Hi Barbara. I agree with Sheila. The rash is not a good sign. Check with your doctor. When I was first diagnosed, tegretol was prescribed. The next day I had a rash and temperature. Your rash doesn’t sound as bad . But check it out…
Hello,
I've been on Lyrica for three weeks now on top of my other medications. I was the one who asked my GP for a prescription to it from research I had done on the net myself. He had a bunch of sample boxes of lyrica and said he didnt have many patients to give them to so gave me 4 ! Lyrica (pregabalin) is better for ATN pain than gabapentin but only slightly id say. It feels the same the way it warms over your cheek as the medication kicks in.
There have been no serious side effects so far, except ive noticed my speech is slurred. I can live with this.
Id recommend lyrica except for the cost !!! in australia 48 x 150mg tablets is $110 ... This is because pfizer has the patent till at least 2013 and they can charge whatever they want for it.
ive yet to try opiates, but im heading that way fast. Have my pain management programme in July
I forgot to add that one of the side effects im experiencing from lyrica is vivid dreams... wow !
I wake up not knowing which is reality thats how real they are. I dream a lot normally, about 1 every 2 nights. But now my dreams are super real haha everything has so much detail and there is a distinct timeline to them. They dont just jump from scene to scene. It flows now
a side effect I can enjoy for once ! unlike diarrhea, dizziness, nausea, trembling hands, memory loss, numb extremeties, slurred speech, stuttering ... to name a few
Working w/ my neuro, I have been steadily decreasing dosages of Carbatrol, and increasing Lyrica dosages. I am now completely on Lyrica and nothing else, as a day to day TN preventative. As I've said before, I do suffer some side effects, such as a little blurred vision and some dizziness, but it seems to be an effective drug for me. I do have constant sensitivity/pain in a left lower molar, and the pain tells me if I ever miss a dose!
I'll keep y'all posted on the effectiveness of Lyrica as time progresses. So far, so good.
Wow, Brian, you are very blessed if Lyrica is the only thing you need. I am very happy for you!
having a reaction to a medication can be the worst because :
a) you cant take the medication so you dont get the pain relief
and
b) you get the reaction
I am currently going through this and cant get into to see my neurologist as he is booked out all next week and then is going away... So Im going to head to my GP and discuss it with them. But to be honest his understanding of ATN is that I have TMJ, teeth or sinus problems. I have made a list of medications discussed by people on this topic and other ones to do with ATN.
Luke,
I wonder if your GP understands the concept of "Trigeminal Neuralgia"? That one is in most medical coding systems.
Have you explained to him that ATN is a variant of the same disease? Perhaps you have your diagnosis sheet from your Neurologist?
Remember, you are HIS customer and you or your insurance are paying for HIS services and it is HIS responsibility to understand your medical condition. I hope you carry this mindset in there with you when you go to see your GP. I do not mean, "get rude". But, the way that you will feel until you can see your Neurologist is in his hands.
It is a good idea that you printed some of the discussions and lists of medications.
Good luck!
Stef
Luke said:
having a reaction to a medication can be the worst because :
a) you cant take the medication so you dont get the pain relief
and
b) you get the reaction
I am currently going through this and cant get into to see my neurologist as he is booked out all next week and then is going away... So Im going to head to my GP and discuss it with them. But to be honest his understanding of ATN is that I have TMJ, teeth or sinus problems. I have made a list of medications discussed by people on this topic and other ones to do with ATN.
Thanks Stef,
I always appreciate your input :) I read this after I visited the GP unfortunately though. I decided to visit another GP at the same practice and im glad I did as she is very sympathetic to my case and has an understanding of pain management regimes :) And she doesnt just talk about pain, she gets you talking about your life and what you are interested in... she understands that pain management isnt just about medication. That having a self worth can often be one of the biggest pain reduction methods there is.
I hope things are feeling better with you this week
Luke
Hi Stef,
I wanted to let you know that I have tried all the "typical" drugs as well. They all had such extreme side effects I had to miss over two months of school. (I am an elementary school teacher.)
Recently, I agreed to have an MVD, and the pain came back almost immediately. Since then, it has even gotten worse. I have moved across the county, (home) and had the chance to see some great docs. Next week I am seeing a pain specialist. I wanted to ask your advice before I go... The ONLY thing that works for me are narcotics. I agree with you that I would rather be dependent on them that have a poor quality of life, especially because I am only 29. I teach 4th grade and can't even make it an hour without meds in my system. My concern is just that narcotics are so frowned upon. People, in the past, have made me feel like an addict. They embarrassed me in the office, in front of other patients, and because they would only give me 30 at a time, I was always calling and asking for more. Due to that....I was "that girl" always wanting meds, and they treated me like I was abusing them.
I am hoping this isn't the case with a pain specialist. Can you give me any info on what to expect? You seem like you have been dealing with atypical pain longer than I have. I would appreciate any advice! either in a reply or a message.
Hope you are doing well and have had some pain free days this summer.
PS have you tried prednisone? my doctor told me about the side effects, and told me not to get used to it, but gave me a short dose for my vacation to mexico this summer, just so i could have some relief. WOW. i'm almost willing to take it consistently, knowing it is killing my organs, just to have a pain free life!
thanks so much
tammie
Dear Tammie,
I’m sure you’ve been to the Pain Clinic by the time I have read this. Since school started, with all of the obligations I had to my girls going back to school, etc., I have just now been able to get back to spending the time with the group that I used to. Now that I’m back, I see that I’ve missed a lot!
Yes, narcotics are frowned upon by naive people who believe that anyone who is dependent upon a substance to maintain any quality of life must be an addict. This goes back to there being a difference between addiction and dependency. Many people, unfortunately even a lot of physicians, just do not get it. The people whose pain responds to opiates, and nothing else, are who the drugs are manufactured for.
I have since read about your experience with Cleveland Clinic, and was sort of mortified. It is the most uninformed experience with physicians regarding facial pain that I have read about here, or elsewhere. Their concept that ATN is non-existant is something which alien to me.
So, I am wondering what DID happen at the pain clinic for you, though. I am sorry I was not there with any good advcie about Pain Clinics. I have a wonderful nurse practitioner who has helped me. Unfortunately, she just changed clnics. My best advice is if you find someone who understands ATN and is willing to prescribe what helps, hang on tooth and nail and follow them to a different clinic, even if they move. You will have developed a repoire with them, and they will understand your case history.
Pain Management doctors seem to prefer whenever a person is well-educated on their illness. I find that some are more willing to listen than others. Not all are created equat. I’ve found that out, for sure! I’ve seen so many now, one could not seem to make the distinction between Type I and Type II Trigeminal Neuralgia. I’ve had two very good Pain Management professionals. I find that the Nurse Practitioners, who are mostly women, and I hate to be predjudice, but it’s true, seem to have been more receptive to what I had to say, to actually learn from me, rather than preach at me, than the men I’ve seen. It’s sad, but it has been the truth for me, at least.
I do not like what Morphine is doing to my organs. Right now, I just don’t have a choice. I have to stick to what works, because my daughters are depending on me not to be side-lined, on the couch in terrible pain. I wish this disesase did not require such choices. I have often wondered if Methadone, or OxyContin would help any better.
Prednisone is not one I have ever tried, or have been prescribed. I hope your vacation went well, and that you enjoyed some pain free summer days.
I am having a lot of pain as I type this as my meds are wearing off. I suppose it’s time to try to sleep.
Blessed be,
Stef
misstammie said:
Hi Stef,
I wanted to let you know that I have tried all the "typical" drugs as well. They all had such extreme side effects I had to miss over two months of school. (I am an elementary school teacher.)
Recently, I agreed to have an MVD, and the pain came back almost immediately. Since then, it has even gotten worse. I have moved across the county, (home) and had the chance to see some great docs. Next week I am seeing a pain specialist. I wanted to ask your advice before I go... The ONLY thing that works for me are narcotics. I agree with you that I would rather be dependent on them that have a poor quality of life, especially because I am only 29. I teach 4th grade and can't even make it an hour without meds in my system. My concern is just that narcotics are so frowned upon. People, in the past, have made me feel like an addict. They embarrassed me in the office, in front of other patients, and because they would only give me 30 at a time, I was always calling and asking for more. Due to that....I was "that girl" always wanting meds, and they treated me like I was abusing them.
I am hoping this isn't the case with a pain specialist. Can you give me any info on what to expect? You seem like you have been dealing with atypical pain longer than I have. I would appreciate any advice! either in a reply or a message.
Hope you are doing well and have had some pain free days this summer.
PS have you tried prednisone? my doctor told me about the side effects, and told me not to get used to it, but gave me a short dose for my vacation to mexico this summer, just so i could have some relief. WOW. i'm almost willing to take it consistently, knowing it is killing my organs, just to have a pain free life!
thanks so much
tammie
Newly diagnosed here: I'm working my way up the dosage steps of gabepentin currently. So far it seems to take the edge off sometimes, but it's not really cutting it. It seems the biggest impact is in the form of side effects, like "it's-on-the-tip-of-my-tongue-itis" and "these stairs have suddenly become challenging."
Just today my doctor added a new medication(s), which I have never heard of in my Internet searches. It's basically a customized compound in a cream form. It was delivered to my home, prescribed by my doctor, but filled at a pharmacy in a different state. The combination of medications is ketamine/clonidine/imipramine/gabapentin/lidocaine (typing that directly from the paperwork). I guess I'm supposed to keep an impact journal and then all the dosages will be in a constant state of adjustment.
Does this sound familiar to anyone; anyone have any insights into it? When my doctor first approached me about it, it sounded like it was something she had recently been made aware of.
I'm as much afraid of side effects as I am of the pain; I can't not be able to bring my A game every day, but I can feel it slipping away. I've even considered "just dealing with it" with no meds at all but to be honest, just the last three days, even on my meds, have sapped my stamina in terms of my belief that I can "just deal with it" for any length of time.
Is there a brand name ?
First, I am so sorry you are on gabapentin. It was the worst medication I have ever taken, and for me, the side effects were too much. I quit after a month.
Second, my mother recently had a lung removed. She has extensive nerve damage around her core. She was prescribed a cream medication, that was compounded for her here in Indiana. I know it was hundreds of dollars, and not covered by her insurance, but she said it was totally worth it.
I have used it on my face twice, and both times it took my pain from a ten down to a three or 4, over an hour or so. I'll look up the ingredients when I am there next.
Is it working for you?
Tammie
wrigley said:
Newly diagnosed here: I'm working my way up the dosage steps of gabepentin currently. So far it seems to take the edge off sometimes, but it's not really cutting it. It seems the biggest impact is in the form of side effects, like "it's-on-the-tip-of-my-tongue-itis" and "these stairs have suddenly become challenging."
Just today my doctor added a new medication(s), which I have never heard of in my Internet searches. It's basically a customized compound in a cream form. It was delivered to my home, prescribed by my doctor, but filled at a pharmacy in a different state. The combination of medications is ketamine/clonidine/imipramine/gabapentin/lidocaine (typing that directly from the paperwork). I guess I'm supposed to keep an impact journal and then all the dosages will be in a constant state of adjustment.
Does this sound familiar to anyone; anyone have any insights into it? When my doctor first approached me about it, it sounded like it was something she had recently been made aware of.
I'm as much afraid of side effects as I am of the pain; I can't not be able to bring my A game every day, but I can feel it slipping away. I've even considered "just dealing with it" with no meds at all but to be honest, just the last three days, even on my meds, have sapped my stamina in terms of my belief that I can "just deal with it" for any length of time.
No, there is no brand name. It’s a bottle, similar to those cans of bug spray, except a cream comes out when you depress the top. There is a prescription label on it, plus all the warning labels, with one saying, “This item is specially compounded for you, call …” but then the rest is covered by another label." The ingredients, or medicines or whatever, are the ones I listed. The positive side is that my insurance did cover it, but I still owe $50 a pop apparently. I guess a small price to pay if it works.
SF Bill said:
Is there a brand name ?
I'm sorry to hear about your mother's health issues. I will pray for both you and her, once I get over my anger and resistance to doing any sort of prayer. In the meantime I'll shoot some positive vibes your way.
As far as the question about how it's working with me, I guess my best answer is it's too soon to tell? I received it yesterday evening, and hesitated taking it until last night fairly late. Maybe it was coincidence, or some weird placebo effect, but I felt much more "woozy" than normal last night. The pain was definitely still there, and the level of pain seems to ebb and flow so much that I have a hard time knowing what, if anything, is affecting it. So, unfortunately, I can't say for certain if it helped.
I'm supposed to use it 3 to 4 times a day, in addition to the gabepentin pills (oh, and I forgot I also have tramadol to take as needed; that has had no measurable effect at all, as far as I can tell). I'll keep people posted in terms of this cream's effectiveness. I'm assuming that using a compound cream for ATN is a relatively new thing, but again, for me, all of this is a new thing so take anything I say with about three or four grains of salt.
Time to struggle through another day, a 5 pm deadline looms.
misstammie said:
First, I am so sorry you are on gabapentin. It was the worst medication I have ever taken, and for me, the side effects were too much. I quit after a month.
Second, my mother recently had a lung removed. She has extensive nerve damage around her core. She was prescribed a cream medication, that was compounded for her here in Indiana. I know it was hundreds of dollars, and not covered by her insurance, but she said it was totally worth it.
I have used it on my face twice, and both times it took my pain from a ten down to a three or 4, over an hour or so. I'll look up the ingredients when I am there next.
Is it working for you?
Tammie
wrigley said:Newly diagnosed here: I'm working my way up the dosage steps of gabepentin currently. So far it seems to take the edge off sometimes, but it's not really cutting it. It seems the biggest impact is in the form of side effects, like "it's-on-the-tip-of-my-tongue-itis" and "these stairs have suddenly become challenging."
Just today my doctor added a new medication(s), which I have never heard of in my Internet searches. It's basically a customized compound in a cream form. It was delivered to my home, prescribed by my doctor, but filled at a pharmacy in a different state. The combination of medications is ketamine/clonidine/imipramine/gabapentin/lidocaine (typing that directly from the paperwork). I guess I'm supposed to keep an impact journal and then all the dosages will be in a constant state of adjustment.
Does this sound familiar to anyone; anyone have any insights into it? When my doctor first approached me about it, it sounded like it was something she had recently been made aware of.
I'm as much afraid of side effects as I am of the pain; I can't not be able to bring my A game every day, but I can feel it slipping away. I've even considered "just dealing with it" with no meds at all but to be honest, just the last three days, even on my meds, have sapped my stamina in terms of my belief that I can "just deal with it" for any length of time.
I’ve been taking 200 mg of Topamax daily with great success since January 2011. When I have a migraine pop up, usually once a month, I have minor symptoms appear but they only last a day or so and are very manageable. However, I also started taking Hydrocodone (generic Lortab) for my bulging disc issues in my lower back pain issues in July and since then when I’ve had a migraine I’ve not had any symptoms return. Unfortunately, this last week I ran out of the Hydrocodone and it required doctor authorization for refill and my doc was on vacation. I’ve had a full blown flare up almost to the point to pre-Topamax days. I guess the Hydrocodone was assisting more than just my back. And all this time my pain management doctor for my back was asking why the Topomax wasn’t alone helping my back pain??? hmpph! I clearly need them both for both issues.
So far having some success with Carbamazepine, a lot less side effects for me that Gabapentin. I’m a lot more lucid and can have a normalish day, which is great. Down side is interference with my contraceptive pill. I’m also taking amitriptyline at night and the combination seems to be working for me!
have. you started the patch yet.
Ny was a disaster.
i dont know how to accept this as reality/
hugs!
feeling better.
hot pepper cream. dr christophers! also their muscle spray. burns the nerves and shuts them up.
Has anyone else had success with Prednisone?
Before my diagnosis I went to the Emergency Room (for the umpteenth time) and was given Prednisone in addition to all of the other "headache" drugs that are typically administered (migraine drugs, Oxycodone, etc). That was the only thing that was different from every other ER visit and it worked. I was almost pain free a few hours after the injection and totally pain free a day later with continued oral Prednisone. I couldn't believe it.
I followed up with a Neurologist after that ER visit and finally got the diagnosis of ATN. He treated me with all of the other more typical TN drugs of the time (Neuronitn, Tegretol, etc) but the Prednisone is the one thing I can count on working every time, completely, and without fail (so far, at least). That was about 5 years ago.
I have ATN episodes that last about a month or two, usually a couple of times a year (although I recently went almost 2 years between episodes). The episodes are lasting longer and longer as time goes on. I've had ATN for 19 years. When they started they only lasted a couple of hours and went away with a nap. Now, I use high doses of Prednisone - 60mg a day for about a week, then 50mg for a week, etc. I taper off as I'm able.
Hope this helps someone. I'm curious to know if Prednisone works for anyone else??