Anyone else have Trigeminal neuralgia?

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The pain has been crucifying me over the last few days. It's the worst it's been for years. I've been getting around twenty attacks a day, even in my sleep waking me up in agony. Does anyone else have Trigeminal neuralgia?

I've just put up with it for many years since I can go months without an attack then just get a few attacks over the course of several days, then nothing again for months, but if it continues like this I may need medication or surgery to have the nerve severed in my face. Advice anyone?

I don't suffer from this myself, but I have read before now that it may be one of the signs of an otherwise unsuspected gluten-intolerance; TN being one of the "peripheral neuropathies", which can be associated with long-term gluten consumption in those sensitive to it, ( which could also explain why TN tends to afflict older people ).

PS. Have you been eating an unusually large amount of bread recently, ( or changed your diet in any way the last few days )? Any gut/GI style symptoms in the last week or two?

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No changes associated with bread in my diet lately. I do have a passion for baguettes though. The only difference diet wise is chives. The garden is full of lots of fresh bunches of chives so I've been having chives with everything over the last few days - even throwing in chopped up bunches in with things like fried burgers / sausages. But I wouldn't expect chives to be a problem?

Now that is really interesting. Chives belong to the onion, leeks, garlic etc family, and many people are intolerant/sensitive to one or more of these.

I seriously suspect that chives may be the factor. Try cutting them out completely again, aswell as onions, leeks, and garlic, ( to be on the safe side ), for a few days, and see if things improve.

PS. You may well have a gluten intolerance/sensitivity, ( with the often associated addiction; "a passion for baguettes" ), but you may be generally sufficiently "adapted" to it not to suffer much from it, but the chives may represent a "stress" that takes your adaptation capacity over the limit, and boom ... .

Last edited by ouinon on 06 Apr 2009, 10:58 am, edited 1 time in total.

I'll give it a try. I'll try anything if it makes these sudden attacks of chronic pain go away - it is extreme to put it mildly. Thanks

I really hope that it works. It does sound to me like a classic case of a body under chronic, if "adapted to", pressure from food intolerances/sensitivity going berserk because of a sudden diet change. The onion family is not to be taken lightly. I hope I am right, because the alternatives sound pretty invasive/serious, ( surgery etc or major drugs ).

Good luck.

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I don't have TN, but I so know about nerve pain. I have nerve damage in my wrists, upper left arm, and feet, that has been ever so slightly getting worse over the years, caused by some muscle tone issues (what I understand anyway). I am only 25, so it scares me to think what it will feel like when I get older. Lately my left arm has been hurting, pain shoots straight up the nerve. But the worst pain is in my right foot, sometimes I will wake up at night and it will hurt so freakin bad, so unbearable it brings tears to my eyes. My last doctor wanted to do the surgery to cut nerves , but it would be a big deal and require a bunch of physical therapy, I didnt want that. I am going to try to get a couple more years of bicycle racing in before I think about anything like that, have to see how long I can go. Sorry I don't have any advice

You have my sympathy. I think only people who have experienced nerve pain can appreciate how severe it can be. I have problems with bits of bone growing and impinging on major nerves in my neck and also narrowing of the spinal column itself tightening around the spinal cord. Thankfully it is in remission at the moment but several years ago when it flared up bad the nerve compression generated an unbelievable amount of pain. I was stoned out of my mind on painkillers for over a year and awaiting an operation to chisel bits of bone out from around my spinal cord but thankfully it went into remission so I have put off the op. The trouble with the op was it wasn't guaranteed to work anyway and there was a possibility it could have left me paralysed from the neck down or dead.

The pain from the neuralgia is not as bad as the above pain but is still severe. I would compare it to someone using large bolt cutters to cut/chop my jaw bone in half! Thankfully the agonising pain is gone in a few seconds until it hits again. The pain makes me moan out load and grip my jaw; but there is nothing I can do except wait for the pain to stop.

The TN is strange in that it hits without warning. It is like a ninja attack. It sneaks up on me and beats the cr*p out of me for a few seconds then is gone, no residual pain - until the next attack. Attacks tend to repeat several times over the course of around 30 seconds then no more until several minutes later or even several hours later. They cluster over a period of three or four days then are gone for a few months. I've had TN for over twenty years, but the last two bouts have been more severe and lasted longer. Today I've been through the pain of having my jaw broken over twenty times; it tends to make me miserable and physically tired. I guess the tiredness is due to the amount of adrenaline or endorphins the body must produce in response to the pain.

TallyMan,
am have had TN for years [though have had no surgery because some doctors refuse to believe someone under sixty can have it],and believe it was root canal treatment that set it off in self.

am really recommend going to the doctor as they will prescribe some meds which should finally stabilise it [low dose tegretol or gabapentin are good for TN].
it's recognised as being one of the worst forms of pain there is,and was originally told by gp not even morphine can shift it.

It started with me in my twenties, twenty plus years ago. I described it to my doctor at the time and he said it was TN. However I never got any treatment as the bouts were short lived and infrequent. Apparently it is less common in people under 50 years of age but has been found to happen occasionally in children as young as three!

The intensity of the pain has got worse and the bouts more prolonged now though. I looked up those meds on the internet and the side effects sound terrible. I need to work and find this difficult enough with aspergers and having to work with other people. If the meds make me feel drowsy and mentally confused all the time it will make working even more difficult. Do you take those meds? If so how are the side effects for you?

Unfortunately I may have no choice though eventually, apparently the prognosis is that the bouts get more frequent with age, and the duration of the attacks can last minutes or even hours rather than seconds. The surgery option sounds wonderful despite the dangers, so may push for that if the bouts continue to worsen.

Apparently the usual cause is usually a blood vessel pressing on the base of the trigeminal nerve root where it enters the brain or the insulating layer of the nerve being damaged or missing. This results in excitation of the nerve. Unfortunately the nerve can send pain signals to the brain of such intensity it is equivalent to experiencing major facial injury, again and again.

Anyway, I'm hoping the current bout will go away again soon now. They only tend to last a few days.

Those descriptions of TN are so classic medical model, no sense of the holistic at all. The probability is that it is a reaction of a chronically overloaded system to a sudden increase in "stress".

As allergy specialists put it; " the bucket overflows", and as an older proverb puts it "The straw that breaks the camel's back", in your case the straw being chives!

If you don't want to risk other "straws" setting the NT off it might be a good idea to eliminate the fundamental stress, bread by the sound of it. But addiction to food can be very hard to break.

Maybe just be wary of indulging in large, and repeated, amounts of any food that you don't usually eat.

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Well I've not had any more chives since your suggestion yesterday and the attacks are lowering in intensity and are less regular now 24 hours later; so it seems to be on its way out again. However, it was about due to subside anyway compared to previous bouts, so unfortunately the link to chives is inconclusive, but I will be very alert to what I'm eating when the next bout comes on. Hopefully it won't be for a month or two, and if it coincides with a change of diet I'll know what to look for. Thanks for the feedback - you just may have saved me from a lot of pain.

The simplest explanation for a semi-regular recurrence of the TN, if it is a dietary "straw breaking the camel's back", would be a tendency to eat a lot of certain fruit and/or veg when they come into season, ( as with the chives ), because it grows in your garden or it appears at the market.

Two other food families likely to provoke reactions are the mustard, cress, broccoli and cabbage family, and the tomato, aubergine and pepper family, ( which also includes potato but if you eat that all the time you may be adapted to it ).

Anything eaten suddenly in big quantities over a few days might do it if your system has exhausted its adaptation capacities on handling some daily stress, ( like bread if you were sensitive to wheat ).

Good luck anyway. I'm glad to hear the pain is passing, and hope very much that you discover it is a dietary thing that you could regulate to some extent.

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I have a different form of trigeminal neuralgia (cluster headache, a trigeminal autonomic cephalgia) ... I get anywhere from 1 to 7 intense headache per day when in cycle - mine hit behind the eye (which bulges in an attack) and sometimes the pain creeps down the trigeminal into the jaw. Imagine eating too much cold stuff and getting an extremely intense 'brain-freeze' for 15-75 minutes per session, multiple times per day.

Garlic and onions have been reported as triggers for clusters - those veggies stimulate the nitric oxide and hydrogen sulfide pathways in the body. So chives could also be a trigger.

Alcohol is the #1 trigger for clusters. MSG is fairly common, as are gasoline and perfume. But triggers are not the same as a cause.

For me, input from the nerves around the sinus to the trigeminal are an issue - my most recent cycle was set off when I choked on a half of vitamin and ended up vomitting through my mouth and nostrils - the acid burn was rather unpleasant, to say the least, as were several weeks of disturbed sleep punctuated by intense pain. I also have TMJ issues that feed static impulses to nearby nerves.

Of course, classic trigeminal is different than clusters, but for me, the following things help:

1) melatonin at night and regular sleeping hours
2) Magnesium supplements - most clusterheads have low levels, and many respond to supplements.
3) Taurine ... Red Bull can abort clusters, the taurine is an inhibitory amino acid. Much cheaper to add taurine powder to my coffee than drink red bull.
4) Kudzu - useful for migraines, clusters ... inhibits the serotonin-2 receptors.

I would also check out myofascial therapy as an option - although it might trigger for you.

What about acupuncture?

I have occipital neuralgia, so probably have a good understanding of the pain that you're experiencing. My zaps were increasing in freaquency during a one-month period last summer. Haven't had many since, but it's scary when they'd previously happend no more than once every four months or such. Sorry I don't have any direct advice.