Does anyone know the difference between pifp and type II trigeminal neuralgia? Here is one definition of pifp:
Persistent idiopathic facial pain (PIFP), originally known as atypical facial pain, refers to pain along the territory of the trigeminal nerve that does not fit the classic presentation of other cranial neuralgias.[1] The pain is usually of long duration, lasting most of the day (if not continuous), is unilateral, and is without autonomic signs or symptoms. It is described as a severe ache, crushing sensation, or burning sensation. Upon examination and workup, no abnormality is noted.
This sounds like type II TN to me. I'm just trying to sort it out, so if you can help me, I'd appreciate it.
Also helpful will be the link the TN Fact Sheet from our main page. Fair disclosure: I wrote this fact sheet for the US National Institutes for Neurological Disorders and Stroke (NINDS). The definition you've come across is indeed equivalent to what is called "Atypical TN" or more recently "Type 2 TN". Many cases of both major types of TN are indeed "idiopathic" in the sense of being traceable to no known or definite cause. But neither the term "persistent idiopathic facial pain" nor the term "atypical facial pain" is precise or grounded on well established principles of cause and effect. The International Association for the Study of Pain is still arguing over terminology, even at this late date. The Medical Advisory Board of the US TN Association has stated that Atypical Facial Pain is equivalent to "facial pain of obscure origins", and has nothing whatever to do with either mental health factors or bilateral pain occurrence.
Thanks SoOoOConfused and Red. I have to say, the more I read about Type II (I'm squarely in this camp), the more discouraged I get. I was on 1800 mg of gabepentin, which didn't work, so my doc has put me on Tegretol, which I don't think is working. I don't want to live my life drugged and in bed, but that's happened more and more . Do I go on disability? Do I try to work, with an extremely foggy head and quite literally stoned on the meds? What does everyone else do? Is there a "normal" way of living with this disorder? If so, what should my normal be? I don't want to give up on my current ambitions, "climbing the ladder" life. Is it giving up if I try to go on disability? I'm not working outside of the house right now (I'm caring for my in-laws). Should I push to get a job in my field (higher education), or should I give up on my career?
Red gave the most logical and researched answer to your question. I had/have both TN and TN2, which I had an MVD for and it got rid of most of the pain. I still have some pain in my teeth along the lower jaw line at times. Long story short, I went to Dr. Jeff Brown in NY and had the surgery. He refers to all pain along the trigeminal nerve as TN. He does not differentiate like other doctors/neurologists do. Dr. Brown feels it is all related so therefore he does not distinguish between the two and he specializes in the more "atypical" pain. Dr. Brown, as well as myself, Red and some others on here don't like the term "atypical" because too many doctors use it to infer that we are nuts, of which I may be crazy at times, but surely not nuts, lol.
Oh Beth. I am currently in the struggle for a normal life too. I have ATN (V1 branch) and have constant burning headaches. My symptoms came on suddenly 3 years ago for no reason. My journey has been long and difficult. I have tried pretty much every drug out there, numerous procedures (MVD, blocks, Botox, IV's for pain, etc.). My life, post MVD, has been better since before the surgery I was going in for IV pain meds about once a week for severe pain. I still struggle each day. My first Botox was 8 weeks ago and I have had some success with it. The docs say that it may take 2-3 treatments to really see lasting relief, so....I keep on hoping. Whatever you do, don't ever let yourself think that you have done everything and that you are just stuck with the pain. Living with this pain has changed my life. To be honest, I fear the future. I am only 43 years old. Will I have a headache until I die? This thought crosses my mind too much. I try to only live one day at a time. To look ahead causes fear and anxiety, so I am choosing to live one day at a time. Sometimes one hour at a time. I am grateful for those hours when the pain subsides a bit. I will not let this thing beat me, though I have had to adjust my expectations. I realize that I still have a lot to contribute to this world, but I may have to do it in a different way than I had planned. I AM NOT my disease. I will keep up the fight and in the meantime be grateful for all of the other blessings that God has given me. Good luck my friend.
Wendy, at which hospital does Dr. Brown work? I need a doctor who specializes in type II. Thanks for your response, by the way.
Flute Cutey, are you working right now, or are you home, dealing with the disorder? Thanks for your response. It's so nice to feel like I'm being heard. I'm almost in a panic about this. I've had TN for about a year, but it's gotten much worse in the past couple of months. And of course, this comes at a time when I need to be making a decision about going back to work or not.
Beth - I am lucky enough to be able to work out of my home part time. I am a real estate accountant. I won't lie. It has been very difficult to work, even at home. I am lucky that I have co-workers (we are very small company) who treat me like family and have literally picked up my responsibilities when I was really, really bad before my surgery. I also have had problems concentrating on tasks for work since many times I have been feeling loopy from the drugs, or because I am totally exhausted due to the meds. In fact, I just had to lie down and take a nap this afternoon since the meds kicked in full force. I honestly don't know how I would have been able to work out of my home through this experience. I have just been to sick. In addition, I have the many doctors appointments and procedures that have taken up so much of my time. As I said earlier, I am still fighting this thing so I am still trying to adjust to new drugs and their side effects. Most days I have to take Tramadol and 1-2 Percocet for the pain. I have become so used to the Percocet that I can function pretty well while I am on it. My head is usually pretty clear so I can complete my job expectations. Some days though, I just feel terrible all day. I wish I could give you a better outlook about working, but I thank God every day that my family is financially fit enough so that if I don't work, we can still pay the bills. A supportive spouse has been a lifesaver too.
I also am glad to find a friend like you who understands what I am going through. It is a lonely battle that we fight every day. I am lucky to have wonderful doctors who really care about me, but it took me 6 doctors to finally get diagnosed and believed. My email is ■■■■■■■■■■■■■■■■■■■■■■■■ should you ever want to talk again. Good luck!
Fair warning on people like us with "Type 2" or ATN, or whatever you choose to call the 24/7 burning pain. While there are no hard & fast rules (everyone's body & medical situation is uniquely different), Tegretol is not usually effective for ATN; only those with typical or Type 1 TN. Because people with Type 1 & Type 2 have different presentations, most professionals in the field believe they have different causes. Also, many neurosurgeons who specialize in TN will not do "destructive" surgical procedures on Type 2 patients (those with the constant burning pain). Rationale is that ATN is thought to be the result of some unknown (or sometimes known) damage to the nerve & that additional "destructive" procedures like Gamma Knife, radiosurgery, "balloon compression" surgery, or even MVD are typically not helpful b/c they can further damage the nerve & make the pain worse (though every one is different). So invasive procedures are not nearly as helpful for us as for those with Type 1 TN.
My personal experience was that gabapentin helped initially, but I needed ever-increasing dosages. I was able to get some relief through acupuncture & hydrocodone (it didn't take the pain away, but often brought it down to more tolerable levels). I tried several other meds, but finally was put on Lyrica & then amitriptyline. After more than a year of experimentation, this combo seemed to help me.
Just do your homework before doing anything invasive. I wish you the best of luck.
MRL - Your story sounds identical to mine. I am just now ramping up on amitriptyline and Lyrica. What dose are you taking of these two drugs? Just wondering, since I am on 75 mg (trying to go up to 100mg) of Amitriptyline and 300 mg (trying to go up to 500 mg) of Lyrica. I am still having a lot of pain each day. I too had luck with Gabapentin for one year, but the effects totally wore off.
mrl said:
Beth,
Fair warning on people like us with "Type 2" or ATN, or whatever you choose to call the 24/7 burning pain. While there are no hard & fast rules (everyone's body & medical situation is uniquely different), Tegretol is not usually effective for ATN; only those with typical or Type 1 TN. Because people with Type 1 & Type 2 have different presentations, most professionals in the field believe they have different causes. Also, many neurosurgeons who specialize in TN will not do "destructive" surgical procedures on Type 2 patients (those with the constant burning pain). Rationale is that ATN is thought to be the result of some unknown (or sometimes known) damage to the nerve & that additional "destructive" procedures like Gamma Knife, radiosurgery, "balloon compression" surgery, or even MVD are typically not helpful b/c they can further damage the nerve & make the pain worse (though every one is different). So invasive procedures are not nearly as helpful for us as for those with Type 1 TN.
My personal experience was that gabapentin helped initially, but I needed ever-increasing dosages. I was able to get some relief through acupuncture & hydrocodone (it didn't take the pain away, but often brought it down to more tolerable levels). I tried several other meds, but finally was put on Lyrica & then amitriptyline. After more than a year of experimentation, this combo seemed to help me.
Just do your homework before doing anything invasive. I wish you the best of luck.
Hmm Mel and flute cutey. I was on gabepentin for a year, ramping up to 600 mg 3 times a day. When that wasn't working, my doc switched me to tegretol, and she just increased the dosage to 400 mg twice a day. I'm also on tramadol, but I have to be careful because I'm also on an ssri. I asked for vicodin, but she says she doesn't do vicodin for trigeminal neuralgia. So I'm down to two and a half vicodin for breakthrough pain and I've packs on my head (in bed). I'm the caregiver for my father-in-law with Alzheimer's and my mother-in-law in a wheelchair and with lots of health issues. I'm the cook, housekeeper, taxi driver, and person who has to be present for all appointments.
How in the Hell am I supposed to do all of this?
Plus, I have no health insurance right now. I just called Massachusetts General Hospital to see if I can see a neurosurgeon there. They won't even see me without insurance.
Sorry ... I started to spew my frustration.
Anyway, my neurologist here says if the tegretol doesn't work, the next step is surgery. But she's only seen me twice and just found out today that I have Type II.
What's the next step? Back to gabepentin? Convince her to give me vicodin again? Spend my life in bed??
I am going to give you a hint that helps me a lot. You mentioned ice bags in bed. I have several freezer ice bags that I strap onto my head with a bandana (I have forehead pain). I walk around the house like this a lot of the day. I also use the essential oil called Past Tense. I roll that stuff on and my pain really goes down for a while. I use it about 5 times a day. You can buy it on Amazon for about $20. It lasts 4-6 weeks depending on your use. It has been a lifesaver for me.
I also am on Tramadol, but I usually end up using 1-2 Percocet per day. The Gabapentin, as I said in my earlier post, lasted about 1 year. I was on 3600 mg/day, then I got horrifically bad. So bad that I was going in to get IV pain treatments for my #10 pain about every 6 days. I ended up with an emergency MVD. The MVD has helped some. I have never gotten as bad as I was before. It will have been a year in June since the surgery. I have never used Vicodin for the pain.
I share your worry about doing it all. I have 4 children (ages 13-21) and my husband travels 4 days a week. Some weeks I don't know how I make it through, but by taking it a day at a time, I somehow manage. I am so glad that there seems to be someone out there like you that is going through what I am. The thought is somehow comforting. Lora
Beth said:
Hmm Mel and flute cutey. I was on gabepentin for a year, ramping up to 600 mg 3 times a day. When that wasn't working, my doc switched me to tegretol, and she just increased the dosage to 400 mg twice a day. I'm also on tramadol, but I have to be careful because I'm also on an ssri. I asked for vicodin, but she says she doesn't do vicodin for trigeminal neuralgia. So I'm down to two and a half vicodin for breakthrough pain and I've packs on my head (in bed). I'm the caregiver for my father-in-law with Alzheimer's and my mother-in-law in a wheelchair and with lots of health issues. I'm the cook, housekeeper, taxi driver, and person who has to be present for all appointments.
How in the Hell am I supposed to do all of this?
Plus, I have no health insurance right now. I just called Massachusetts General Hospital to see if I can see a neurosurgeon there. They won't even see me without insurance.
Sorry ... I started to spew my frustration.
Anyway, my neurologist here says if the tegretol doesn't work, the next step is surgery. But she's only seen me twice and just found out today that I have Type II.
What's the next step? Back to gabepentin? Convince her to give me vicodin again? Spend my life in bed??
A couple of observations, if I may. Experience does vary between patients, but the following has been my observation from talking with over 5,000 patients during the past 18 years. (1) MVD is not a destructive procedure, at least not on purpose. Surgeons do make mistakes, but any destruction to the nerve with this procedure is a mistake, not inherent in the procedure itself. But like everything else, it's less effective in Atypical forms of the disorder -- like maybe a 50/50 shot, and more likely to generate positive results if Typical TN has ever been an element of your pain.
(2) Tegretol does sometimes moderate Atypical pain. But not nearly as often as it helps Typical TN pain. The second line of defense in Atypical TN is the class of meds called Tricyclic Antidepressants (TCAs). These include Amitriptyline and Nortriptyline, plus about 10 others. The third line of approach is mixtures of meds having different action. For instance Tegretol with Baclofen, Flexeril, or low-dose Valium. Or one of the opioid meds with a TCA or anti-inflammatory med. It's very much a try and observe outcomes deal. And as nearly as I've ever been able to see, there is no one size fits all answer in medications for either Typical or Atypical TN.
Thanks, Red. Any sense of how long it might take for Tegretol to work with Type II? That's all I'm on right now, and she doesn't believe in giving Vicodan or Percocet for TN. As you can imagine, I'm really miserable these days, spending my time in bed with ice packs on my head. I'm miserable enough to have a good crying jag every day and to feel really hopeless.
Beth
Oh, the 50%of the time MVD doesn't work for Type II, does it cause problems? I mean, is it worth a shot?
I started out at very high doses, but the side effects were problematic. over a period of about a year, I tried to move to different meds & bring the dose down. it took a long time before I was able to do that, but now I am on only 50mg Lyrica & 20-30mg amitriptyline. but I was also doing a ton of other things at the time: ultrasound therapy, DMSO topically, acupuncture & the P-Stim device… I threw everything at the problem short of invasive procedures. so I’m not sure what combo helped get me to a better place. and as we’ve said all along, everyone can respond very differently to various treatments, especially since the cause of ATN is often unclear. I really do wish you the best, & don’t give up! it took me a long time to get to a more livable condition, & in the interim, I just really wanted to die.
Your story sounds identical to mine. I am just now ramping up on amitriptyline and Lyrica. What dose are you taking of these two drugs? Just wondering, since I am on 75 mg (trying to go up to 100mg) of Amitriptyline and 300 mg (trying to go up to 500 mg) of Lyrica. I am still having a lot of pain each day. I too had luck with Gabapentin for one year, but the effects totally wore off.
Sorry, Red. That was more for MRL and flute cutey. I really wanted to respond to them, but I'm withdrawing from gabapentin, and I thought I was going to scream. Add that to the pain from not being on any helpful medicine, and I just decided it was easier to offer my number than to post any replies.
Generally if Tegretol is going to work for either type of TN you'll see effects within a month and at dose levels below 800 mg/day. MVD also has risks, just as other surgeries do: loss of blink reflex and tearing (rare), facial numbness (more common), occasionally anesthesia dolorosa, So there are no guarantees with ATN or TN. You are best advised by a neurosurgeon who is closely familiar with your particular individual symptoms and the course of development of your pain.
Unfortunately, general practitioners and neurologists are under unrelenting pressure to dry up what is perceived as an "excess" of narcotic meds being used by people who "could" (somebody tell us how?) get better results without narcotics. There is a real problem in thousands of drug overdose deaths. But this is in my opinion NOT a real solution. Somebody is eventually going to have to sue the DEA for malicious malpractice against pain patients.
Regards, Red
Beth said:
Thanks, Red. Any sense of how long it might take for Tegretol to work with Type II? That's all I'm on right now, and she doesn't believe in giving Vicodan or Percocet for TN. As you can imagine, I'm really miserable these days, spending my time in bed with ice packs on my head. I'm miserable enough to have a good crying jag every day and to feel really hopeless.
Beth
Oh, the 50%of the time MVD doesn't work for Type II, does it cause problems? I mean, is it worth a shot?