Pain disappear gradually?
 

I first noticed my pain while washing my face in May of ’07. I had shock like pain seemingly centered somewhere in my left nostril then running across the top of my left cheek and round the left eye. I discovered the trigger point to be at the very tip of my nose. At first the pain would come/go but after one month it decided to stay whenever a trigger point was touched. Trigger points had increased to left of the upper lip, the left hairline area of the head and the tip of my nose. Pain lasts momentarily then disappears. On a scale of 10, I would classify my pain as a 9. (I’ve had pleurisy that I would register as a l0.)

I had no idea what was wrong so I visited my Primary doctor who immediately diagnosed TN. When Lyrica did not work he placed me on Gabapentin 900 mg per day. He told me if this does not work. he will recommend a neurologist. I’ve been on the drug two weeks and have several side effects but am finding the pain disappears for up to two hours each day. I’m not sure if this is normal when taking this medicine or not. Do drugs cause pain to disappear gradually or suddenly go away?

Thanks,
Marilyn

Don't wait
 

Hi, Marilyn,

You're REALLY LUCKY to have a primary care doctor who is familiar enough with TN to recognize it so quickly. Many TN patients go years before getting a proper diagnosis. But you should see a neurologist anyway to confirm the diagnosis, possibly order an MRI to rule out MS, tumor, or other cause of the face pain (though this first MRI will probably not show an actual compression - it is generally just to rule out other, more obvious causes), and most especially to work with you to find the best treatment. 900 mg/day (I'm assuming that's 300 mg. 3x a day) is a very low dose of Neurontin/Gabapentin and you may need to titrate up slowly to find the proper therapeutic dose for you but should do so under a neurologist's care. These are antiseizure meds that, unfortunately, act on the whole nervous system and will make you feel slow and tired, etc. at first, but over weeks or a few months your body should acclimate at least to some degree. There are also lots of other meds out there to try if the Gabapentin turns out not to be the best for you. The neurologist should explain all the treatments to you and their pros and cons. Be sure to get a neurologist who has treated TN - it's rare enough that not all may have actually seen it.

Get a copy of Striking Back! The Trigeminal Neuralgia and Face Pain Handbook by George Weigel (former TN sufferer) and Ken Casey, M.D., a neurosurgeon who specializes in treating face pain. You can order it from the Trigeminal Neuralgia Association (who publishes it) by calling 800-923-3608 or 352-331-7009 (Gainesville, FL) or by visiting their website at www.tna-support.org (books available at https://www.tna-support.org/storefro...ducts.asp?id=2).

Also, read the sticky threads and the links in them at the top of the forum - Useful Websites and Tips for Newcomers. These will give you an idea of what other meds and treatments are available and others' experiences.

Do take care and let us know how you make out.

Jean

JeanC, what would we do withouth you gal!!! You're awesome to post all those phone numbers, websites, and also mention the book which many of us refer to as "The TN Bible". :hug:
900mg of the Neurontin/Gabapentin is low, but still glad that it's offering you a bit of relief from your pain. I worked my way up on it when I first started taking it Dec. '97 to try and find an amount that would control the pain.

Wishing you much success,
Hugs and prayers,

Marilyn (yes, I like your name too! LOL) Many know me as Corky which is my parrot's name

Jean, thank you so much for your kind and informative post. My primary has told me he will recommend a neurologist if the meds he prescribe do not work. I understood if they did work he would handle my case himself. However after today I'm not sure he can.

This morning I had the worse pain I've ever had involving the entire left side of my face. I can't understand why it changed all of a sudden. Each time I've smiled, coughed, talked, grimaced, yawned or involved my left cheek in any way, I've had excruciating pain. My meds have not helped and I'm dreading the night. Is this normal for the pain to suddenly change from bad to worse AND increase in area.

I've made note of the book and plan to order. Thank you again.......Marilyn

Marilyn, thank you for replying and I like your name also (smile). I am happy to meet you and look forward to reading and replying to your postings. The 900 mg of Neurontin was beginning to help I thought but after today I'm not so sure. Thanks again for taking the time to reply to my post...........Marilyn

There really is no "normal" for TN - it's rare. You may be having a "flare-up". Go to a neurologist. The gabapentin may help you but you're at the starting dose (usual adult dose for TN is between 600 and 2400 mg/day - http://health.utah.gov/medicaid/phar...ate%202005.pdf) so if it's not controlling the pain, your doctor should have increased it by now. Don't increase without a doctor's guidance - it's an antiseizure med and you need to titrate up slowly or it can cause seizures and you need time to acclimate to the side effects. Once you hit the right dosage, you should feel the relief right away. And once a neuro gets you on the right med and the right dose, he/she can then advise your primary care doc how to carry on with it. Call your doctor and ask about increasing the gabapentin or seeing a neuro ASAP. You don't need to suffer.

TN can have remissions and flare-ups. Read the websites - especially TNA and U. Manitoba - they're good places to start. Start a "pain diary" as described in the Newcomers thread and take that with you to the neuro when you go - it will help a lot. TN is diagnosed mainly on patient history and description of pain.

Jean

Also
 

Here's a tip sheet from the TNA to help you prepare to see a neuro -

Making the most of your consultation with a Healthcare Provider

Jean, thank you for your kind response and the information provided. I am sorry to be slow in responding. My husband has been ill and I’ve had my hands full. We are still working (self-employed) and sometimes it is overwhelming. I read the items you suggested and made a copy of form to ask a neurologist whenever I am directed to one. My primary has increased my meds to 1200 per day. At first they worked somewhat but now I’m beginning to have more random pain. I’m going to call him on Monday for advice.

I had hoped this website was one where I could converse with others regarding this condition but I think I may have been mistaken. I’m feeling fairly alone right now and sharing complaints and stories with others that have this same condition would help me a great deal. I am sorry if I have caused you extra work by responding to my repetitious questions. I’ll look around for a site more suited to my needs. Thank you again……..Marilyn

Good advice from other TNers
 

Dear Marilyn:

I read all the postings in response to yours. I think that you are getting excellent advice and recommend that you re-read them all. They all know what they are talking about. It is easy to get discouraged with this very serious condition. I too think you were very lucky to get diagnosed right away
and did not go through a long time of wondering what was wrong with you.

So please keep reading and posting on this Forum. There is much very sound advice here from people who are experienced in dealing with TN.

Shirley H.

Shirley, I have misunderstood this forum. I thought it was for support but find it is for advice. I have 3 doctors and most likely four very soon. I can get all the advice I need from my doctors. It is the daily hour by hour living with this condition that I am interested. What do you do during flare-ups to help alleviate the pain? Does your pain pop up in other sections of your face then go away? I can read books, pamphlets, and brochures on these questions but nothing beats talking with others that are actually living it. That is what I thought this forum was about. It was my misunderstanding and I’m sorry to have bothered anyone. By the way, I have had this condition since May and only diagnosed in August. I think that is a long time, especially when in pain, to wonder what is wrong with me. My Pulmonologist treated me for sinus problems for 3 weeks before referring me to my primary doctor. It is my understanding, in my area, that neurologist only see patients when treatment plans have been exhausted and then it may take 2- 3 months to book an appointment, thus the reason for not seeing one immediately.

Marilyn, again thank you for a kind and considerate post.

My face jaw mouth teeth head eye pain hit me in 1999 after a semi truck plowed into me.
I did not find any website or persons or info about t.n. and facial pain for a good LONG LONG couple years I think end of 2001 or in 2002. right around the time I was running out of meds to try and options for anything of help for this ugly ugly "illness".
when I did find websites and other people It was like there is more I am not alone!! Peoples posts told of some of the things I had felt, had thought or meds I had been on and I wished I had found these sites and peoples posts before then because the feeling of all alone was the worse issolation back durring that time. I couldnt even find anyone who had a broken jaw before to learn what to expect durring being wired up or unwired . 2 times in row for me plates the 2ed time round.
even still 7 years I find few hell I havent found anyone who has come down the road the same way I had. I am not on any meds for facial pain( since 2003 ) I cannot have any surgeries (m.v.d., gamma never blocks... ) so pretty much I am useless for helping anyone for support on that side of it unless they are going to have a plates put in to hold jaw together , a neurostim/p.e.n.s. inplanted for pain or they are really really depressed because those things I have gone threw. I was on many many meds but those years are sooo foggy and head injury cant recall all that much other then being a sad zombie veggie shell of a person.
One thing I do believe is that I am the LUCKIEST .I can talk without moving my jaw or mouth at all . smiling is a diffrent story :p I have learned to do many things like before only you learn to do them diffrent then before. I am lucky I did not have too long of a road to find help 3 years not bad from start to finish. I am lucky I am not on meds . I am luckiest for my neuro stim. and my family I know someday I may not have this luck my leads may slip or gosh countless things!!!!! and that is why I lurk and try to post things that I hope and pray helps even just a tiny bit. because someday I may need it back ..need info or help or understanding or just to know I am not alone.
you probly should go search down and find a support group I know that we have local chapters around the country in mosts states for t.n. . Jean gave you some exellent sites and info I think a support list can be found at the t.n.a. site i think????. also search groups on yahoo. many people have their own web groups for that day by day support thing or they have a couple folks they have met by posting and have traded emails.
I DO SO WISH I COULD HELP MORE! Dont give up I know for sure you can find daily support coping with this!! I will search threw the items I have and see what I can find that may help.
peace peace
BMW

:grouphug:

Hi Marilyn

You are really lucky within the unlucky group (who has TN like us is unlucky) because you diagnose the disease in the very beginning. I have this since 1992, like what happened to others, i went to dentist, dentist can't diagnose and recommend me to ENT, but i don't have money to see ENT so i just leave it and the pain will come periodically, at first pain remain few months then stopped for few months then pain again, but it getting more and more serious, until 3 years ago, i went to ENT, he did a CT scan and say is Sinus, go operation, and the pain still remain, come and go. until i was in China 2 months ago, the pain came again, can't even sleep, then go for doctor and the recommend me to meet up with a neurologist, and he disgnosed that is TN. I doubt on it and search internet for more info and read that, the pain described in internet for this disease is exactly what i experienced! I go for another neurologist after i back to my home country and now start for medication. She gave me very low dose, as follow:

1. Gabepentine 300mg per day
2. Amitriptyline 12.5mg per day
3. Ultracet 37.5mg per day
4. levetiracetam 500 per day

I wish the expert here can give me some advise whether this dose is too low? I need to go back to China (I work there) soon and will go to see the neurologist again next week, just worry if my pain can't cure this week, when back to China, I have no neurologist to advise me there. Thanks in advance

TN and Pleurisy
 

I have been diagnosed with TN and pleurisy too. I feel like a rare patient, in that I feel like my TN is caused by salivary gland issues that were caused by radioactive iodine treatment for Thyroid cancer. Unlike others replying to this thread my doctors don't help or support me in the least for my TN. I think they could, but it would take them longer than 15 minutes per visit and to coordinate with an ENT specialist familiar with RAI. in short I feel like I have slipped through the medical cracks. Like burnt marshmallow I have developed my own coping mechanisms. One thing I do is hold that side of my face immobile. You can actually see this in photographs of me. The other strategy I hit on is to go to sleep on my painful side. When the muscles relax I get a rush of spit that's been trapped up there all day. This only happens once I drift off to sleep. When I wake up on my wet hanky, I then sleep on the slightly more comfortable side.

But concerning the pleurisy, I think it really sucks. Apparently I made it act up by getting the Pfizer COVID vaccine booster. Still trying to learn some more coping mechanisms. As usual there is almost nothing medicine can do for it.