Trigeminal Neuralgia Anyone??

Does anyone else have this pain in the ass of a condition?? For those thar don't know it, a problem with a nerve in my head which needs to be either cut a nerve or put Teflon between the nerve and my skull.... The pains are intense, t feels like fire ants crawling from my ears to my jaw... does anyone else have this?? I need Advice about how to.. live normally.

reply to post by R3N3G4D3


I have heard of conditions like that. From what I understand, though, you will be much better off once you have had the surgery.

Tramadol to cope with the pain. You can try antiepileptic agents like Neurontin or Lamictal also. Trigeminal Neuralgia usually occurs from the shingles. Best advice? If you suspect you have shingles, go on an antiviral immediately. Trigeminal Neuralgia is a scarring of the basal ganglia....so a pain syndrome occurs. It can remit at any time, but tends to bring consistent pain anywhere from several months to years. Good luck to you.

Poor you. I have neuropathic nerve damage in my gastro-intestinal tract, from a stroke. When I get an attact the only thing that clears the pain is tramadol so maybe there is something in that. I also place a wheat pillow with lavender oil drops on it (which you warm in the microwave) over the source of the pain. Heat seems to help with this type of pain.

Interestingly, a year before my actual stroke (which was caused by the contraceptive pill migrogynon and suffering from migraines) I had an attack in which my face went numb and was very painful around my right temple. They suspected neuralgia. I stopped taking the pill around this time and the symptoms lifted. Doctors now think that this was a precursor to my stroke. I was off the pill for over a year, the stroke happened a few months after I started taking it again.

i'm afraid i know all about it,

i developed this after some reconstructive surgery a few yrs ago - it the most intense type of pain apparently.

i'm sure you've found them already - but in europe they have done numerous studies (pain management) and are looking to classify it as a disability due to its intense pain.

apparently studies have been done and women who have experienced childbirth and victims of violent limb dismemberment both state the pain from these events are not as intense as the neuralgia!

but what to do about it.....

1st get some muscle relief cream - not the "deep heat" type for gods sake - get the clear gel that contains ibuprofen(sp). - its called ibuleave in the UK

2nd - get some codamol - you don't need a lot - i usually get it with paracetamol in tablets 8/500 format (8 parts codamol to 500 parts paracetamol) - thats fine though - your doc may give you 30/500 these work too but a bit of overkill codamol is addictive so try not to take too much if it can be helped. you/your doc haven't tried this probably, as most neuralgia's are diagnosed as migraine early on and codamol has no effect on migraine(can make it worse even). though it works well with neuralgia.

so on the onset of an attack take the tabs and apply cream and rest the sore side of the face against a pillow (the pillow provides relief to neuralgia for some reason) - 20 mins later, all is dandy with the world.

if the attack has started in earnest the codamol might make you drowsey - sleeping for a little as ten minutes will help a lot - as certain muscles in the face are only relaxed when you loose consciousness.

hope this helps

reply to post by BobbyShaftoe



WOW Thanks for the advice mate. I am on 300mg Lyrica and 200mg Tegretol. It's awful, If I'm in pain I take these, then I feel loopy and spaced out... viscous circle lol. I've hurt myself ALOT, but this pain is the worst.

I didn't know about that cream though thank you for your advice and knowledge.

reply to post by MavisCruet


That's bad man! You don't have to answer this but, did you regain your health fully or is there somethings you can't do that you could do before? I read about someone who had a stroke and after it started speaking German. Crazy world

I have actually been very lucky, my left arm has a hollow patch and my concentration/ memory isn't as sharp as it once was but not so as it would stop me living a normal life. I finished my degree off over the last couple of years and actually got better grades than I used to before- so maybe that is a plus to it having happened. I just have to work much harder at doing things now!

I hope you find something that works for your neuralgia, as I know how painful this pain is. Acupuncture may be another option worth considering? It is quite good when it comes to relieving pain.

WOW....I thought I was the only one that suffered from this. To be honest I haven't actually been diagnosed by a doctor, but I'm fairly certain that's what the issue is.

It started for me about 1.5 yrs ago with absolutely no warning. It was an intense pain that was above my left eye, circling to the left temple, down into - in front of and behind my left ear and then down into my lower left jaw and just under the jaw but not quite the neck area. After 3 weeks of suffering with no relief from either advil or a prescription NSAID I take for something else I thought perhaps an ear infection and went to the doctor. My ear was all clear.

My second guess was perhaps something dental...TMJ perhaps? Or something as simple as an abscessed tooth. Nope, all clear from the dentist although he did remind me that I do grind my teeth..but I've been doing that forever in my sleep and have a dental appliance. This pain was just different from the achiness of teeth grinding.

Suddenly again with no warning the pain went away. I just woke one morning to ... nothing! And was just relieved and went on with my life. About 3 months later it returned and it has been coming and going like that for the 1.5 years since it started. I am *knock on wood* currently in the "no pain" state and hoping to hell it stays away. If it comes back i will have to seek medical advice..although the thought of having injections in my face is NOT appealing.

I have started referring to it as my "Left-face-itis" whenever anyone asks. The one thing I find odd that seems to help a bit with the pain is actually sleeping ON my left side. It makes no sense I know...but if I put the right side of my face on the pillow it makes it worse and I can't sleep. I've slept on a hot water bottle and that sometimes works..but beware when you wake up in the morning the bottle's gone cold and you have lines all over your face for the day (ok maybe don't do that lol)

I find (sorry for being such a female) that the timing of my pain coming and going is suspiciously coinciding with my monthly cycle...I have found a few links from google that find others having the same comment. I may research into it being perhaps hormonally affected? I wish you all the best, and If i come across something useful I'll let you know

Michelle

Interesting that you find lying on the side of the pain helps, Michelle. That works for my migraines, which also can occur with my cycle. I get the pain in my right eye, temple, head and placing pressure on the afflicted side is definitely beneficial. Have you tried massaging the site of pain? It doesn't stop it but offers some relief.

Hi Mavis, I have tried to massage and have my husband massage the area when it's really bad. You're right, it does offer a little bit of comfort and relief but not much Interesting you mentioned migraines as that was a thought as well because when the pain is particularly bad my left eye will water and both eyes become very light sensitive. However, I have none of the other typical migraine symptoms. I had considered migraines being the culprit but more symptoms fit to the trigeminal nerve. I wonder if the trigeminal nerve and migraines could be somehow connected?

Michelle

Hey Michelle,

I never realised I was suffering from migraines, as I didn't think think my symptoms were typical either. I thought, at various points, that it was due to wisdom teeth coming through, eye strain from working at a computer all day and then not drinking enough water.

My neurologist pointed out that migraines present differently in people. As I was not feeling sick, needing to lie in a darkened room, incapacitated for days on end, getting auras or having my eye swell up and close I wrongly assumed it was not a migraine. It was, just a common migraine.The pain is intense, like someone was ramming an axe through my head, one sided and pulsing across my right forehead and temple and behind my eye.

This website gives a very quick overview:

www.nhs.uk...

Some migraines can cause numbness, tingling and even drooping of the face. When they suspected neuralgia for me, I was just having pins and needles and a numb feeling to my face that wasn't going away (not pain apart from in my head- rather than my face).

I wonder if there is a link?

I honestly feel that hitting the side of my head is less painful than the migraine (don't recommend trying that at home, though)!