My wife has been finally diagnosed with PIFP (Persistent Idiopathic Facial Pain). It is very similar to Trigeminal Neuralgia. She has episodes of Electrical Pain, along with crushing pain that is consistent except when she is sleeping. Her doctor is now experimenting with a medication they use for gout and another one for High Blood Pressure that does something to stop some channel that causes pain. We are not sure about all of it, but he is at least willing to try a few things. I will tell you she has been through so much horrific pain. Does anyone else out there have anything similar... Would like to hear from you... PIFP as it is called was once known as atypical facial pain. I have a easlier post on here describing her symptoms...Hopefully there is a light at the end of the tunnel. It is a relief just to get a diagnoses instead of hearing how its psycological.
I too have had electric shocks on the right side of my head which are awful and bring me to my knees and also, for the last 4 years, terrible left sided facial pain from cheek to nose.
I havent been diagnosed as facial pain but i have tried all the sinus treatments and have had sinus xray which was clear. (i am going to ent next week)
Mine stops when i am sleeping too and only starts when I get up and am active. I would be interested to hear how she gets on and hope she is ok x
I can t believe I been searching all around to find someone with exact same symptoms as mine . I ve persistent sharp pain in my face 24/7 for a year now . i ve tried all meds on market for neuorophaty and TN and nothing worked . It s exactly as you say when i sleep it s ok as soon as I open my eye and wake up or few minutes after pain starts and keeps getting worst during the day . i am kinda on the edge of self destruction . Did you by any chance found something in meantime about it , or drugs that helps ?
i had sinus surgery tooth-jaw surgery , I tried Calcium channel blockers and all others beta blockers as you say your wife is goin to try , didn t work 4 me . My pain started after a accidental hit in cheek and it never went away .It in nose in cheek and around eyebrows on R side . How s your pain started ?and yes it getting worst with activity .
LISTEN I M NOT DR . BUT I M CHEMICAL WORKER I PUTTED MYSELF ON MEDICINE CALLED SULPIRIDE , IT S THE ONLY THING THAT HELPED . WITH RIVOTRIL .
I live in Brazil, and unfortunatelly the doctors canīt help my mother until now.
According to the symptoms, I believe that she have PIFP.
She is trying Carbamazepine, Gabapentine, Mirtazapine, and others drugs, and for 8 long years nothing stopped the pain.
Nowadays the pain growth, and she start to use morphine, I know that this is not good.
Some advice will help.
She are very depressed and I am quite crazy.
You are luck you got the diagnosis. I kind of lucked out in getting mine. In the beginning the pain felt most like it was dental with tooth pain and shooting pains that seem to be a result of a bad tooth with possible TMJ involvement. Medications did nothing to help.
I was later diagnosed separately with a prolactinoma, a small tumor that affects the hypothalamus. It wasn't causing any problems but the treatment was a medication called Dostinex or generically, cabergoline. This completely resolved my facial pain. I don't believe it is merely coincidence since I have not taken Dostinex for a couple of weeks and my facial pain is returning. Dostinex is a dopamine agonist, and there are some studies showing that PIFP is a result of problems with dopamie receptors, so I think this is why it helps. I don't know if it is specific to me, but since there are very few negative side effects of Dostinex I would certainly try it. It is very expensive in the US but I get it from overseas cheaply. Good luck, when I was having the facial pain it was hard to just get through the day and sleeping was next to impossible.
Your information is very helpfull to me.
Actually, we canīt got a full diagnosis, the PIFP is a strong hypothesis.
Regarding Dostinex, make sense, because the crisis worsens when my mother is more depressed.
I donīt know if Cabergoline (Dostinex) is avalaible here in Brazil, but Iīll talk to her neurologist.
Again, thank you for your information, I hope that your pain stop and go way, forever!!!
My wife has been finally diagnosed with PIFP (Persistent Idiopathic Facial Pain). It is very similar to Trigeminal Neuralgia. She has episodes of Electrical Pain, along with crushing pain that is consistent except when she is sleeping. Her doctor is now experimenting with a medication they use for gout and another one for High Blood Pressure that does something to stop some channel that causes pain. We are not sure about all of it, but he is at least willing to try a few things. I will tell you she has been through so much horrific pain. Does anyone else out there have anything similar... Would like to hear from you... PIFP as it is called was once known as atypical facial pain. I have a easlier post on here describing her symptoms...Hopefully there is a light at the end of the tunnel. It is a relief just to get a diagnoses instead of hearing how its psycological.
I have this total head presure and numbness,eyes seem out of focus and my hearing is distorted, a hissing sound, my equilibreum is off feel like falling. I don't know if this is what she's feeling but this is driving me crazy.
