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Old 02-03-2011, 09:53 AM   #1
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Al Dyob HB User
Anyone have Persistent Idiopathic Facial Pain

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.

 
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Old 10-24-2011, 10:00 AM   #2
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Nayia1 HB User
Re: Anyone have Persistent Idiopathic Facial Pain

Hi there,

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

 
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Old 01-17-2012, 12:37 PM   #3
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ivana75 HB User
Re: Anyone have Persistent Idiopathic Facial Pain

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 .

http://en.wikipedia.org/wiki/Sulpiride
http://en.wikipedia.org/wiki/Clonazepam

Last edited by moderator2; 01-17-2012 at 12:49 PM.

 
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Old 01-18-2012, 10:16 AM   #4
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globalconcepts HB User
Re: Anyone have Persistent Idiopathic Facial Pain

I have same symptoms ..The only thing that has worked for me
is a generic for tegritol called Carbamazepine...ask your neurologist...

 
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Old 10-21-2012, 04:09 PM   #5
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mfogaca HB User
Re: Anyone have Persistent Idiopathic Facial Pain

Hi,

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.

Please, help me with some advices.

Best Regards,
Marcos.

 
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Old 10-22-2012, 06:56 AM   #6
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Randy Dixon HB User
Re: Anyone have Persistent Idiopathic Facial Pain

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.

 
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Old 10-22-2012, 07:16 AM   #7
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mfogaca HB User
Re: Anyone have Persistent Idiopathic Facial Pain

Hi Randy!

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!!!

Best Regards,
Marcos.

 
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Old 05-11-2013, 12:00 PM   #8
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Terlin HB User
Re: Anyone have Persistent Idiopathic Facial Pain

Quote:
Originally Posted by Al Dyob View Post
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.

 
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Old 08-06-2013, 05:45 PM   #9
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Cor0213 HB User
Re: Anyone have Persistent Idiopathic Facial Pain

Quote:
Originally Posted by Al Dyob View Post
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 also have this problem and am at my wits end! I've had it since 2004 and obviously I'm not getting any relief from anything I've tried. I was wondering how your wife is doing and whether she was able to find any successful treatments. If so, please let me know so I can ask my doctor about such treatment. Thank you.

 
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Old 01-29-2014, 11:48 AM   #10
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notadumbld HB User
Re: Anyone have Persistent Idiopathic Facial Pain

I have been diagnosed with PIFP. When I first started having pain I saw a dentist to rule-out TMJ Syndrome, then and ENT to rule-out a sinus infection. That left a neurological reason so saw a neurologist. MRI/MRA/MRV were negative, and there were no abnormal results in the blood tests.

When he told me the diagnosis I cried because I knew there was no surgical option if we couldn't find a combination of medication to help the pain. We are still searching. I am currently on Gabapentin, carbamazepine and Lyrica.

My pain is bilateral, which is unusual, and is a combination of burning, ache, tingling and stabbing pain which occurs in my forehead, temple, cheeks, jaw, chin, tongue, throat and esophagus.

My only relief is sleep, and oddly enough, eating. The pain starts shortly after I wake up and then gets progressively worse as the day goes on.

I am considering a second opinion down as the University of Florida as one of the doctors there co-authored an article for a medical journal about PIFD. I have an appointment scheduled, but have emailed her to see if there would be any point in having her examine my records. I am also seeing a therapist to learn to deal with the chronic pain, and to see if stress might be a cause.

There are days when I don't know how I can live with the pain. But a friend who is going through her third cancer always tells me not to worry about tomorrow and that I can get through this one day. So one day at a time is my mantra for now. I am determined to enjoy life as best I can. I know I will be in pain no matter what so I still schedule activities and just hope the pain won't be so bad I have to cancel. Tonight I am going to the theater to see War Horse, with dinner at an Indian restaurant before the show. But I admit to having some nights when the pain is almost unbearable, and all I do is wish I could be unconscious. That's when things are scary.

I am still prodding the docs to search for a cause, and hope we find a drug combination that works sooner rather than later.

 
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