Which advice would you give to someone who has just been diagnosed with Trigeminal Neuralgia?

Found the right doctor to treat you.

3/17/17 by Debbie K 1050

Don't give up hope.

3/17/17 by Lee 1000

Have someone to talk to or try to find information online. And know that we are many out there and maybe we can keep each other up .

3/17/17 by Tanja-Marie 1340

If my MD, ENT and Dentist all been in communication, it would have saved, a lot of money, teeth, pain, suffering and time

3/20/17 by Joyce Parton 1000

After just being diagnosed, it is important to research the different types of medications and treatment options; and then discuss your options with your neurologist. In addition, online support groups have served to provide encouragement and information to patients, from patients. I would have definitely joined one earlier, had I known I could. Talking with others who have been diagnosed helps make sense of the doctor-speak, and it helps learn of non-medical ways that patients have found successful in controlling their pain.

3/21/17 by Sandy 1052

Go for second opinion before you start medication. Remember it's not end of life. Many of us still lead normal life with medication. There are lot of other options to get rid of pain

3/21/17 by Hema 1000

I would recommend to take it one day at a time. To look into a pain management program in their area, and to track their pain when trying new drugs or just anytime really.

3/21/17 by Heidi 1000

F*nd a Great neurologist/ surgeon. Join a TN support group, Facebook. Find what your triggers are.

5/29/17 by Julie Nelson 700

When you have just been diagnosed, you will need to find an expert neurologist who can provide you with the right treatment for your condition, which mainly consists of an anticonvulsant or a combination of several anticonvulsants. You will also need to ask your neurologist for a high quality MRI scan with contrast (MRA) to look for any possible compressions. You should then ask your GP or neurologist for a referral to an expert neurosurgeon who can interpret the results of the scan, as most neurologists and radiologists do not have the expertise that is required for an accurate diagnosis, especially in the case of blood vessels pressing against the trigeminal nerve. Most cases of TN involve compressions of an artery against the fifth cranial nerve, but compressions can also show up elsewhere, in the posterior fossa area, for example, especially in women. In case of compressions, a neurosurgeon will most likely suggest MVD, which is the best surgical treatment for type 1 TN. If you do not have any compressions, you can still opt to undergo one of the nerve damaging procedures, such as a needle rhizotomy or GammaKnife, which are also quite successful in relieving facial pain. It is very important to obtain a correct diagnosis. Watch out for dentists who diagnose people with obscure diseases such as NICO, which is a highly controversial diagnosis, or osteomyelitis. If infection does not show up in your blood, your white blood cell count is normal and your inflammatory markers are fine, it is not necessary to pull out any teeth, remove an entire jaw bone, undergo a bone curettage or be treated with antibiotics! Do not be tempted to undergo any other unnecessary and costly treatments such as root canal procedures. Pulling out teeth in a person with TN does not help relieve the pain, since TN is not caused by infection. It is nerve pain. You will probably have noticed that taking opioids or regular strong painkillers are not very useful in treating TN. Anticonvulsants work much better for nerve pain and only a neurologist can prescribe those. If I had known all of the above, I would have consulted a neurologist much sooner, preferably one familiar with facial pain. I would have asked for an MRA and for an immediate referral to a neurosurgeon. Instead, I was diagnosed with sinusitis, migraines with trigeminal features, trigeminal autonomic headaches and chronic osteomyelitis before I finally managed to obtain a correct diagnosis... after 30 years of ever increasing pain and suffering. I underwent MVD for type 1 TN with very good results and finally found the right combination of anticonvulsants that appeared to be quite successful in treating my type 2 TN. I will probably need to undergo a needle rhizotomy in the future and have ended up in hospital quite a few times needing Dilantin or lignocaine infusions due to a huge flare up or my medications losing their effectiveness. Treating TN remains a huge challenge for most neurologists!

6/12/17 by Margo 3125

Stay informed. Stay hopeful. Stay alive.

7/29/17 by Christina 1100

dont give up,remission period makes it all worth it

7/30/17 by Poison Yvy 2015

Take the time to accept what's happened, give the medication a chance as the side effects are initially very intense, talk to people, cry if you need to.

8/6/17 by Michelle 2050

See a neurologist as soon as possible. If possible search one out that has treated TN

10/3/17 by Korine 1200

Pray and know your not alone. Call your friend get support. It's going to be hard to live with the pain while a nerve blockers become therapeutic in levels high enough to ease the pain.

2/4/18 by James 2500

Take a deep breath. I remember feeling it first when I read about TN online, that it was a death sentence. The fact that it's called the suicide disease does not help. But I'm here to tell you there's hope! I spent years searching for things to help reduce and manage my pain. Overtime I was able to find them! I've watched people with TN in my support groups on Facebook search for years and finally stumble upon the right thing that works for THEIR pain. Keep searching, never give up hope!

2/23/18 by Alicia 2600

Research, join a support group on line, or if available, in person. Rest, rest, and try not to get overly stressed. I would have researched or joined support group if I had known they were out there.

5/18/18 by Jackie 1800

Believe yourself that you're strong. You're not alone at this. Don't ever feel alone. You're not broken. Your imperfections make you perfect in your own way.

8/24/18 by Eka 100

Don't panic! I found it strange that when I was diagnosed, everyone around me was panicking, yet I was calm and collected, the veritable quiet place in the midst of the storm. The panic that surrounds you is probably due to others' inability to do anything for you as you suffer. You have to be the rock, the eye of the storm, the solitary refuge for others' incapacity to assist. It's not easy by any means. But the calmer you are about this disease, the less stress you inflict upon yourself.There is a great deal to be said for self-reliance. You find out who your friends really are and you discover that you are your own best support system. So read up on this disease, even though the literature is scant. The two best books about Trigeminal Neuralgia are STRIKING BACK! (George Weigel), which details the medical aspects of this disease, and THE NERVE OF MY THIRD TWIN (Eric Killinger), which is an account about dealing with Trigeminal Neuralgia. Both books are available through Amazon.

2/13/20 by Eric 2550

Do not believe everything you read and join a support group

6/3/20 by Nancy 2250

Translated from spanish Improve translation

that tubiese patience

3/3/17 by Ignacio. Translated