[AnastasiaGrecia]

Some times because of the pain I think that I have something else and not TN.
It all started last September and I though I had just a migraine and that after went to sleep I would wake up just fine...
But I didn't not.
Many people told me is because of been stressfull but how is it possible I am on holiday and I have the pain ?
For 2 months the pain stopped. But in January it came back... I did in March 2 xrays and nothing wrong found.
So a Greek doctor told me that I have prosopalgia and if you google it is the greek name for TN and not TN!!
He gave me Topamac but after 3 months the pain is still here. But topamac is to prevent migraine and not for TN.
So I went to a UK doctor where I live * i live in Gibraltar* and she told me I was taking the wrong medicine.
That doctor was the first one telling me I have TN but back then I didn't believe her.... don't know why
She gave me Tegratol so I am taking 100mg in the morning and 100mg at night but still... some days I am better some days I am not. I am so desperated.... really I could never believe this would happen to me. the pain is only in the right side behind my eye...

I have heard stories that people cannot eat etc but I am ok with that. Is only I cannot feel the pain anymore. I think that my dose is too low because if you consider it for so long I had the wrong treatment....

After how long will the pain go ? will it ever go ? Can I live like a normal person or not ??

[Burntmarshmallow]

Hello Anastasia G. I hope your pain is at a lower level as you read this.I am glad you found your way to such a great forum. There are some pretty caring understanding folks here and LOTS of info and support.
I agree with what you think..your med dosage needs to be higher. but you SHOULD BRING THIS UP WITH THE DOCTOR who has you on this med. here is a list of the most common meds used for pain control for T.N.
It is from the info stickies above...
you should read up top where the info threads are, they are filled with great info that will help you.

http://neurotalk.psychcentral.com/thread2039.html
here is part of the posting from the tips for new comers....(((Ella ))))

Some of the other popular drugs to treat TN are: Phenytoin (Dilantin), Oxycarbazepine (Trileptal), and Gabapentin (Neurontin). Phenytoin was first introduced in 1942, and in 1962 Carbamazepine (Tegretol) became the most commonly used drug. Baclofen (Lioresal) may add to the effectiveness of these drugs. Recently, Neurontin has been widely used because of reduced side effects, although is more expensive and somewhat less effective then Tegretol. The anti-convulsants are thought to reduce TN attacks by decreasing the hyperactivity of the trigeminal nerve nucleus in the brain stem.

Trileptal (Oxycarbazepine)

Trileptal, or oxycarbemazepine, is a form of Tegretol that is becoming more widely prescribed for a variety of conditions. It has recently been found to be effective for some patients with trigeminal neuralgia. Like Tegretol, it is an anti-seizure drug, but the side effects are less severe and less frequently experienced.

The dose usually begins at 300 mg twice a day and is gradually increased to achieve pain control. The maximum dose is 2400-3000 mg per day. Common side effects are nausea, vomiting, dizziness, fatigue and tremors. Less frequent symptoms are rash, respiratory infections, double vision, and changes in electrolytes in blood. If you have had an allergic reaction to Tegretol (carbemazepine), then you should not try Trileptal. As with other anti-seizure medications, increasing and decreasing the dose should be gradual.

Phenytoin (Dilantin)

Phenytoin relieves pain in over half of TN sufferers at doses of 300 to 500 mg, divided into three doses per day. Phenytoin may also be administered intravenously to treat severe exacerbations of TN. The maximum dose depends upon the severity of the side effects that are experienced with the drug. These dose-dependant side effects include nystagmus (rapid movements of the eye), ataxia (decreased coordination), dysarthria (speech difficulty), ophthalmoplegia (paralysis of eye movements) as well as drowsiness and mental confusion. Other effects of the medication may include gingival hyperplasia (enlargement of the gums in the mouth) and hypertrichosis (excessive hair growth). Rare but serious complications may occur, including allergic skin rashes, liver damage and blood disorders.

Baclofen (Lioresal)

Baclofen is not as effective as Tegretol or Dilantin for TN, but may be used in combination with these medications. The starting dose of baclophen is usually 5 mg two or three times a day, and may be gradually increased. The usual dosage taken for complete pain relief is between 50 and 60 mg per day. Baclofen has a short duration of function so sufferers with severe TN may need to take doses every 3 to 4 hours.

The most common side effects associated with baclofen include drowsiness, dizziness, nausea and leg weakness. The incidence of these side effects is reduced by starting with a low dose of baclophen that is gradually increased. However, approximately one tenth of sufferers cannot tolerate baclofen. A rare complication is a confusional state that appears shortly after baclofen is started, but this resolves quickly when therapy is stopped. Baclofen should not be discontinued abruptly after prolonged use because hallucinations or seizures may occur. If these withdrawal symptoms do occur, the previous dose of baclofen is usually re-instituted and then gradually reduced.

Gabapentin (Neurontin)

Gabapentin is an anti-epileptic drug that is structurally related to the neurotransmitter GABA. This drug is almost as effective as Tegretol but involves fewer side effects. The starting dose is usually 300mg three times a day and this is increased to a maximal dose. The most common adverse reactions include somnolence (sleepiness), ataxia (decreased coordination), fatigue, and nystagmus (rapid movements of the eye). There is no known interaction with Tegretol or Dilantin, permitting usage of these drugs in combination with Neurontin. As with all of these drugs, rapid discontinuation should be avoided as severe withdrawal reactions may occur.

-------------- ------------------- --------------------
Most have to switch meds and combine meds to get the most benefit and be able to manage the pain.
What type of doctor are you seeing? a general doc, a pain doctor a neruo???
I am only speaking for myself when I say the pain can go in remission but I do not believe there is a cure for T.N. OR ANY NEURALGIA . I tend to believe the only thing to do is search and find the best way to manage and control the pain. and it is different for each of us. what helps one may not help another. so keep hope!!
and dont forget about all of us here ..we know and we care .if you need any help or support this is the place to find it.
low pain wishes and hugs to you my new friend
PEACE
BMW

[AnastasiaGrecia]

Reading your reply really brought tears in my eyes just because here finally I have some people that can understand what I am going through!
When I tell my mother or my friends about the pain they dont seem to understand me and tell me to be patient.
I am sure that my pain is less from the rest of the people here because I have heard stories people cannot even eat but I am ok.
My doctor is a general doctor but she seems to know quite a lot about it.
I am from Greece but I live and work in Gibraltar and a neurologist comes only 3 times a year.
Before the Greek doctor gave me the wrong treatment she told me what I have and what medicines I need to take but like I said I didn't believe her.
She is on holiday now she will be back in 2 weeks so I need to wait.

Burntmarshmallow thanks

[Burntmarshmallow]

Anastasia
We know exactly what you mean... it is so true others really dont understand
what T.N. is and how it affects our daily living. it is hard to understand something you cant see with your eyes.It is not like a broken leg in a cast or stitches . It makes it hard. the caring for thread up top here might help ...help you be able to get others in your life to understand print it out if you are able to and share it with those around you and maybe even your doctors .
Two weeks is a kinda long time but at least you know you will see her in the near future. Try to relax and avoid the triggers as much as you can. like sometimes turning head a certain way or bending over it makes the blood flow to head and can make the pain flare up . just baby yourself when you can .take a nice bath listen to pleasant music and try to get good sleep at night.
I hope the visit with your Doc comes quickly and that you get an adjustment with your meds that really helps lower the pain level. maybe write down some of the meds in that link and ask the Doc about them.
Please Let us know how your doing too and know we are sending our prayers and positive thoughts to you and your family Anastasia
PEACE
BMW (Tina)

[AnastasiaGrecia]

Tina how did you find relief?

[Burntmarshmallow]

No meds helped manage my pain
I have a PNS/Nuero stim implanted and that is how I got relief. I also meditate and have Reiki done along with taking vitamins those things help me .
but the biggest is my stimulator it saved my life.
I hope you are doing better and that you have gotten to see that doc.I think adjusting your meds will help you.
Stay in touch and know we have you in thoughts and our prayers.
PEACE
Tina...BMW

[Illana]

Originally Posted by Burntmarshmallow

No meds helped manage my pain
I have a PNS/Nuero stim implanted and that is how I got relief. I also meditate and have Reiki done along with taking vitamins those things help me .
but the biggest is my stimulator it saved my life.
I hope you are doing better and that you have gotten to see that doc.I think adjusting your meds will help you.
Stay in touch and know we have you in thoughts and our prayers.
PEACE
Tina...BMW

Hello, I'm due to see a neurologist this week because of ATN pain which began with a pulled tooth. From what I've been reading a lot of people seem to have this started from Dental work. I wonder if anyone's ATN or TN has gone away on its own? (I was hoping it would) but from what I've been reading it has not.. I was kind of hoping that maybe my nerve just had to heal? Is there a slight chance of that?

[Burntmarshmallow]

hello Illana
how long ago did you have the tooth pulled? most times you should give it 3-4 months to "settle down" .
when were you told you have ATN /TN ??
I think even if a nerve is damaged it will always try to regenerate /re- grow .like with me my nerve is snapped on the lower right and it mis fires as it is trying to heal but it has been 11 years and it just isnt going to happen but the nerve is and always will keep trying to re-generate and re-grow so it mis-fires and make my lower jaw have tremors and shake like I am shivering sometimes .
I guess to answer your question yes i have talked with others who had t.n.pain from dental and after 3 - 6 months the nerve settled down and the pain was gone but after a certain length of time one has to look start finding a way to manage the pain with meds and other options . but no T.N. dose not go away on its own I personally do not think there is a cure there are only ways to manage the pain either with meds or surgery of some type.
I do think you should post this in our dental forum here also and maybe get some feed back from people in that forum too. the more info the better. here is the link to our dental forum....
http://neurotalk.psychcentral.com/forum89.html
Bryanna in there she is full of great info .
PLEASE let us know how your apt goes with the neuro this week and keep us updated on things. we are here to help and support each other .
hope you get some answers soon and your pain lessens .
PEACE
BMW

[Illana]

Originally Posted by Burntmarshmallow

hello Illana
how long ago did you have the tooth pulled? most times you should give it 3-4 months to "settle down" .
when were you told you have ATN /TN ??
I think even if a nerve is damaged it will always try to regenerate /re- grow .like with me my nerve is snapped on the lower right and it mis fires as it is trying to heal but it has been 11 years and it just isnt going to happen but the nerve is and always will keep trying to re-generate and re-grow so it mis-fires and make my lower jaw have tremors and shake like I am shivering sometimes .
I guess to answer your question yes i have talked with others who had t.n.pain from dental and after 3 - 6 months the nerve settled down and the pain was gone but after a certain length of time one has to look start finding a way to manage the pain with meds and other options . but no T.N. dose not go away on its own I personally do not think there is a cure there are only ways to manage the pain either with meds or surgery of some type.
I do think you should post this in our dental forum here also and maybe get some feed back from people in that forum too. the more info the better. here is the link to our dental forum....
http://neurotalk.psychcentral.com/forum89.html
Bryanna in there she is full of great info .
PLEASE let us know how your apt goes with the neuro this week and keep us updated on things. we are here to help and support each other .
hope you get some answers soon and your pain lessens .
PEACE
BMW

Thanks so much for your response. I did see the neuro. He gave me a prescription for Lyrica. I haven't started taking it yet- have to get it filled. He said there is really no way to know at this point if this will heal or if this is permanent. He also wante me to get an mri and ct scan. Thanks again for your support. I will keep you posted!