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I Need Some Advice On Trigeminal Neuralgia

I Need Some Advice On Trigeminal Neuralgia

Can anybody tell me what your 1st symptom of TN was? I am new to this and I am really scared. I had burning by my ear, face and neck last night. Is that TN? Does the shocks usually come after that? Also how long after you start taking meds can you see about some kind of surgery? I just want this to go away so I don't have to deal with it anymore already and mine is just starting. Any advice for me out there?

posted about 4 years ago
A MyMSTeam Member said:

The pain is often described as an excruciating sensation, similar to an electric shock. The attacks can be so severe that you are unable to do anything during them, and the pain can sometimes bring you to your knees.

Trigeminal neuralgia usually only affects one side of your face. In rare cases it can affect both sides, although not at the same time. The pain can be in the teeth, the lower jaw, upper jaw, cheek and, less commonly, in the forehead or the eye.

You may feel aware of an impending attack of pain, though these usually come unexpectedly.

After the main, severe pain has subsided, you may experience a slight ache or burning feeling. There may also be a constant throbbing, aching or burning sensation between attacks.

You may have episodes of pain lasting regularly for days, weeks or months at a time. It is possible for the pain to then disappear completely and not recur for several months or years (a period known as “remission”). However, in severe cases, attacks may occur hundreds of times a day, and there may be no periods of remission.

Symptom triggers

Attacks of trigeminal neuralgia can be triggered by certain actions or movements, such as:
•talking
•smiling
•chewing
•brushing your teeth
•washing your face
•a light touch
•shaving or putting on make-up
•swallowing
•kissing
•a cool breeze or air conditioning
•head movements
•vibrations, such as walking or a car journey

However, pain can occur spontaneously with no triggers whatsoever.

Diagnosis:

Magnetic resonance imaging (MRI) can detect if a tumor or multiple sclerosis is irritating the trigeminal nerve. However, unless a tumor or multiple sclerosis is the cause, imaging of the brain will seldom reveal the precise reason why the nerve is being irritated. The vessel next to the nerve root is difficult to see even on a high-quality MRI. Tests can help rule out other causes of facial disorders. Trigeminal neuralgia usually is diagnosed based on the description of the symptoms provided by the patient.

Treatment with Medications:

Anticonvulsant medications, which slow down the nerve’s conduction of pain signals, are usually the first treatment option.

These include:

Tegretol, Trileptal, Carbatrol, Dilantin, Lamictal, Keppra, Topamax, Neurontin, Klonopin and Lyrica
•Anticonvulsants ◦Carbamazepine (Tegretol)
◦Oxcarbazepine (Trileptal)
◦Gabapentin (Neurontin)
◦Phenytoin (Dilantin, Phenytek)
◦Topiramate (Topamax)
◦Lamotrigine (Lamictal, Lamictal ODT, Lamictal XR)
◦Pregabalin (Lyrica)

•Baclofen (Lioresal, Gablofen)
•Antidepressants ◦Amitriptyline

Tegretol (carbamazepine) is the primary drug used to treat TN. Many physicians believe that the relief of facial pain with Tegretol confirms the diagnosis of TN.

posted about 4 years ago
A MyMSTeam Member said:

Well I'm glad that you got it under control now..its definitely no fun living with side effects..I had taken an Ocrevus infusion well 1/2 if a dose and my side effects afterwards were so bad that my doctor told me not to take the other 1/2.. So now he gave m he a choice of 3 different medications (2 more infusions and then Gilenya and told me to pick which one I wanted to take.. But it looks like Gilenya has lots of side effects to..Seems like they all have them,Unfortunately.

posted almost 4 years ago
A MyMSTeam Member said:

I have had to take tegretol for several years to control sensations in, around, on my ear of bugs crawling. Only med I've found that helps. Medical name is carbmazapine.

posted about 4 years ago
A MyMSTeam Member said:

I don’t have TN from MS, but I have postherpetic trigeminal neuralgia from shingles. I’ve had it for almost 3 years. I don’t know how it usually starts when it is caused by a MS lesion on the trigeminal nerve but I can tell you that mine started with a deep, boring pain near a wisdom tooth. The electric shocks in my ear came a week later, then the burning.
A burning sensation does not always mean TN but if your teeth start feeling like they need root canals on one side or you start getting electric shocks, call your neuro or primary care doctor immediately. You’ll know it when you feel it. Until then, don’t stress it.

posted about 4 years ago
A MyMSTeam Member said:

I had a handful of side effects when I first started with it, but now I have found ways to minimize the symptoms. For example, digestzen essential oil works wonders for any GI issues. My acupuncturist advised me to rub some in and around my belly button at the first sign of discomfort - now if I do that all the discomfort is gone within 10 minutes before it can morph into something less pleasant! The burning ears still happen every once in a while (like once every other month) but it's much more manageable now that I take a zyrtec & baby aspirin every morning before my first dose. We tried to wean me off of that but the burning ears came back immediately. I've changed a lot since I started taking Tecfidera (different diet, CBD, other treatments such as acupuncture, chiropractor, etc.) but I have had no new symptoms in just over 2 years so I'm happy about that and I would assume that it's likely at least partly due to the medication. I have two neurologists. One wanted Tecfidera and the other wanted Gilenya. I asked them to call each other and hash it out to come to a consensus for me. :-)

posted almost 4 years ago
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