Facial pain (Trigeminal neuralgia)

[lifeisgood]

Yes, I am back to report more pain going on in my face. No headaches, just this aggravating intermittant pain I have posted about
for 5 years.  I use Imitrex but the problem is that the 9 per month are not covering it.
I have spoken with many docs about this including my neurologist.  They can't diagnose it . I even had an MRI of my trigeminal nerve and
nothing.

It is on the AN side right now but flips to the other side. I have been on topomax (got really skinny), neurontin etc. I am now on another antidepressant as well. (nortriplene) which doesn't seem to be helping.

I am under much more stress (Autism, divorce and going back to work part time) so maybe that is what is happening.
Yesterday the spasms started on the right side so I am betting trigeminal neuralgia.  This started before my surgery but I was told that the
trig nerve is not impacted??

Thoughts opinions, appreciated.
I wanted to show a recent picture. I am 7 years post An so there is hope for those who are worried about their face.

Take care
Mary

[TP]

I have facial paralysis on my AN side. When I am stressed or tired I have pain.  It is a strange feeling and difficult to explain. I guess it feels like a vice grip on my left side. I don't take anything for it and find that if I lay down and rest my face starts to feel a little better. 

[Mei Mei]

I don't know what to tell you because I have no experience with this.    My only resource right now is Dr. Ducic who helped me with Peripheral nerve surgery.   I wish I knew if he were the answer but it is worth pursuing because that is his area of specialty.
You of course can Private message me anytime.
Hugs to you,
Mei Mei

[CHD63]

Hi Mary .....

So sorry about your facial pain ..... whatever the cause.  I sincerely hope you can find relief.  If it is trigeminal pain, I can sincerely relate to the "awfulness" of it!

I developed trigeminal neuralgia very suddenly 17 years ago (long before the AN).  I can still tell you exactly what I was doing when it suddenly hit the first time.  Blissfully, my family doc diagnosed it very quickly.  He put me on Tegretol, with increasing doses to try to get relief.  When the dose was so high I no longer felt safe to drive, he sent me to a neurologist.  End of story (about six months after diagnosis) is the neurologist sent me to a neurosurgeon who did the microvascular decompression surgery (via retrosigmoid/suboccipital approach) at the brainstem to lift the artery and two veins off the trigeminal nerve that had caused the awful pain.  I woke up pain-free and it has never returned.

I am not a doctor, but to my knowledge trigeminal pain is usually just on one side of the face or the other.  The tri in trigeminal is because the nerve originates at the brainstem, but as it enters the face it splits into three branches (across the forehead, the cheek, and the jaw).  My horrible flashes of pain were just in the upper two branches.

Yes, stress can cause any symptom to become worse and it sounds like you are dealing with several significant issues.  Hopefully your docs will be able to determine the source and give you something to bring relief.

Many thoughts and prayers.

Clarice

[Rhefitzy]

Hey if this is any help, i get a lot of facial pain, but my doctor said it was caused by muscle spasm and it goes away when i massage my face.
The pain does recur but it goes and comes with more massaging.
Its really intense when i first touch my face but gets more tolerable as i hold my hand there.

X

[Mei Mei]

Have you talked with a dentist about making a night guard to sleep with and see if that helps?
Mei Mei

[godftamm]

Have had pain on my right side since I had a stroke on my left side. I just hope it goes away.

[lifeisgood]

Thank you everyone.
I went to a neurologist today and he wants to put me on Lyrica?
Anyone been on this drug? It is for nerve pain and fibromyalgia.
It has so many side effects that I am afraid to go on it.

They also want to do a specific scan of my trig nerve.  He did reference surgery.  Dont' tell someone who had an AN removed that
they may need surgery..
Weighing all the options.

Thanks again.
mary

[Jim Scott]

Hi, Mary ~

My wife has suffered with fibromyalgia for the past 15 years.  She tried Lyrica a few years ago but the side effects were unacceptable and the drug did not help her fibromyalgia symptoms - but her doctor had wanted her to at least give it a 'trial'.  She went back to Neurontin, which is fairly effective for her with few, if any, side effects.  However, each person is unique and because a drug isn't effective for one person doesn't mean it won't be helpful to you so unless you are definitely afraid of the possible side effects of Lyrica, you may want to give it a try.  Of course, that is your personal decision, I can only offer my wife's experience and my opinion...and I'm not a physician. 

Jim

[Janet]

I was on Lyrica 100mg 3 times a day. I had to stop because my face (eyes) got puffy. I was disappointed because it really helped and I liked being on it.

I asked if I could resume it at a low dose.  I now take Lyrica 25 mg 3 times a day. It helps and I do not have any side effects.

I take it for neck pain and some milder head nerve pain. I've tried many different anti-seizure meds and I like Lyrica the best.

[Mei Mei]

Please, Please don't go to Lyrica.   I went to a neurologist and he put me on two months of Verapamil, then one month of Lyrica (no sleep and severe constipation) then one month of Lithium.    None of them helped and only hurt.   It was a waste of time and money.   He sent me to Pain specialist and the occipital nerve blocks were a disaster.    I went for Myfacial Release Therapy and have now started with another Myfacial release therapist for my neck , shoulders and lower skull.    I went to Dr. Ducic and we did the excision surgery which helped a lot for the upper skull.   I have a follow up appt with him on Jan 19 and see if he can help the sub occipital area.    Meanwhile the Myofacial Release Therapist says not to do the Xeomin (Botox for the neck) because it will interfere with the Myofacial Release Therapy and neck strengthening exercises since the injections weaken your muscles so I am having them talk to each other to help me make a good decision about how to proceed.   

I am using Salonpas patches for the neck and shoulders and the spray for the lower scalp.

Please skip the step with the meds and do the therapy and nerve blocks which are diagnostic.   If they don't help, then you need to see Dr. Ducic.
Sincerely,
Mei Mei

[godftamm]

Hi, I'm on Cymbalta 120 mg it works great and not so many side effects.