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Old 11-24-2009, 03:51 PM #1
toughspiders toughspiders is offline
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Default Not sure if i have TN but feeling fed up

Ive had issue with an upper molar since i cracked it over a year ago..it was root canal'd and the dentist broke the file in the canal. The pain continued after the treatment but was localised and bearable. The dentist said there must be an accessory canal and only a specialist endodontist could find it.

Two month ago i started with extreme sensitvity around the same molar only this time upper and lower. Hot and cold caused the pain. The pain started to get worse and involved the whole jaw and inside of the ear.The inside of the left side of the gum feel like a red hot poker is piercing it all along it.

Now i get episodes that last approximately 10 minutes and they are 10 minutes of pure agony. Sometime they are brought on by eating, sometimes by nothing. I sometimes get episodes at night as well.
Some days i will only get one episode, some days it will be there all day but a dull ache all around the upper and lower jaw and in the ear.

I have seen two different dentists the first dentist did some xray and said there is no infection but could send me to get both teeth re root canaled (not something i want to do given the history of the 1st one). The second one sent me for a full jaw xray and confirmed again no infection. He reckons he it could be TN and thinks i should not go ahead with any major dental work.

I also have issue with swollen lymph nodes in my neck, clavicle and axillary regions. I have had 2 courses of antibiotics

My GP has started me on Topamax 25mg in the evening and slowly build up the use. Im not sure if these are making me fed up or if it the pain that is slowly driving me down (or both!) .

Funny thing is - if i have a good day i think "great it's going" but alas it seems to be only short lived.

Any advice??

Thanks so much

Bex
x
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Burntmarshmallow (11-24-2009)

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Old 11-24-2009, 04:33 PM #2
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Hi Weclome to NeuroTalk and this forum. Sorry you are having such a bad time with this pain monster.

I would suggest seeing a neuro doc I think everyone who has T.N. sees a neuro doc . I also would NOT get any teeth or mouth work done until you see a neuro . Having teeth work done can make the t.n. worse sometimes. A neruo doc is the best way to go .
Your symptoms sound very much like T.N. to me but I am not a doctor or professional of any kind.
Keep taking the meds and antibiotics you were given .

And relish those good days cus one bad day can sometimes seems to equal 5 good days lol.

You should also Read the stickies at the very top of this forum has lots of good info. This is a great place to be connected with others who have t.n. , find info and ask questions , vent. there is allot of great people here and I want to welcome you again.
Sending Low pain and positive energy to you
Hope you have a bountiful Thanksgiving Holiday.
PEACE
BMW
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EE03 (11-25-2009)
Old 11-26-2009, 02:48 PM #3
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Shocked I know exactly how you feel...

Hi there! I know exactly how you feel, check out the thread that i posted "Just got diagnosed with TN...but diff symptoms". You'll know about my tooth problems too.

About 2 months ago, I finally went to my internal med doctor - which was recommended by my endodontist and general dentist. He finally diagnosed me with TN, which I believe is atypical TN. He placed me on meds Carbamezapine 200mg/day, which is the lowest dose.

Realized last night that it doesnt work. So my dosage is now 400mg...This is tough, but i suggest that you consult with a neuro as well, which is what i would like to do in the future...

Hang in there... i feel ya!

Quote:
Originally Posted by toughspiders View Post
Ive had issue with an upper molar since i cracked it over a year ago..it was root canal'd and the dentist broke the file in the canal. The pain continued after the treatment but was localised and bearable. The dentist said there must be an accessory canal and only a specialist endodontist could find it.

Two month ago i started with extreme sensitvity around the same molar only this time upper and lower. Hot and cold caused the pain. The pain started to get worse and involved the whole jaw and inside of the ear.The inside of the left side of the gum feel like a red hot poker is piercing it all along it.

Now i get episodes that last approximately 10 minutes and they are 10 minutes of pure agony. Sometime they are brought on by eating, sometimes by nothing. I sometimes get episodes at night as well.
Some days i will only get one episode, some days it will be there all day but a dull ache all around the upper and lower jaw and in the ear.

I have seen two different dentists the first dentist did some xray and said there is no infection but could send me to get both teeth re root canaled (not something i want to do given the history of the 1st one). The second one sent me for a full jaw xray and confirmed again no infection. He reckons he it could be TN and thinks i should not go ahead with any major dental work.

I also have issue with swollen lymph nodes in my neck, clavicle and axillary regions. I have had 2 courses of antibiotics

My GP has started me on Topamax 25mg in the evening and slowly build up the use. Im not sure if these are making me fed up or if it the pain that is slowly driving me down (or both!) .

Funny thing is - if i have a good day i think "great it's going" but alas it seems to be only short lived.

Any advice??

Thanks so much

Bex
x
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Old 11-28-2009, 02:34 AM #4
toughspiders toughspiders is offline
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Thanks for the responses.

Had a visit to the dentist today for a clean...had a little whammy there with the spray thing they used.

I told him i would suffer later. I just did - 3 hours after the event. 10 minutes of pure hell pacing the bedroom.

My pain feels like it is in my left ear and is like my upper and lower gums are on fire.

The unusual thing is ive occasionally woken in the night with it and i believe that TN does not do that which make me think maybe its something else??

Ive lost 7lb in weight because of my reluctance to eat.

Ive come of the topamax after spending a whole day at work and then getting home only to find id gone to work with odd shoes on!! lol

Ive now been give amytriptyline and am awaiting an appointment with a neurologist
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Old 11-30-2009, 05:13 AM #5
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Even more fed up now, I cant get an appointment until Mid March!!
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Old 12-01-2009, 09:36 AM #6
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That's awful. Can you find another neurologist?
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Old 12-01-2009, 01:45 PM #7
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Quote:
Originally Posted by toughspiders View Post
Even more fed up now, I cant get an appointment until Mid March!!
I too am sorry to hear about your not getting to the neurologist. I do not know how it works where you live but when I first got TN (12 years ago) I ended up going to emergency and saw the neurological resident. His referral also got me into see a neurologist sooner.
I too wake up at night with attacks but I think it is the stage of sleep where I am close to waking.
Keep your hope up.
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Old 12-12-2009, 11:55 PM #8
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Ive got in with another one but still have to wait until the 15th January!!
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Old 12-13-2009, 07:57 AM #9
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Better than March, but still over a month to wait. If it gets to be intolerable, I'd go to the emergency room.
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Old 01-15-2010, 03:15 AM #10
toughspiders toughspiders is offline
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Default Diagnosis

Well,

Finally after all these months

I got an MRI - normal apart from mild sinus issue and enlarged lymph nodes

Saw the neurologist today

diagnosis

Cluster migraines

apparently (according to him) you can get them in you gums/face temple etc...his diagnosis is based on the fact that

1. I tend to get attacks in the evening and at night
2. The duration of the attacks (between 10 mins and an hour)
3. The fact i pace and cant stand still when i get them
4. I ram my ear into the pillow when i get them
5. I cant lie down during an attack
6. My mother has had them (but hers were mainly round her eye)
7. The twinges i get through the day can also occur

so i have new drugs - will keep you posted

will keep you posted
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