Hi. I am a newbie of 3 months. I have mainly TN2 and rarely TN1 episodes through branches 2 and 3. I have been on gabapentin 300mg 3x/day,upping it to 4X/day soon. I got past the “foggy head” side effects after the first weeks.
What do ya’ll use for break through pain? The gabapentin helps bring down pain to 2-3 but sometime the pain can get up to 8 for short bursts multiple times a day. I have some hydrocodone that I used right at the begining while the first meds were kicking in, but I really don’t want to rely on it if possible. I thankfully have a full-time job and have a wonderful family to take care of. I need to stay as level headed as possible.
I also suffer from migraines and use imitrex sometimes for it, but my doctor said to try and take that for the severe pain episodes. Does that sound right? I get very groggy when I take the imitrex and just have to nap for hours after I take it. Are we supposed to tough through some of the really bad pains until we take the next dose? That is why I might experiment with upping the number of times I take the gabapentin.
Any suggestions or helpful thoughts on the subject of would be greatly appreciated.
I take Gabapentin too and I've found that even taking 100mg in between helps the pain better but I get more groggy that way but I can still function a bit. I had my Dr. prescribe me the 100mg in order that I can control my intake. I know they say take 3 times a day but I also found that way does not work if the "crazy" pain comes!!
I have also used a warm water bottle and a T.E.N.S. machine that are used and sold in Canada in Physiotherapy offices.
Stay out of wind, turn down the lights, quiet and no stress, hahaha pretty hard to do with 3 kids hey!!
I am always worse off after I have had a visit with my Grandkids, but I do it anyways.
I don't know anything about imitrex, I'm new to this site and I'm so glad to be here learning all these things, also the support of course!
During the winter, I ALWAYS have a warm scarf or else the cold makes my face feel as if it's on fire. But I mainly use a lidocaine gel for breakthrough pain. I use the 5% lidocaine gel (prescription) and when I feel the first ache or shooting pain I slather it on. I get shooting pains in my teeth as well so I rub it along my gums. This particular gel is used for severe burns and dentures. I have Kaiser insurance and they don't carry the patches but the gel works fine for me. However, talk to your pharmacist to make sure you can use it in the mouth. I actually use it for everything. If I burn myself cooking, an ingrown toenail, and insect bites. Like any drug you don't want to go above the max dose. I don't know how much the patches cost but I know the gel is expensive. I only have a small copay for my prescriptions so I have tubes all over the house, in my car etc. But if you have to pay the full amount it's about $80.00 for 1 1/4 oz which lasts a good month or two. This may be a factor in determining what kind of lidocaine you get.
Thanks Cheryl. Yes, anything is hard to do with 3 kids. Definitely more painful episodes when stress levels increase.
Thanks Kc and tkal. Good information tkal about the prices. I looked up the lidocaine gel 5%- amazon has it for about $63. Doesn’t seem too bad. How long does it last reducing the pain?What dose is the prescription one- I wonder what the difference is? I don’t really find much information about the patch. Would it look goofy if I went out in public on my temple and cheek? I still try and go out with the family, esp since the weather is nice in TX right now.
KatThompson4- I have talked to the dr. about upping the meds. Also, we started a trial of topamax 25mg at night, but it didn’t really help with the pain, so we didn’t go up in the dosage like planned.
I had the patches for at home, and the gel/cream for when out. Patches worked for 12 hours -- the gel is every 4 hours.
I felt the patches worked better/longer because it sealed the med into my skin. But I have both.
Even though I do not currently have TN pain ---- I'm having a neck nerve pinch and since the patches last forever, I got one out and put on my neck! Wonderful!
For 3 years I had no idea that you could get the cream on Amazon!!!!
I think I still prefer to get it through the prescription --- some stuff on Amazon isn't what it really is, have to research : )
But I honestly don't what the difference between this (prescription) and the non prescription stuff. It says in the literature that this is ineffectual on intact skin, but it actually works really well on my face, and better on my gums (because it is absorbed better). It takes about 3 minutes to work. I actually found this particular brand on Amazon for 14.95 BUT it is supposed to be only by prescription so the one an Amazon probably is a fake.
One time I had just put it on my face and was laying down. My cat came over and licked my face before I could stop her. Poor thing. She kept sticking her tongue out and tried to wretch. She's fine but for about four hours she had a numb mouth and tongue and was not at all pleased.
Lidocaine 5% sounds great, esp if it only takes minutes to work. I might get it on amazon first to only pay $15 and see if it works. Then get a prescription. My TN1 pain sometimes feels like stabbing in my temples, so hopefully that is not too close to the eye to use. I think I read somewhere that the 5% is supposed to be the highest concentration allowed without a prescription, so maybe it is not fake on amazon.
Hopefully the lidocaine helps because I am actually pretty happy with the relief of TN2 pain with the gabapentin. Just don’t really want to up meds or switch unless I need to. I hope to have a long life of over 50 more years and if I start blowing through meds in the first few months, where will I go from there? I hope that like so many here, I can find some sort of remission and maybe even get off of meds. (I know it is wishful thinking, but I have to have hope right?)
I have upped my meds and it's working so far. I went to a kids b.day party today with family and warned everyone that I was pretty loopy, more than usual anyway. Try as I might I couldn't help but laugh and talk and pick up kids, every now and then I knew I had to just stop and be still, I could feel some pain creeping in. Even though it can hurt laughter really is the best medicine, I had a great time today!! But Momof3 I also know that once spring and summer are here I will be able to lower my dose but I too don't want to be on daily meds for the rest of my life, it can't be good!! Even though Gabapentin makes me groggy and forgetful and unbalanced (have to go slow) and well kind of "dumb" I've adapted and it works pretty good, if I had remembered what fall can do to my TN I would have upped my dose but I totally forgot! I'm hoping that's all it was! Those patches are what I want to try. I couldn't get a hold of my Dr. on Fri. but will try early in the week. The poor kitty cat!! I know whenever I put any kind of cream on me it's my dog that is always trying to lick it off! lol
Cheryl
Momof3 said:
Lidocaine 5% sounds great, esp if it only takes minutes to work. I might get it on amazon first to only pay $15 and see if it works. Then get a prescription. My TN1 pain sometimes feels like stabbing in my temples, so hopefully that is not too close to the eye to use. I think I read somewhere that the 5% is supposed to be the highest concentration allowed without a prescription, so maybe it is not fake on amazon.
Hopefully the lidocaine helps because I am actually pretty happy with the relief of TN2 pain with the gabapentin. Just don't really want to up meds or switch unless I need to. I hope to have a long life of over 50 more years and if I start blowing through meds in the first few months, where will I go from there? I hope that like so many here, I can find some sort of remission and maybe even get off of meds. (I know it is wishful thinking, but I have to have hope right?)
I did another check of lidocaine for $14.95. First. The picture is of fougera lidocaine with the RX ONLY whited out. The picture show 35.44 g but the actual product says 10g and says it's Topicaine.
Here's a different product. 4% but has got good reviews. And it's 4 oz. Excellent price. Just FYI. This says the max non prescription is 4%.
Lidocaine 5% sounds great, esp if it only takes minutes to work. I might get it on amazon first to only pay $15 and see if it works. Then get a prescription. My TN1 pain sometimes feels like stabbing in my temples, so hopefully that is not too close to the eye to use. I think I read somewhere that the 5% is supposed to be the highest concentration allowed without a prescription, so maybe it is not fake on amazon.
Hopefully the lidocaine helps because I am actually pretty happy with the relief of TN2 pain with the gabapentin. Just don't really want to up meds or switch unless I need to. I hope to have a long life of over 50 more years and if I start blowing through meds in the first few months, where will I go from there? I hope that like so many here, I can find some sort of remission and maybe even get off of meds. (I know it is wishful thinking, but I have to have hope right?)
Hi I’m new to all of this as well…I’m about 4 months in! I started out with the stabbing electric pain and I went from Tegretol(Carmazepine) to Trilipel(oxcarbazepine) …the pain never got better on either! My neurologist upped the oxcarbazepine and basically said deal with it! (Smh…I know right) anyway I kind of dealt with it during work hours and cried all the way home to bed. The pain eventually went into a dull shock burning like sensation that is unbearable. After visiting the er twice in one week research finally led me to Atypical trigeminal neuralgia. I am currently on Gabapentin 600mg three times a day and the side effects are crucial…lightheaded off balance dizzy…so I told the dr that the pain was worse…he suggested upping my medicine to 3600mg! The er sent me home saying if the medicine doesnt work surgery may not either! I could really see how you handle it because I’m struggling
…oh I also have the lidocaine mouthwash but it stopped after awhile…hopr this help! !
Atypical TN is harder to treat. As for surgery. ATN does have a lower success rate but you have to put this in perspective. Surgery may or may not help. It may only help from a few weeks to years but however you look at it, it's not a great success. There are many others that have ATN and can guide you about the meds that do better with ATN. I seem to remember that codiene (the stuff in prescription cold medication) does better with ATN but I can't be sure. The other painkillers in that family (vicodin and percocet) although stronger don't help all that much. They don't help with my TN. Also ask about Fentynil (spelling?) patches.
I was diagnosed about a year and half ago but now realize I'd been showing symptoms for years. It's such a struggle. With the pain and with the treatments. I have regular TN and Trileptal worked great. But I was also vomiting up my food everyday. Not a good thing. I will keep this as a backup med though. I'm on Nortriptyline now with klonopin and tramadol as well. I think a cocktail may work better for you but I'm not a doctor. So far the Nortrip works with minimal side effects with some breakthrough pain. Keep doing research to find the best fit for you and this site is an incredible place for information. Also, you may want to start thinking about applying for disability. Of course if you can still work you don't want to apply for Social Security but you need to keep up the paper trail and get current copies of your medical record, names, dates, meds that work etc. Social Security doesn't pay much but if you find you can't work then it's something.
I use to think that I had a low pain tolerance because I couldn't handle a toothache (that toothache was really TN). I had to have a tooth pulled last week and then had the complication of a dry socket. They describe it as extremely painful and it is. But I realized that extremely painful was not as bad as a severe flare up. Extremely painful isn't even in the ballpark. I had my gallbladder out and was up and walking a few hours later and everyone was asking "aren't you in pain?". Not really.
How can I do this for 30 more years? I don't know.
I wonder if 4% or 5% is the highest % on the market over the counter.
Luckily, I don’t feel like I need to file for disability yet. I still need to work for quite a while. Oddly, the pain episodes (that aren’t quite controlled right now) are mainly on the weekends. I think the stress of entertaining 3 kids (8 year old girl and 3.5 yo TWIN boys) gets to me at certain times.
More2loooove- I have read a few things you have posted and I am sorry about the experiences you have had and all the medications. In some ways, I feel so lucky that my pain is not so extremely painful most of the time. My heart goes out to anyone in pain. I feel like the sufferers from TN must have some of the highest pain tolerances of all.
I think I am so new to the diagnosis that I’m still learning and haven’t even though about surgeries. I have reached out to my doctor to try and get the lidocaine gel and patches called in to the pharmacy for me. Luckily so far, I feel like I have a doctor willing to listen to my desire for low doses of meds, and possibly sort of self direct how much meds I need and when to switch or add meds to the regimen. Hopefully she will stay in more corner and provide the help I need. And all from a general practicioner. She said she will help as much as possible and the refer to a neurologist if she couldn’t help or got in over her head. I think a good doctor definitely helps me cope because I know she is listening and understanding me.
I'm on Gabapentin also, increasing the dose as time goes on. It does make me groggy, fuzzy-brained, whatever. Breakthru pain, the only thing my neuro has ever given me is Lidocaine CREAM, and I felt it did nothing for me and it was expesive for someone without insurance. If I am able to get to sleep, that breaks the cycle..Benedryl (diphenhydramine) or if you have any narcotics..they won't help the pain much, but they'll help you get to sleep. Sometimes I'll make a tent out of a large heating pad and put that over my face. I used to soak half my face in the tub before diagnosis!
I don’t know what the difference is between the cream and gel- maybe if they have the same % it doesn’t matter. My breakthrough is morning to dinnertime. Luckily I sleep well (unless one if the side effects of the meds keeps me up).
I take gabapentin 4 times a day and carbamazipine / I have to cut these in half because taking a whole one has way too many side effects. Cutting them in half helps. I have Type II TN. I also take Lortab for the breakthrough pain. When I have one of those "I can't stand this" kind of pain that would normally send you to the ER, I have Demerol which is what they give you in the ER for really bad pain. This stops the pain but also knocks you out and leaves you with a "hangover" type effect the next day. But I guess that's a fair price to pay for stopping the pain you just can't stand. I take meds for depression too. I' have had TN for over 5 years but only knew what it was for 2 years.I have a really great doctor and that helps a lot. He has a web site set up so that all of his patients can email him with questions or requests for medicines or just to say something like I have this new pain . He always replies within 15 minutes. I think he always has his laptop with him. We're now working on my sleep problems without adding any more medicine, if possible. I am dreading the cold weather coming. I have scarves everywhere to wrap around my face and if it's really cold I wear a ski mask. I feel like a bank robber in it but it keeps my face from feeling like it's going the shatter in the cold. I have not tried the lidocaine but my doctor has said if I want to try it he will send in a prescription. Fortunately I have great insurance so cost is not a problem. I think after reading what everyone has said about the lidocaine, I'll email and tell him I want to try it. I'll try anything that might help. I have a lot of problems with my teeth hurting too. I actually had 3 days in a row last week when I had no pain at all. It felt weird to feel normal again. Of course it didn't last but I'm looking forward to having a few more pain free days
Hi Kg, I too am on Gabapentin and you just reminded me that my Dr. did say to try Benedryl for sleep and I do have some and haven't done it yet! I'm so forgetful these days, it's hard to remember everything. I keep a magnetic memo pad on my fridge to write when and what meds I took, so afraid to double up or go without. lol
Cheryl
kg said:
I'm on Gabapentin also, increasing the dose as time goes on. It does make me groggy, fuzzy-brained, whatever. Breakthru pain, the only thing my neuro has ever given me is Lidocaine CREAM, and I felt it did nothing for me and it was expesive for someone without insurance. If I am able to get to sleep, that breaks the cycle..Benedryl (diphenhydramine) or if you have any narcotics..they won't help the pain much, but they'll help you get to sleep. Sometimes I'll make a tent out of a large heating pad and put that over my face. I used to soak half my face in the tub before diagnosis!
Hi kcmustang, your Dr. and my Dr. are total opposites, the highest pain killer he has given me is T4 and that was only until I could get a broken tooth pulled. He insists on daily antidepressants for Fibro pain!!!! I insist on refusing, due to past experiences. I've had Demerol in the hospital twice now for other things and I rather liked it! I could still kind of function and it took all pain away, I have asked for this with 2 Dr.'s and I got the "look" and a "laugh", like that was going to happen. I know the cold and the wind are terrible trigger activators.
Every time I get pain free days I screw up! I get so excited and I'm all revved to do this and that, I do this and that and I'm so happy........then I go overboard and I'm layed up for awhile and then things pile up again, oh well!
I just did it again this weekend and here I am once again praying to God for the pain in my shoulder (tendonitis) and the pain in my neck (osteoarthritis) and the pain in jaw (TMJ) NOT to trigger the TN!!! EEEEEK! All this is on my left side.
I am using a heating pad and a TENS machine and have upped my meds!
Good luck everyone especially this winter!
Cheryl
kcmustang said:
I take gabapentin 4 times a day and carbamazipine / I have to cut these in half because taking a whole one has way too many side effects. Cutting them in half helps. I have Type II TN. I also take Lortab for the breakthrough pain. When I have one of those "I can't stand this" kind of pain that would normally send you to the ER, I have Demerol which is what they give you in the ER for really bad pain. This stops the pain but also knocks you out and leaves you with a "hangover" type effect the next day. But I guess that's a fair price to pay for stopping the pain you just can't stand. I take meds for depression too. I' have had TN for over 5 years but only knew what it was for 2 years.I have a really great doctor and that helps a lot. He has a web site set up so that all of his patients can email him with questions or requests for medicines or just to say something like I have this new pain . He always replies within 15 minutes. I think he always has his laptop with him. We're now working on my sleep problems without adding any more medicine, if possible. I am dreading the cold weather coming. I have scarves everywhere to wrap around my face and if it's really cold I wear a ski mask. I feel like a bank robber in it but it keeps my face from feeling like it's going the shatter in the cold. I have not tried the lidocaine but my doctor has said if I want to try it he will send in a prescription. Fortunately I have great insurance so cost is not a problem. I think after reading what everyone has said about the lidocaine, I'll email and tell him I want to try it. I'll try anything that might help. I have a lot of problems with my teeth hurting too. I actually had 3 days in a row last week when I had no pain at all. It felt weird to feel normal again. Of course it didn't last but I'm looking forward to having a few more pain free days