Newly diagnosed with Trigeminal Neuralgia...lots of question

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Hi! My name is Janice and I am brand new to this site. Thank you to all who have already welcomed me.

I was just diagnosed with Trigeminal Neuralgia and have lots of questions. I hope this is the right place on the site to put questions, and if not, please let me know.

I'll try to make a long story short, but I apologize, I tend to be very wordy!

I have been having symptoms that began very minor last November. Felt movements of my face, mouth and tongue. These steadily progressed, becoming worse. Felt movements left side of face, occasionally on right. Began having "tickly" feelings left side of face a few months ago. These became worse and progressed to pain left eye and back of mouth. felt like rear molars were shredding the inside of my mouth.

Everything continued to get worse. I have constant feeling of movements left side of face. At times it feels as if my face is on fire, At others, as if my eye and face are being sliced by razor blades.

Also, my head began to "bob", I felt like it is due to strength of the movements I feel.

I was seeing a psychiatrist who initially thought the problems were due to medication, but as thinks continued to get worse, he told me it was "Conversion Hysteria", a nice way of saying I was "crazy" and that it was all "in my head".

After a month or two of trying to convince myself it was "all in my head", things became unbearable and I made an appointment to see a neurologist. I have seen the neurologist twice. MRI done and it was normal. A week and a half ago, I saw him the second time and he assured me I was not "crazy" and said I have TN and Essential Tremor. He said Tremor is what is causing head to "bob" and tongue and mouth to "wiggle". Said the TN is what is causing the pain and the nerve impulses are what is causing me to feel as if left side of face is constantly moving (moving doesn't exactly describe how it feels, but it is the best way I can explain it). I feel at times as if my left side is being pulled down by the motion.

The doctor started me on Tegretol 100mg twice and day for a week , then 200mg twice a day for a week, then 300mg twice a day until I go back to see him.

Everything just continues to get worse. When the pain is bad, it is nearly unbearable. The feeling of movement is constantly present and extremely disturbing. I also have this terrible feeling of pressure in my face and head. There has been no improvement on the medication but I have only taken for about 1 1/2 weeks. I am not scheduled to go back to see him for another 2 1/2 weeks, and I feel each day, I can not stand this one more day.

I have wanted to read more about TN and Essential Tremor, but have a difficult time sitting and looking at computer screen. I feel constantly nauseated and don't know if it is from the feeling of my head "bobbing", like I am rocking on a boat, from the medication, or from the TN. Someone at another site told me about the book, "Striking Back", for information on TN and I ordered it on Amazon.

I didn't know enough about TN when the doctor diagnosed it to even ask any questions. Plus I was so relieved he believed me, and didn't think I was "crazy", I could think of little else.

The only thing I had heard about TN is the pain. I have so many other strange and bizarre sounding symptoms, like the movement and the pressure, I am wondering if anyone else experiences these things.

I have lots of other little strange symptoms, but I won't try to list them all.

I wondered if you could let me know if any of you experience things similar to this. Also, if you know if it continues to get worse and worse. I would also like to know what has worked for you in treating this "nightmare".

I would greatly appreciate any information and input you may have.

I apologize again for how long this is!

Janice

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I have ATN. I have intense burning, searing pain in the area of my eye tooth on the right side. Sometimes all along the upper jaw it feels as tho someone is pressing hot prongs up into it. My cheek feels as tho it is fractured all the time. My ear and jar ache all the time. The nauseous I think is from the Tegretol, which I take and have only been on since 5-26-11. If I do not eat regularyly it gets REALLY bad. But as soon as I eat I am fine. Also struggled with tiredness at first. I think you would want to give this drug another couple of weeks to reach its full effect. But that said if you cannot take the pain, I would ask your doctor for a supplement to get you thru this time frame. Min

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Oh yeh, I have the feeling of a spider webb on my face frequently throughout the day, I think that may be the same as the tickly feeling that you have.

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Hi Janice.

I have the hot razor blades slicing my eye area as well. I don't have the 'movement' feeling you describe - I have bugs crawling on my face all day (relieved by the correct dose of my meds)

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Good morning,Janice

I'm glad you used the past tense "was seeing" in describing your relationship to the psychiatgrist. For your information, the American Psychiatric Association is now considering abolishment of terms such as "conversion disorder", which are widely recognized to be unreliable labels. The field of psychosomatic medicine is in deep turmoil because there is essentially NO body of validated observational data that demonstrates either a consistent psychological disorder or an effective treatment thereof. So the pending solution will be to mash all of the psychsomatic or "psychogenic" symptoms into one category called "Complex Somatic Symptom Disorder" -- which is essentially just another label for "be damned if I know!" I suggest that you fire your pshrink if you haven't done so already. His advice seems to be badly out of date and misinformed.

This being said, the head-bobbing and nausea that you report generally are not seen as symptoms of Trigeminal Neuralgia. It would appear that your neurologist agrees with that observation. Facial tic might be an early indication of hemifacial paralysis or Bell's Palsy, which have mechanisms in common with TN but affect somewhat different cranial nerves. I would recommend that you also talk again with your neurologist about a disorder called "Torticullis", as well as Essential Tremor and Parkinson's Disease. All are possibilities that need to be eliminated positively in order to develop a treatment plan.

Where are you in the dose curve your neurologist has recommended? With Tegretol and other anti-convulsant / anti-seizure drugs, care must be exercised in building up blood levels gradually. These are powerful drugs with many side effects. If you just can't stand the pain while your blood levels are building up, then call your neurologist office and ask for a limited prescription of sedating pain reliever in the opioid class (Percocet, Oxycontin, etc.). There are other alternatives than Tegretol as well that can be tried after you are sure that Tegretol doesn't work for you at a dose level you can tolerate. The alternatives include Oxcarbazepine and Gabapentin.

Likewise, please describe more specifically, the "kind" of pain you have and the areas of your face and head that are affected. Pain that strikes the entire skull (front and back at the same time) might conceivably be either a mixture of TN and something else like occipital nerve neuralgia... or something else entirely, such as cluster headache. At least you can be reasonably assured that you aren't dealing with Chiari Syndrome, as that would have shown up on your MRI images. Hydrocephalus is harder to diagnose without a spinal tap and pressure measurement, which are not trivial procedures despite being done in doctors' offices.

If your vision is jumping around too much to read the small screen reliably, then please have a family member visit our "Face Pain Info" tab, and print out what you find there to be read to you in sections. The printout will be about 60 pages, and it covers a wide front of issues including among others, the unreality of psychogenic face pain. There is a master index at the top of the piece, to help make navigation easier.

For your own protection, be aware of the qualifications of this posting and the Face Pain Info Tab. I am not a medical doctor, though I am technically trained in information recovery and operations research. I've been supporting neurologic face pain patients with online research for over 16 years, so I'm also not a "young man" (Jackie made me smile with that one!).

Go in Peace and Power

Red

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Minor amendment: "Chiari Syndrome" = "Chiari Malformation". Please pardon my slip.

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I wanted to say "Thank-You" to all of you for responding to my questions. I appreciate all of the information and support you have given me.

I wanted to try to answer Mr. Lawhern with a more specific description of the kind of pain I experience and what areas are affected.

I feel multiple very strange sensations in my face and neck, but I'll focus on the pain. It affects only the left side of my neck and face, with just an occasional "twinge" on the right. It began several months ago, simply as a "tickly" feeling at the nape of my neck and on the left side of neck. I still feel this much of the time. It is sort of like walking through a spider web. I still find myself brushing at my neck or face, because I feel like something is crawling over it. When it is painful, it affects several different areas, not all at once. When left side of neck , cheek, chin, and part of left ear are affected, it feels like a burning, searing, slicing type of pain. Sometimes runs across bridge of nose and lips. When left eye has pain, it feels as if it is being sliced by a razor blade. When this first started, I would run to the mirror to look, because I was certain my eye was being damaged. At times, left inside of mouth, behind rear molars, feels like it is being slashed. I have a very frequent, deep/ache type pain deep within left jaw and behind left ear. More and more frequently I have been having a pressure type pain all of left side of face, almost to top of head, feels like head is in a vise. My forehead does not seem to be affected. I have noticed, placing my face against any firm surface, aggravates all of my symptoms

I wish I could give a better description, but I don't seem to be able to come up with the right words. I was wondering , also, about the "movements" I feel in my face. The neurologist said it was due to nerve impulses that my brain was only interpreting as movement, but I have never heard of anyone else who has experienced this.

I am currenly taking 200mg of Tegretol twice a day. I will complete this tomorrow then begin 300mg twice a day, and continue this until I see the doctor on July 27th.

I will check out the face pain onfo tab. There is so little I know on this subject.

Thank you again for all of the information.

Janice

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Janice, with very minor variations, the description you offer for your pain would probably be quite familiar to medical professionals who diagnose and treat Atypical Trigeminal Neuralgia. The creepy-crawly sensation you describe lines up rather well with a neurologic symptom called "parasthesia" which is fairly often one of the early symptoms for facial neuropathy of all types, including ATN.

The pain "across" the bridge of your nose and lips might be bothersome to some diagnosticians who are pre-disposed to assign a label of "atypical facial pain" instead of "bilateral atypical trigeminal neuralgia". If anybody suggests to you that you have atypical facial pain, I would advise that you immediately challenge the diagnosis with the counter-assertion that there is neither a recognized medical entity of this title, nor a reliable medical or surgical treatment. The term is widely understood to be a diagnostic label by reduction -- sometimes more candidly named "garbage can diagnosis". I've recently been lobbying the members of the Medical Advisory Board of the TN Association, to encourage outright abolishing of the term -- and I've had strongly supportive responses from a number of them.

If you have further questions after you've read our Face Pain Info tab, feel free to post them either in the comment box of that tab, or in separate discussions.

Go in Peace and Power

Red