For example, at MK, if we eat at Cosmic Rays, I get a cheeseburger, toss the bun and wrap the patty up in lettuce, add a dash of mustard and mayo and I've got lunch! At a restaurant, I ask for the big carby things to be eliminated. So if I get a salad, just hold the tomatoes, hold the carrots, hold the croutons. (Green leafy veggies are pretty okay, just be careful of the amounts.) If I get BBQ, no sauce and either the green beans or the greens or veggies and my meat. Give everything else to DH or toss in the garbage. Our favorite local restaurant has about 5 choices that are extremely low carb or can be made that way. (Omelets, steak, chicken, and tuna entrees with a side of veggies and a starter of a green salad with parmesan cheese and bleu cheese dressing, no tomatoes or croutons.) Cracker Barrel has a low carb menu that lists the carbs on the menu!

    It's not that hard until you are faced with cheesecake or your favorite ice cream. Then you have to weigh your choices and make careful decisions about pain management.

    Anyway, late for work, but I'll check the threat this weekend.
     
  11. disney fan4

    disney fan4 Mouseketeer

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    I am in the process of finding out if I have trigeminal neuralgia. I started out at a doc in a box diagnosed with sinus infection the week before Christmas. I then went back thinking it was my tooth for anitbiotics to hold me over until my dentist came back from Christmas break. Went to the dentist teeth are perfectly fine. The pain continued so I went to my allergist thinking the sinus infection never cleared up. 4 rounds of anitbiotis and 8 weeks later he ordered a ct of my sinuses. They were clear so I decided it was time to see my neurologist, (I have been diagnosed with epilipsy for 15 years now). He at first wondered if my migraines had changed the way they presented so I had to try new migraine meds. He then tells me he thinks it is trigeminal neuralgia but the funny thing is I am already on oxcarbezepine for epilepsy so he thought that would be helping if I did have it. I am now on carbamezipine and oxcarbezipine to see if it helps.
    I am very frustrated and still no relief! How were you diagnosed? Tests? I just want a definite diagnosis, since this has been going on since Christmas. Is it always this hard to diagnose? Sorry for rambling, just excited to talk to people that have some experience with it :)
     
  12. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    A lot of people start having "weird" sorts of pain in their face and think its their teeth only to find out that they have TN. I went to the dentist with those sorts of pains, only to find out it wasn't my teeth. I needed some fillings anyway, so I got them and then that side of my face was in the sort of pain I just can't describe. It was horrible and miserable. It just, well. It hurt.

    I suffered that whole night until an urgent care clinic opened, instead of hauling my rear into the ER, which is probably what I should've done, but I got a great doc at the doc in a box who immediately knew what was going on. He told me to see a neurologist, diagnosed me with TN, gave me some good information and sent me on.

    My local GP didn't want to diagnose it as TN (I stopped going to him ETA: he poo-poo'd how much pain I'd been in and didn't take me seriously. Hence, he is no longer my doctor.), but I don't need a referral to go to specialist, so I made my appointment to a neurologist. The neurologist said it was atypical facial pain, because there were more nerves involved than in typical TN, but that it was fine to call it TN, because that was easier than explaining the long drawn out version. (ETA: He did a CT scan first to make sure it wasn't a tumour or something.)

    My only triggers for the kind of facial pain where I just want to die are dental work and airplane rides. Dental work is the worst, I can alleviate the pain by diet and by heat. Really, hot, wet heat, hot just below the point that it would burn my skin is best, but I can make do with one of the good thermaphore heating pads on my face. I've also discovered that if I take anti-nausea meds, heavy duty pain pills work in these instances as well. Oh, and meditation. Yes, meditating helps. Go figure.

    For airplane rides, it's only cruising at high altitudes that does it, and it's not as bad as dental work, but still pretty bad. I can take about 8 ibuprofen and I'm usually okay, but I'm much better if I've been eating low carb before hand.

    I also think having my wisdom teeth out has helped somewhat. I ate what I wanted to carb-wise a few times this past week and seemed to do okay for several days, no meds needed, which is different from what things were. I had some twinges the last day, but nothing bad, and I'm having very mild, very ignorable twinges today (pre-menstrual and there's a weather change, both of which seem to affect me), although I'm on the extreme straight and narrow and low fat this week to try and drop a few pounds I picked up. (Mmmmmm. . .Tastee Buttermilk Drop Doughnuts. . .mmmmm.)
     
  13. plumsiren

    plumsiren DIS Veteran

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    Hope it's okay to resurrect this!

    My dentist suspected that I did. I was taking MASSIVE amounts of (on a rotating basis) Tylenol and Advil, thinking I was having pain from grinding my teeth and being frustrated with myself for not being able to deal with wearing a guard. Dentist was horrified when I told him how much I'd been taking and for how long. He suspected it may have been linked to a medicine I was taking for another condition - oddly enough something people occasionally use to help treat TN - because I was on so freaking much of it (over the max. recommended dose, though an amount that was actually prescribed to me).

    It just so happened that around this time I found a new doctor for the other issue (who was shocked and appalled by how much of that stuff I was taking), and my fear that this medicine had been causing these nerve issues for all these years helped me to finally lower my dosage. I eventually got down to 1/4 of what I was originally taking, and after 5 years, my maybe-TN went away. Now I just worry how much damage I did to my liver etc. in the meantime. I've also totally blocked out what that pain felt like...I know I suffered horribly, but my brain has put up a wall so that, whenever I try to think back to it, it's like there's nothing there.

    I wish, whether the condition was TN or something similar, everyone could have had their pain go away by doing something so (relatively) simple.
     
  14. MataHari22

    MataHari22 DIS Veteran

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    I haven't been officially diagnosed, but I just had an MRI on Tuesday. It's suspected I have it. I had head and neck cancer and had 30 radiation treatments and the side effects have been numerous. I am having nerve pain up the side of my neck, face and ear. It's not all the time, but it's pretty wicked when it happens. I also have neuropathy/severe numbness and tingling in my hands and arms, up to my shoulders 24/7. It's gotten so bad, I finally consented to take the anti-seizure drugs, which does take the edge off, but makes me worthless during the day, and I wouldn't even consider driving if I took it. It's fine for at night when I am going to bed. I see my neurologist again on 8/23.
     
  15. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    Yeah, I've taken too much OTC ibuprofen and aleve over the past few years; I pee dark blood and spot dark blood for a week or two when I do take it, even a couple of pills. It's actually physically safer for me to take narcotic pain pills at this point (so long as I don't have to drive or stay awake) for flare ups. :upsidedow

    I try not to think about it. :scared:

    I'm so glad it went away for you!
     
  16. snarlingcoyote

    snarlingcoyote <font color=blue>I know people who live in really

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    My sympathies. :hug: t

    There's a group called Trigeminal Neuralgia Association that has a lot of good advice for people who have this. Check them out on the web!
     
  17. tinkerbelle1987

    tinkerbelle1987 Earning My Ears

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    Yes! I know this pain all too well. Ironically mine did not begin until I had my wisdom teeth cut out. They removed all four of them and 2 more besides that. It is the most excruciating pain known to man. Luckily I found a doctor who is aware of it, he said his wife has it as well. Nothing works for me when I am in a flare, I have taken ever pain reliever that one can think of. Its this pulsing, throbbing searing pain. I cannot be in the wind at all, even a warm breeze will trigger it for me. I will always say that the oral surgeon must have damaged my trigeminal nerves when he cut out my wisdom teeth as prior to the surgery I never had one episode of TN. Brushing my teeth is horrendous as well as sometimes it can trigger it too. I take Migraine Medications because I also have Migraines in addition to the TN. I feel for anyone who has to suffer from this horrendous pain. It leaves me in tears when I am in a flare.
     
  18. MataHari22

    MataHari22 DIS Veteran

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    Thanks very much. I will check it out.
     
  19. FrugalFashionista

    FrugalFashionista Mouseketeer

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    Sorry to hear you are going through this. The two people I know that had it took fibromyalgia medication such as Lyrica. It seemed to help. One eventually had surgery to help it.
     

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