Unbearable debilitating pain today. It came in waves. All day. My pain is usually around my left brow bone area and today a certain movement, blinking, or talking too much would cause these horrible stabs of pain that seem to last about 45 seconds or so. I took two Viciden and it didn't seem to help very much. I went to the ER the other morning for the same pain but that also included a unbearable burning pain which now has seem to went away to change into a horrible stabbing piercing one, I'm going to the Doctor tomorrow I hope he will give me something stronger. What should I do? is there something i should ask for. I don't think my doc understands how painful this is. Help!
- I am taking Nuerontin and I just started it Thursday morning. I know it takes awhile to build up in your system. Sunday I was completely pain free so I thought maybe it was working but then I woke up on Monday and the stabbing, crushing ( as u described it well) episodes kept returning in wave after wave to where all I could do was go lie down. Like I said I took 2 Vicodin and it did little it was still probably a 8 or 9. Then, much later in the evening, I decided to take an extra dose of the Nuerontin and it actually seem to make the pain go way down to where it was almost gone. almost. Hopefully, my doctor can give me something else or up the dosage of Vicodin..we'll see. When I called the nurse asking for an appointment she seemed hesitant on the phone when I mentioned more pain meds...jeesh. I mean what are we supposed to do? I have an MRI being done on Friday and then visit with ENT on next Wed to see if this is in fact TN.
I hope that you can get some relief soon and things get better for you.
I would call in for RX lidocaine topical patches today
One day in pain is too many!!!
Kimberly
I am on Neurontin and Triletal and when pain breaks thru I take Tramadol It actually works on the pain and is not a narcotic you might want to try that for the pain
Thanks Kc I will do that. I have heard about the patches.
Kc Dancer Kc said:
I would call in for RX lidocaine topical patches today
One day in pain is too many!!!
Kimberly
The doctor increased my dosage of Nuerontin so we will see she seems to thing this will help. Thanks you Melanie I will ask about it and see if I can get it.
Melanie Armeli said:
I am on Neurontin and Triletal and when pain breaks thru I take Tramadol It actually works on the pain and is not a narcotic you might want to try that for the pain
Pain meds help me and others you'll find here (and lidocaine patches don't). It's different for everyone, remember. I don't recommend asking for anything specific if you're not sure. Call your neurologist and follow their instructions until something gives (you feel better, can't tolerate something they want you to take, etc.)
Pain meds do help many people, and help them tremendously. To make a blanket statement that they don't help is not right. They might not help YOU, but we are all different. And "only anti-seizure meds" is another incorrect statement. Tricyclic anti-depressants are very effective in treating neuropathic pain, as well as muscle relaxants like Baclofen.
We all have different types of TN and different symptoms, and we all responds to meds differently. Please try to keep this in mind when posting on the forums. It's fine to relay your own experiences, and it's much appreciated. But it's always important to understand that just because something doesn't help one person, doesn't mean it won't help the next person.
santafered said:
Just remember that pain meds don't help. I've suffered for 13 yrs. Only anti-seizure meds. But it can take a while for them to build up and everyone is different. There are so many. I've been on nearly all of them. Trileptal worked the brest for about 6 1/2 yrs. Then it stopped. Tried many after that. Your Dr. must have your blood checked often because of liver damage from meds. Good luck. It is an awful inflection for us to have this. No one understands it.
So sorry if I stepped on any toes. I just know I have been thru the ringer with this inflection. I could write a book on it. No one knows that doesn't have it. Not even the doctors. I have also tried anti-depressants to no answer .Not even my family knows how I have suffered. I have always kept it to myself unless I was in public when the pain struck. then it's quite embarrassing when it hits and no one can do anything for you. I do know that most of the meds are expensive and now with being on SS there is not much one can do being that they don't want to pay for a whole lot. So to everyone out there I guess just try anything that sounds reasonable if you are comfortable with the Dr. As one mentioned, to each his own. Just do the best you can and I wish you all the luck in the world. Seems others know more then I do. Thanks.
What dosage of Neurontin are you on your dosage could be to low
. It usually takes a couple days or longer to start working.
Santafered, what type of TN do you have? Most people I know who have ATN/TNP respond really well to the tricyclic anti-depressants, particularly amitriptyline or nortriptyline, but it has to be at a high dose, at least 100mg/day. I've found that most people give up on it too soon -- the doctor's start it at 10mg/day. Also, I've known some people who try different classes of anti-depressants and those don't work as well either, though a couple I know do like Effexor and they say it helps with their pain.
I can't keep it to myself because it's 24/7, so it's always there, it's just a matter of how high the pain is at any given minute. Though I have gotten good at "acting" when I see my mom or something. But at home, I can't help but talk about it all day, because it's bothering me all day.
Pain meds and tricyclic anti-depressants are pretty cheap. But stuff like Lyrica, now that's expensive. I'm not a candidate for surgery, so meds are all I have.
Mikey, since you have TN1, I'd personally try Trileptal or Tegretol instead of Neurontin. From what I've seen, people with "the shocks" respond better to these meds. Sometimes they'll use Neurontin as an add-on. I hope you find some relief!
Hi Mikey, I'm kind of new to this myself. I refused all meds for a long time because I didn't want to be all doped up. I finally started taking the Neurontin, and only took it before bed. This of course didn't work so I added a dose later in the day, after my work day was allmost over. Better, but still didn't work! I finally broke down and took the stupid pill 3 times a day as prescribed, and it worked! I can eat and talk again (yeah). I take 100mg Neurontin 3 times a day, 0.5 Klonopin at night and 1/2 of a Soma at night (I forget the dose). This seems to work for me. The Narcotic pain meds never helped me, neither did the Tramadol or any of the OTC's except Tylenol would help a little (would take the pain from a 10 to a 9). Now I just have to quit eating...after living on milk shakes for so long, I am eating like a person who was just rescued from a deserted island!
I wish you luck in finding the right medication for you. Most doctors don't beleive that narcotic pain meds help for this condition, so you might have a hard time getting a presciption for it, so don't take it personally. Most literature states that anti-seizure meds are the preferred treatment. We have all been in the position were we feel like we have to grovel for our meds, and it's horrible! You are not alone!
Catherine, most of the narcotic pain meds have Tylenol in them, so those should have helped if Tylenol alone helps. Regardless, glad to hear you're getting some relief!
Regular opiates don't usually work very well. I learned that this last March as I kept taking more and more and finally started throwing up. Some people respond well to Tramadol. It's cheap and not a narcotic. I found tramadol doesn't even touch my pain - it's about half and half with people. Some love it and some hate it. I actually take it as an antidepressant and it works well for that. If your insurance is good you could ask to be hospitalized until the pain is under control. IE with a morphine drip or a really large infusion of a different anti-convulsant which can only be done under a doctor's supervision. Personally, I ask for them to remove my brain- but haven't had anyone take me up on that yet.
Nope, not for me. My pain couldn't tell the difference between tylelol and percocet (stupid pain). People react different to meds, it simply did not work for me, not to say it may not work great for someone else. I would rather take the percocet, it's certainly more fun than the seizure meds (lol), but did nothing for the pain...for me.
The doctor just upped my dosage today from 600 mg a day to about 900mgs to 1200..she wants me to feel it out what works best. So far it has helped the pain. Fingers crossed that it continues to do so.
KATTHOMPSON4 said:
What dosage of Neurontin are you on your dosage could be to low
. It usually takes a couple days or longer to start working.
Hey Mikey - how you doing? You will need to ensure you "own" this - your Drs see so many patients and who knows if you get a good one you are lucky, but you need to control your destiny. Meanwhile, for lack of better term, you will need figure out your own personal cocktail.
Personally, the only thing that stopped the pain was tregetrol, but the side effects rendered me useless, which is just unacceptable to me, so I stuck with neurotin which just seems to lower the pain (I can feel little shocks and know that they would have been dibilitating without it). As far as the narcotics (pure pain pills), the heavy hitters just made me so high I couldnt function either, so I take a low grade narcotic named Tramadol with the neurotin which helps "take the edge off" - its almost like a single packet of sweetener in your coffee - doesn't drastically eliminate the pain, but allows you to still function at a high level
Neurotin does the same to me, the pain is like waves up and down the cheek. I won't take it, I take oxcarbazepin 150 mg, which is Trileptal, although if I miss a dose, when I take the next one I get one of those pains then it stops and stays on my lower lip. If I touch the lip it sends a stab all the way to my temple and back. But I keep it under control by putting Benzocain on it through out the day. I also take hydrocodon for the jaw pain. Good luck
Mikey said:
- I am taking Nuerontin and I just started it Thursday morning. I know it takes awhile to build up in your system. Sunday I was completely pain free so I thought maybe it was working but then I woke up on Monday and the stabbing, crushing ( as u described it well) episodes kept returning in wave after wave to where all I could do was go lie down. Like I said I took 2 Vicodin and it did little it was still probably a 8 or 9. Then, much later in the evening, I decided to take an extra dose of the Nuerontin and it actually seem to make the pain go way down to where it was almost gone. almost. Hopefully, my doctor can give me something else or up the dosage of Vicodin..we'll see. When I called the nurse asking for an appointment she seemed hesitant on the phone when I mentioned more pain meds...jeesh. I mean what are we supposed to do? I have an MRI being done on Friday and then visit with ENT on next Wed to see if this is in fact TN.
I hope that you can get some relief soon and things get better for you.
Thanks Albee
I'm doing pretty good actually. I started taking 1500mgs of Neurontin and it seems to be working so far. I hope it lasts. I have only seen an ENT who I'm not all that impressed with. He did an MRI and couldn't find anything so he said it was TN. He didn't explain anyhting about TN ( glad I found this site and did research) just acted like it wasn't a big deal to have it as long as the meds were working. He said he would have put me on Tegretol but if the Neurotin was working that was great. I left and made an appointment with a Neurologist. I think that's the best move at this point. I also called a clinic which I assumed treated TN but they actually only do the surgeries. After an interview over the phone a receptionist called me back and told me two things could happen 1) the pain will return in a month and I'll have to up the dosage 2) It could go int remission. Like I said I mad an appointment with a Neuroligist. Info seems to be all over the map.
Albee said:
Hey Mikey - how you doing? You will need to ensure you "own" this - your Drs see so many patients and who knows if you get a good one you are lucky, but you need to control your destiny. Meanwhile, for lack of better term, you will need figure out your own personal cocktail.
Personally, the only thing that stopped the pain was tregetrol, but the side effects rendered me useless, which is just unacceptable to me, so I stuck with neurotin which just seems to lower the pain (I can feel little shocks and know that they would have been dibilitating without it). As far as the narcotics (pure pain pills), the heavy hitters just made me so high I couldnt function either, so I take a low grade narcotic named Tramadol with the neurotin which helps "take the edge off" - its almost like a single packet of sweetener in your coffee - doesn't drastically eliminate the pain, but allows you to still function at a high level