# Trigeminal Neuralgia



## Jillaroo

_I have just been diagnosed with this after suffering from it for over 2 years, i finally have a Neurologist who is doing some tests to try and work out why i am still suffering, i have to have a MRI tuesday where i lay there for 75 minutes while they check the nerve in my head , spine and neck, my bad back will hate the concrete type bed i have to lay on. It has him concerned as i am sweating like mad on the right side where i have it, i put a new top on and 5 minutes later it is soaking on the right side, i am washing so many tops as i go through 2-3 each day. He has put me on Tegretol and i am finding they are knocking me around, i feel a bit like a Zombie, not looking forward to tomorrow i start taking 2 a day.
             Went into town to get a blood test as the radiologist needs to know what my kidneys are like, my veins collapse she tried twice and no go, so i am going to the girl here where i live hopefully she can get some blood out.
             Sat up due to the massive headache last night, it was a weird one, have to find out today if i can take pain killers while taking this Tegretol, so as you can see i am a misery guts.
               Has anyone here had this or know of anyone who has._:coffeelaugh:


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## CeeCee

Sorry to hear this Jilleroo...I've not heard of it but my sister has taken tegretol for a long time.  She had burning feeling in her tongue and went from dr to dr and nobody could find out why...finally they sent her to a dr who said it was the nerves in her tongue..could have been damaged so she put her on the tegretol..a high dose too and that helped her, she barely takes any now but it's been at least 20 yrs. that she took it.

I'm pretty sure she has taken a pain med once in awhile too along with the tegretol.

she is 52 now but this started in her 20's.


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## Falcon

Jilly, I hope your problem is solved quickly.  Nobody likes pain or any kind of discomfort.


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## Ina

I found it is for, nerve pain, Bipolor disorders, and seizures. Does any of this apply to you Jill? Where is Vivjen when we need to pick her brains?


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## SeaBreeze

I wasn't familiar with it at all Jilly, and had to look it up. http://www.hopkinsmedicine.org/neur...headache/conditions/trigeminal_neuralgia.html  Very sorry to hear you're suffering with this condition.  Hope they can do something to ease your pain. :girl_hug:


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## Jillaroo

_Apparently they find that the Tegretol which is basically for seizures works on Trigeminal Neuralgia as the nerves are involved, not sure how it works but certainly have had no relief from it yet, i don't have seizures or Bipolar myself._


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## i_am_Lois

Jillaroo, I'm sorry to hear you are dealing with so much pain & discomfort.
I've never heard of trigeminal neuralgia nor sweating on one side of the body (unilateral hyperhidrosis).
I did a little reading.
Your doctor is following standard medical procedure with you.
Tegretol is the first med they try because it's use is successful in 69% of patients.
There are several other meds they can have you try, since the Tegretol doesn't seem to be effective for you.
The MRI scan is a way they can possibly find out what's causing your problems.
I see there are many Trigeminal Neuralgia support groups. Like this one:
http://www.dailystrength.org/c/Trigeminal-Neuralgia/support-group
You could check to see if there's one in your area.
It may be comforting for you to speak to people who know exactly what you are going through.
I wish you well and much good luck through all this Jill.


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## Casper

_*Jilly.....I hope that after they do your MRI they'll know a lot more about your condition
and be able to treat you with the appropriate medication for your pain.
In the meantime, I hope your specialist can suggest something else to give you some relief now.
Keep us up to date and take care.:flowers:

*_


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## Jillaroo

_Thanks guys for your nice thoughts, yes the MRI will be the one to show what's going on in my body, about time too. Lois that's interesting that the sweating on one side has a name i must read up on that as it does get me down and thanks for the link for the support group i will have a look _:flowers:


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## CeeCee

My sister just texted me and said Neurontin is better than tegretol...less side effects.


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## Vivjen

Often used for neuralgia......don't put the dose up yet if you don't want to.
paracetamol won't harm......usually try tegretol before Neurontin here....
best of luck Jill.


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## Vivjen

Ina said:


> I found it is for, nerve pain, Bipolor disorders, and seizures. Does any of this apply to you Jill? Where is Vivjen when we need to pick her brains?



I sleep Ina!


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## Ina

Hi Viv, Sorry, I know you can't be around all the time. My bad.


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## Vivjen

Ina said:


> Hi Viv, Sorry, I know you can't be around all the time. My bad.



Morning/afternoon Ina!

If you do have these conversations in the middle of my night! Only joking....hope you are coping ok....and I am thinking of you both


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## Ina

Right now, I could throttle someone, but you never see these scumbags. We have to go to the police station tomorrow to get a case number, so we can file theift charges against some online fraud, that cost us just under $1500.00. Not what we need as we are covering a barial right now.p :soangry:


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## Vivjen

Oh Ina.....I am so sorry.....


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## Ina

I know Viv, but dang it, makes me want to kick some dirtbag. So how are you doing? And aren't you going on a trip? I rather think about you than me right now.


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## Gael

*Some info for you Jill and so sorry that this has come upon you.*


Trigeminal neuralgia, sometimes called tic douloureux, is an extremely painful condition that causes sudden, intense facial pain most often described as "stabbing" or "lightning-like."  It is due to irritation of the trigeminal nerve, a cranial nerve that normally senses touch, pain, temperature, and pressure on the face. Usually, the irritation stems from pressure on the nerve from an abnormal blood vessel, but the problem can also be related to a tumor or, less commonly, to a rare type of stroke. As many as eight percent of multiple sclerosis patients develop trigeminal neuralgia due to the wearing away of part of the protective covering (myelin sheath) that insulates nerve fibers.

Neurontin, is an anti-seizure medication usually prescribed to treat epilepsy. It is one of a number of drugs that can reduce the sensitivity of the trigeminal nerve. If  Neurontin is not working, I suggest that you request a trial of intranasal Nubain, a non-addictive narcotic painkiller with a low abuse potential. Nubain (nalbuphine hydrochloride) usually comes in injectable form but your physician can ask your pharmacist to make a nasal spray for you. Nubain is a safe drug that works well for some people with your condition. You also could try taking a calcium/magnesium supplement, which can help calm overactive nerves. In addition, I recommend that you try acupuncture and hypnosis, both of which can be helpful. Finally, you might experiment with an extract of lion's mane mushroom (_Hericium erinaceus_), which provides nerve growth factors.
Several surgical procedures are available for treating trigeminal neuralgia if all else fails, but I consider them drastic options to be considered only as last resorts. One procedure inactivates a section of the trigeminal nerve. It works initially in 99 percent of all cases, but up to 50 percent of patients eventually experience recurrences. Another type of surgery that provides long term relief to between 70 and 80 percent of patients involves repositioning the blood vessel that is pressing on the nerve, if that is the problem. However, this operation requires opening the skull and usually is recommended only for patients under the age of 65.
Andrew Weil, M.D.


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## Jillaroo

_Thanks very much for the info Gael, that Nubain & Neurontin interest me. I don't wish to have surgery that's a last resort as any type of surgery on the brain is risky and if i can sort this out without it i will be happy, as long as the intense sweating  and pain stops i will be very happy_


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## Vivjen

I am not sure that Nubain is available anywhere except US; I have never come across it in UK.
neurontin is readily available though; usually used as second line treatment..if Tegretol isn't effective.


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## Gael

YW Jill. That's from Dr. Andrew Weil a pioneer in the field of integrative medicine in the US and a respected and innovative source. I hope something in there can be of help. And you're in my prayers.raying:


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## Casper

_*Jilly......These links may give you a bit more info on Neurontin and Nubain.....

here's a link to the Chemistwarehouse site re Neurontin....
http://www.chemistwarehouse.com.au/product.asp?id=6554

Another one re Gabapentin (Nubain) gives some info to check out....
http://www.pbs.gov.au/medicine/item/4591P-8505P

:girl_hug:
*_


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## SeaBreeze

Jilly, hope all goes well with the MRI on Tuesday, I know that's going to be a challenge for you in itself.  Sending good thoughts and prayers your way, will post if I come across anything that may be helpful to you.  Take care.


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## Jillaroo

> YW Jill. That's from Dr. Andrew Weil a pioneer in the field of integrative medicine in the US and a respected and innovative source. I hope something in there can be of help. And you're in my prayers.


_
Thanks Gael i appreciate it._



> Jilly......These links may give you a bit more info on Neurontin and Nubain.....
> 
> here's a link to the Chemistwarehouse site re Neurontin....
> http://www.chemistwarehouse.com.au/product.asp?id=6554
> 
> Another one re Gabapentin (Nubain) gives some info to check out....
> http://www.pbs.gov.au/medicine/item/4591P-8505P


 *Thanks Casper for the info will check it out*



> Jilly, hope all goes well with the MRI on Tuesday, I know that's going to be a challenge for you in itself. Sending good thoughts and prayers your way, will post if I come across anything that may be helpful to you. Take care.


 *Thanks SB the one thing i am concerned about is my bad back and the hard bed i have to lay on for all that time*

:flowers:


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## Rainee

Hi Jilly.. so sorry to hear that you have that pain.. I have bad nerve pain in both my legs due to damaged nerves in the back of the knees.. 
my doc wouldn`t let me have that tegretol.. says its no good when you have blood pressure.. but I just take panamax I can`t take panadol, 
strange isnt it it makes the pain worse and the only two things that help me are the panamax or aspro clears I take prob once a day.. 
A word of advice when you have the MRI I had one last year I don`t like it but ask the radiologist that is there that you want a mask to 
cover your eyes its much better all round as you won`t feel claustrophobic.. and ask for a soft pillow behind your knees and ankles.. 
I only asked for a mask and wow it was so much better also they put the soft foamy cushion under my knees and rested my ankles on that , 
as you have to stay perfectly still so best of luck I`ll be thinking of you and also i`ll say a prayer for you .. you will be fine and I hope 
they come up with some relief for you even a cure.. hugs and take care ..


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## Old Hipster

Good luck tomorrow Jilly. :love_heart:  I hope you get some answers and somebody give you some much needed relief.


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## Vivjen

Best of luck, Jill; there is something to help you out there...just need to find the one for you.


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## Pam

All the best, Jill. I had a scan a couple of weeks back and, same as Rainee, a support cushion was put under my knees which did help.


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## nan

So sorry to see you are suffering with Trigeminal neuralgia, Jilly, and I hope you find some relief from it soon, will be thinking of you re the MRI .


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## Ina

Jillaroo, has the results for your MRI come back yet? What did they find?


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## Casper

_*Ina.....it's today Jilly is having the MRI.......
*_


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## Ina

Thank you Casper, I'm still not thinking straight, and time has gotten gumbled for the last three weeks for me. Then I'll just wait till Jillaroo tells us.


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## Jillaroo

*Thanks for your kind words girls, i have just got home from having it,i was there 4 hours as i got there a bit early, the MRI wasn't very pleasant as i was right in the tunnel for an hour and had a cage thing on my head, just when i thought it was finished they injected dye into my veins so the nerves in my brain showed up, i had to keep trying to think of other things to get my mind off it, i had an itchy ear at one stage it drove me mad. The nurses there called my MRI a Marathon. Then i had to have the Doppler ultrasound that is weird listening to the sound of your blood it's a loud swishing noise.
                              So now i wait and see what it shows as to what is done about the TN  *


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## Casper

_*Jilly, that really sounds like a marathon and you did very well to keep your mind off it.
Isn't it strange how you get these itches when you know you can't scratch.:grrr:
I'm just so glad for you that it's all over and now, hopefully, they can just get you relatively pain free.
I hope everything goes well for you.:bighug:*_


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## SeaBreeze

Hoping the results of the MRI are useful Jilly, and they can do something to help you through all this.  When will you have the results?


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## Jillaroo

_I'm hoping today SB i will ring the surgery after and if they have the results i will have to go and see the Doctor_


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## Ina

Good luck Jilly!


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## Rainee

Hope all is well Jilly , its not pleasant at all , lets know how you get on.. hugs ..


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## Jillaroo

_Got the results and all is normal, so back to square one, i am researching online and found a good site last night that suggests a few natural things, i just wish i could stop the excessive sweating on my head and right side i end up soaked. Would love some relief from the pain, i can't keep taking meds to stop it, i am weaning myself off the Anti convulsant tablets as they make me feel like a zombie and all i want to do is sleep_


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## Ina

Go carefully Jill, and keep us informed, please.


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## Rainee

Jillaroo said:


> _Got the results and all is normal, so back to square one, i am researching online and found a good site last night that suggests a few natural things, i just wish i could stop the excessive sweating on my head and right side i end up soaked. Would love some relief from the pain, i can't keep taking meds to stop it, i am weaning myself off the Anti convulsant tablets as they make me feel like a zombie and all i want to do is sleep_



Hi Jilly , So good to hear your news.. as you say back to square one.. so maybe its the medications that are causing it.. so keep us informed and take lots of care of yourself ok.. and take it slowly one day at a time...


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## Casper

Jillaroo said:


> _Got the results and all is normal, so back to square one, i am researching online and found a good site last night that suggests a few natural things, i just wish i could stop the excessive sweating on my head and right side i end up soaked. Would love some relief from the pain, i can't keep taking meds to stop it, i am weaning myself off the Anti convulsant tablets as they make me feel like a zombie and all i want to do is sleep_



_*Jilly, If your results came back normal, does the doctor have an explanation for the causes of the sweating and the pain you're experiencing?
It's fine to prescribe pain meds for relief but there has to be a reason why it's happening and treat it if possible.
Take care and keep us up to date.*_:bighug:


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## Jillaroo

_Hi Casper i am doing some research at the moment, i have found a good site which is a forum so will be asking questions there, i notice they mentioned B12 and Omega 3 is good, i will read some more and see if anyone else has the sweating problem with their ailment, i need answers on that because it is driving me mad, while sitting here it is dripping off the right side of me.
They also talked about the tablet i am weaning myself off and they too say it makes them very sleepy, for me it's not on due to me living on my own i need to have my wits about me. _


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## Casper

_*Hi Jilly, You're doing the right thing weaning yourself off those tablets, they must be powerful. Not a good idea if you're alone, you wouldn't want to chance driving anywhere either, too risky. 
I've never heard of anything like your symptoms. I'm not a person who sweats very much at all and to be like that must be shocking for you. It would be great if you could go the natural way and control this but it's not always possible to do so. It's worth a try though.
I really feel for you Jilly and hope you stumble across something to give you some relief.....fingers crossed.:fingerscrossed:

Thinking of you. Keep us posted.
Hugs. :rose:*_


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## Jillaroo

:thankyou:_Thanks Casper it is driving me mad the sweating, when i am out it is very embarrassing always mopping myself, i go through about 1 inch of large tissues each time i'm out, and top it off with the pain in the head well i have had enough._


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## Vivjen

Just a thought Jill; have you tried evening primrose oil for the sweating?
used for the menopause sometimes....or even red clover?


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## Jillaroo

_Thanks Vivjen when you say red clover what dose and how as i know nothing about it, i do know about evening primrose oil_:bowknot:


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## Vivjen

Red clover has been used for sweats, (I used it for a while on the recommendation of my doctor; no HRT!)

Is quite expensive, but only one tablet a day, and you don't have to take it every day if you don't want to; I took it for about 3 weeks then laid off for three or four weeks.

It comes in one strength, over here....close to evening primrose oil on the shelf....
just an idea, slightly out of the box...


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## Jillaroo

_Thanks Vivjen i am all for alternative if i can find it_:thankyou:


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## nan

Jilly first of all I want to wish you a Happy belated Birthday, and also I hope you soon find out what is causing your Trigeminal Neuralgia,it must be very painful.


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## Jillaroo

_Thank you Nan but it was Caspers birthday, but i can take it as an early one for mine in september_:flowers:


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## SeaBreeze

Vivjen said:


> Red clover has been used for sweats, (I used it for a while on the recommendation of my doctor; no HRT!)
> 
> Is quite expensive, but only one tablet a day, and you don't have to take it every day if you don't want to; I took it for about 3 weeks then laid off for three or four weeks.
> 
> It comes in one strength, over here....close to evening primrose oil on the shelf....
> just an idea, slightly out of the box...



I used Red Clover throughout my menopause for hot flashes and night sweats.  Here in the US it is very inexpensive, and available at health/vitamin stores.  It helped a lot, without the side effects of HRT. http://www.natmedtalk.com/wiki/Red_Clover


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## Denise1952

Jillaroo said:


> _I have just been diagnosed with this after suffering from it for over 2 years, i finally have a Neurologist who is doing some tests to try and work out why i am still suffering, i have to have a MRI tuesday where i lay there for 75 minutes while they check the nerve in my head , spine and neck, my bad back will hate the concrete type bed i have to lay on. It has him concerned as i am sweating like mad on the right side where i have it, i put a new top on and 5 minutes later it is soaking on the right side, i am washing so many tops as i go through 2-3 each day. He has put me on Tegretol and i am finding they are knocking me around, i feel a bit like a Zombie, not looking forward to tomorrow i start taking 2 a day.
> Went into town to get a blood test as the radiologist needs to know what my kidneys are like, my veins collapse she tried twice and no go, so i am going to the girl here where i live hopefully she can get some blood out.
> Sat up due to the massive headache last night, it was a weird one, have to find out today if i can take pain killers while taking this Tegretol, so as you can see i am a misery guts.
> Has anyone here had this or know of anyone who has._:coffeelaugh:



Hi Jill, I am so sorry you are going through this.  Sounds you are staying in pretty good spirits considering.  Glad you shared it here because for me it always seems a bit less scarey when I let other know so we can all talk about it.  Maybe someone here has something like it too, that is helpful, to know someone understands at least.  big hug, Denise


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## Denise1952

Vivjen said:


> Just a thought Jill; have you tried evening primrose oil for the sweating?
> used for the menopause sometimes....or even red clover?



Also lots of water.  You probably already do that.  Oh I hope they find some answers with the bloodtests and MRI.


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## Vivjen

To all.....as Seabreeze said, red clover, or isoflavines, are recommended for menopausal symptoms, especially hot flushes/flashes....and I see no reason why they can't be used for any other type of sweating.....
a natural product; better than HRT IMO; as long as symptoms are not too severe.

Just trying to think out of the box for Jill; I suspect she will try something 'herbal' with very little risk...


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## Jillaroo

_Thanks for the info i will need to inquire if these will interfere with the meds i am taking for blood pressure and depression_


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## Vivjen

Red clover doesn't; well, it didn't interfere with mine!


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## Jillaroo

_Thanks Vivjen will check it out when next in town_:bowknot:


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## Rainee

Hi Jilly. hope you find some relief from the head sweating..and also your pain..I am going to start 
on the rose hip vital capsules tomorrow for pain they say they help 90% of the pain so worth a try 
and not drugs .. also for you drink at least one cup of sage tea a day.. Sage tea is another home remedy for profuse sweating.. Sage tea is also great for reducing stress levels as you would be a little stressed over your problems.. , you won`t see results immediately but in at least 3 weeks you should also my daughter said to tell you to get some limes.. cut in half and rub a half over your head , leave it for half an hr then wash out it helps she says.. and if that helps you can get yourself a lime tree and grow in a tub thats what she has.. but these are just advices not telling you to do them ... hope all works out well for you keep us posted..


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## Jillaroo

_Hi Rainee, Thanks for all the info do you use fresh sage leaves or a bought tea, that's interesting about the limes, i will give that a try.
            I hope your health is better than it was, hope the rose hip helps with your pain, something we both could do without. _


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## SeaBreeze

Jilly, I posted a question on your behalf on the NatMedTalk forum, and there has been one reply so far, may be a few more coming in the future.  Vitamin B12 shots/supplements was suggested, and a link was given where folks recommended other things for natural treatment, such as Peppermint Oil...http://www.natmedtalk.com/showthread.php?p=217313#post217313


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## Casper

_*Jilly, Thought you might be interested in checking out this website.....there is a support group in Coff's Harbour.
It may be of some help to you.
http://brainfoundation.org.au/medical-info/59-trigeminal-neuralgia

:bighug:*_


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## Jillaroo

_Thanks Casper it is one i had bookmarked, thanks for going to all that trouble i appreciate it_


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## Tom Young

Sorry for the pain...
As far as understanding the ailment, it looks like the Wiki article has a comprehensive overview, along with a very long list of reasons for and treatments of. 
http://en.wikipedia.org/wiki/Trigeminal_neuralgia

Especially unusual is the "tri" part of the nerve, which transmits pressure, temperature and pain.  It looks as if one of the many reasons for the problem is the loss of the myelin sheath that covers and protects the nerve.  
Lots of info about  many possibilities including associated diseases, dental and jaw related insults (injuries or abnormal jaw teeth alignment).

Nerve pain is strange... the origin may be far from the "hurt".  Not relevant to your case, but an example... I have peripheral neuropathy, which was misdiagnosed as carpal tunnel... after an operation for that, no improvement... The next suspect was diabetes, but that was also, not the case.  Finallly determined to be an bilateral, both sides of the body (both hands)... nerve problem, for which there is no apparent cure. The nerve causing the problem is likely located somewhere in the spinal column, accounting for the both sides problem.  Fortunately not debilitating except for no pressure sensitivity in the hands... (feels like you're wearing a heavy glove).  The good part, in my case, is that the initial pain associated with the problem is now tolerable, and gabapentin (Neurontin) takes care of that when it gets bad..  I know that has no relation to your situation, except that eventually we learn to deal with health problems, and can consciously learn and be able to do whatever works best, when a pain attack occurs.  

I wish you the best outcome.


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## Jambi

Tom Young said:


> I have peripheral neuropathy, which was misdiagnosed as carpal tunnel... after an operation for that, no improvement... The next suspect was diabetes, but that was also, not the case.


 

Typically a thyroid test should be done before carpal tunnel surgery; there are a lot of folks with thyroid problems that undergo carpal tunnel surgery and alas, no improvement.


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## Jillaroo

Tom Young said:


> Sorry for the pain...
> As far as understanding the ailment, it looks like the Wiki article has a comprehensive overview, along with a very long list of reasons for and treatments of.
> http://en.wikipedia.org/wiki/Trigeminal_neuralgia
> 
> Especially unusual is the "tri" part of the nerve, which transmits pressure, temperature and pain.  It looks as if one of the many reasons for the problem is the loss of the myelin sheath that covers and protects the nerve.
> Lots of info about  many possibilities including associated diseases, dental and jaw related insults (injuries or abnormal jaw teeth alignment).
> 
> Nerve pain is strange... the origin may be far from the "hurt".  Not relevant to your case, but an example... I have peripheral neuropathy, which was misdiagnosed as carpal tunnel... after an operation for that, no improvement... The next suspect was diabetes, but that was also, not the case.  Finallly determined to be an bilateral, both sides of the body (both hands)... nerve problem, for which there is no apparent cure. The nerve causing the problem is likely located somewhere in the spinal column, accounting for the both sides problem.  Fortunately not debilitating except for no pressure sensitivity in the hands... (feels like you're wearing a heavy glove).  The good part, in my case, is that the initial pain associated with the problem is now tolerable, and gabapentin (Neurontin) takes care of that when it gets bad..  I know that has no relation to your situation, except that eventually we learn to deal with health problems, and can consciously learn and be able to do whatever works best, when a pain attack occurs.
> 
> I wish you the best outcome.



_*I'm sorry to hear about your condition, it's very frustrating isn't it  i have read about neurontin as the tegretol is awful, i have been suffering from this for 2 1/2 years now so you get a bit immune to the pain sometimes, then it charges in and let's you know it's still there, i was reading on a forum some women have been suffering really badly from TN for 10 years or more , i do think it's about time they came up with a cure .*_


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## Jillaroo

_As well as Trigeminal neuralgia i am in a lot of pain with a buggered hip and knee, both need replacing, heavens knows when i can get them fixed,so not a happy girl_


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## SeaBreeze

Jilly, sad to hear you're doing so poorly...sending warm wishes and hugs your way. :love_heart:


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## Denise1952

I just finished reading about his ailment Jill.  I can't tell you how much I felt for you when reading the article.  My sister's friend has it as well, and I had never read in depth about it until Seabreezes post brought this to the top of the latest posts today.  I don't think I have read about any ailment in a long time, that sounds as awful as this.  I know there is no way I can understand how it must be to have it.

I am so sorry you have to deal with this.  I'm sure you have read all the "to do's" if you have it, but if not, and you want to know about the article I read, here it is:http://www.wikihow.com/Alleviate-Pain-Caused-by-Trigeminal-Neuralgia

Not a clue if anything mentioned in this article would help you.  It might be worth a try, and it also might be full of things you already have tried, Denise

[video]http://www.wikihow.com/Alleviate-Pain-Caused-by-Trigeminal-Neuralgia[/video]


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