maybe we should start a nurses group & figure out how to educate the medical community!!! as a nurse, I'm continually trying to second-guess everything. makes me crazy but feel i have to. I don't have kids at home anymore, but working is a HUGE issue. the med s/e are better than intolerable pain, but so frustrating. and pain is never far away. maybe we do a collage of everyone's faces & label it "the faces of pain: the worst pain known to medical science:the suicide disease.". Red, let's do a PSA! and not one that shows at midnight on some obscure cable channel.
I'm glad your work will work with you..mine has an extremely strict attendance policy. If I call in twice in two months they take disciplinary action. from verbal warning...then written, then three day suspension to possible dismissal. no exceptions. That's why I had to take a short term medical leave to adjust to meds!!!! They are so "Policy" consumed the forget we're actual people!!! Hope you're able to drop your shift:) I'm very glad that you have a supportive environment at work... best to you Porcelina said:
My boss is on holiday at the moment but I am going to have a meeting with her to see about dropping some hours (I work 1x 12hr shift one week and 2 the next, would rather it be one shift a week). She has been fantastic through when I was in hospital with those side effects and my sick leave while meds were coming right. It's a good thing I have over a months worth of annual leave saved up in case I need it. When I needed to call a hospital duty manager to take a sick day every single one of them didn't question when I said I had TN. One of them even had TN for a while (I assume from an injury, he has come right) so he was very sympathetic.
I think a nurses group would be awesome!
Laurieanne said:
Thanks for sharing- what a nightmare in the ER you had!!! Hope you're able to get a new Doctor instead of the idiot:-) I hope you tell him where it's at!
How does your work/work schedule react to your needs when you have to change meds and need some time to adjust and see how they are going to effect you?
Porcelina said:
I fit the bill - a mother and a nurse! You sound just like me when I was on tegretol (am now on gabapentin and don't get the brain fog with it but I know how it feels!). I think it's worse being a nurse too (I'm a pediatric nurse) because we always know the worst things that can happen as well as expectations can be higher I guess. I have preschoolers and have to run into my bedroom in a bad attack so they don't see me in pain. I also get pretty grumpy when sore :( Tegretol put me in hospital, I had a pathetic encounter with a neurologist as an inpatient who argued it wasn't the tegretol causing my neuralgia in my arms (so bad I had to sit in the ER with my arms in the air, putting them down on anything was like razors cutting me), the medical consultant changed my meds and it relieved it so the neuro was so wrong (he also said that it's not TN due to pain lasting more than few seconds - wtf?!). I am seeing that idiot again next week - not sure he realised I was a nurse so look out! ... we do kind of hold the power there - nurses armed with info and we have the guts to fight for our rights as patients. So you can take heart in that fact, imagine a patient in pain that feels that they can't question a doctor's judgement/orders and yet we can! I hope your meds get sorted, I hope you get to have an MRI (I had a "normal" one without contrast which I will be jumping up and down about, I want to know if this is a blood vessel which may warrant an MVD or whether this is the nerves themselves) and I hope that your family understand.
Hi Laurieanne, I'm so sorry your having so much pain! I am a nurse also, and am still working. (I didn't realize that we had so many nurses here). I also take Neurontin (100mg TID), at night I take 0.5 mg of Klonopin, and 5 mg Flexeril (I have TMJ and the clenching at night aggrivates my TN). This combination seems to work well for me and minimizes what I take during the day. If the Nuerontin isn't working, maybe talk to your MD about adding other meds at lower doses instead of just upping your dose. The Neurontin did leave me a little groggy at first, but I adjusted to it, and it barely affects me anymore. I know I am on a lower dose that most, and it didn't work right away, it took some time to build up in my system. Maybe you could take higer doses at night, and minimal during the day. I don't claim to be pain free, but I am at a tolerable level.
As a nurse you have probably researched every med and treatment as have I. Unfortunately many MD's don't have a lot of knowlege about TN. I am fortunate to have an MD that allows me to dictate my care, and is receptive to suggestions. We have tried several drug combo's until we found one that has worked. We as patient's have to be a little pushy, and not just accept what they are offering. I hope you find the right recipe for your pain and have pain free days in your future!
I just want you to know you and your family are in my prayers. I feel the same because I travel a lot …long trips, but I’ve learned to manage it with this topical compound. The rx has to be compounded so you take it to a special pharmacist. It has ketamine, gabapentin, bubifocaine, and soma. Almost immediate relief. I feel like a shut-in sometimes. Grocery stores trigger because they are so cold. I can’t imagine how difficult it is for you because I have no children. In my prayers, Julz
Catherine, did I read that correctly you’re only taking 100mg TID not 1000mg TID? and the pain is controlled with only that & the klonopin? (not counting the flexeril for tmj). if so, I’m amazed… and very happy for you!
Catherine said:
Hi Laurieanne, I’m so sorry your having so much pain! I am a nurse also, and am still working. (I didn’t realize that we had so many nurses here). I also take Neurontin (100mg TID), at night I take 0.5 mg of Klonopin, and 5 mg Flexeril (I have TMJ and the clenching at night aggrivates my TN). This combination seems to work well for me and minimizes what I take during the day. If the Nuerontin isn’t working, maybe talk to your MD about adding other meds at lower doses instead of just upping your dose. The Neurontin did leave me a little groggy at first, but I adjusted to it, and it barely affects me anymore. I know I am on a lower dose that most, and it didn’t work right away, it took some time to build up in my system. Maybe you could take higer doses at night, and minimal during the day. I don’t claim to be pain free, but I am at a tolerable level.
As a nurse you have probably researched every med and treatment as have I. Unfortunately many MD’s don’t have a lot of knowlege about TN. I am fortunate to have an MD that allows me to dictate my care, and is receptive to suggestions. We have tried several drug combo’s until we found one that has worked. We as patient’s have to be a little pushy, and not just accept what they are offering. I hope you find the right recipe for your pain and have pain free days in your future!
Hi I am also a mum nurse and midwife . I have found this has affected my practice . I work fairly autonomously in the community . A large part of my job is parenting and health student education and the Gabapantin 300 mg tds and nortryptoline 10mg nocte affects my word retrieval so I do find myself dumbing down my conversation so I can find a word that fits . Otherwise Im not really having side effects apart from being less energetic. I don’t volunteer for any extra responsibilities and I’m conscious of not picking up or carrying babies . I work part time and I know if I needed to my boss would be very accomodating. So far Ive just said I have chronic migraines. I think in some workplaces nurses are the worst at looking after each other . Luckily my children are getting to an age where they are more independent , I don’t know how I would cope if they were pre schoolers. I’m hoping for some respite from the pain for all of you.
Hi I am wondering what you think of this cream. Everyone that I've mentioned it to and that has gotten it is so grateful. Please, I hope that some of you will give it a try. I was especially touched by Megan, I think who said she was crying. Plesae try this cream!!! It is a life saver, not a cure, but certainly numbs that part of the face. I am not a nurse but my mom was. I also have several cousins who are RN's. One of which teaches at a Nursing School and works at a hospital. They are both very loving and kind, like I find most nurses are.
I think it must be hard when you are helping a patient who may be ungrateful or mean and who has no idea that nurses have their own issues and you never know what others might be going through.
Let me know and I will get the RX out and let you know what the percentages of each ingredient are.
Laurieanne, I will be thinking of you and all of the nurses here. I am amazed at the sheer number of people who have this disease. I just met a man who had Gamma and who works for the magazine my husband's company publishes. That was only 3 days ago and he's doing quite well. I hope I mentioned that this is year 12 for me. I am learning through reading others comments that some people have it worse than me. I have pain in the mandibular and the ocipital area. Sometimes the pain is inside my mouth where the gum gets red and burns. I guess I should try some tooth numbing stuff for that. Right now, my meds seen to have my pain under control and as long as I am not talking I do a lot better. I love to talk, but not so much anymore.
I still feel alone. Don't have many friends in my new state. I guess it just takes some time, but when I was in TX most of my friends stopped coming around. Anyone else have that happen? I think they got tired of hearing about it. I have to learn to answer the questions, "how are you doing" with a "just fine, thank you" instead of telling them I'm still suffering. Any advice is welcome.
Thank you all for sharing your stories. Has anyone tried this compound before?
I do only take 100mg three times daily, and actually just dropped to 200mg daily this week, and tonight is my first night w/o the Klonopin, I have been weaning from that. I also take 600mg/day Magnesium, and 4,000IU/day of vitamin D (I have been low). I am praying that I might be going into remission, we'll see as I continue trying to wean off the meds. I did recently start taking a prenatal vitamin, and cut out all B12 as it was very high. I don't know if the vitamins are helping, it's spontanious remission, or 200mg/day of Neurontin is all I need, but am grateful that my pain is finally in control.
I know that this is where I'm at today and tomorrow my pain could go back to a 10, an part of me is afraid to wean of the meds and find myself at square one. But for now I'm hopeful, and hope that this provides others with hope because I've been there...wondering if you'll ever get any releif. I hope you and everyone hear gets some!
mrl said:
Catherine, did I read that correctly you're only taking 100mg TID not 1000mg TID? and the pain is controlled with only that & the klonopin? (not counting the flexeril for tmj). if so, I'm amazed... and very happy for you!
Catherine said:
Hi Laurieanne, I'm so sorry your having so much pain! I am a nurse also, and am still working. (I didn't realize that we had so many nurses here). I also take Neurontin (100mg TID), at night I take 0.5 mg of Klonopin, and 5 mg Flexeril (I have TMJ and the clenching at night aggrivates my TN). This combination seems to work well for me and minimizes what I take during the day. If the Nuerontin isn't working, maybe talk to your MD about adding other meds at lower doses instead of just upping your dose. The Neurontin did leave me a little groggy at first, but I adjusted to it, and it barely affects me anymore. I know I am on a lower dose that most, and it didn't work right away, it took some time to build up in my system. Maybe you could take higer doses at night, and minimal during the day. I don't claim to be pain free, but I am at a tolerable level.
As a nurse you have probably researched every med and treatment as have I. Unfortunately many MD's don't have a lot of knowlege about TN. I am fortunate to have an MD that allows me to dictate my care, and is receptive to suggestions. We have tried several drug combo's until we found one that has worked. We as patient's have to be a little pushy, and not just accept what they are offering. I hope you find the right recipe for your pain and have pain free days in your future!
At this point I am willing to try anything!! I just had my mri done last week and am still waiting to hear about the results. If you could give me a little more info about the cream, I would greatly appreciate it! I have not slept for more than an hour at a time in the past few weeks because the pain is getting worse for me...the MD only has me on Trileptal since I'm newly diagnosed, but this whole not sleeping is beginning to really catch up with me, especially at work. We've tried valium to try to relax me, and dilaudid for extreme pain, but neither is doing anything but making me a little dizzy when I walk around. Thank you in advance!!
uwfotogal said:
Hi I am wondering what you think of this cream. Everyone that I've mentioned it to and that has gotten it is so grateful. Please, I hope that some of you will give it a try. I was especially touched by Megan, I think who said she was crying. Plesae try this cream!!! It is a life saver, not a cure, but certainly numbs that part of the face. I am not a nurse but my mom was. I also have several cousins who are RN's. One of which teaches at a Nursing School and works at a hospital. They are both very loving and kind, like I find most nurses are.
I think it must be hard when you are helping a patient who may be ungrateful or mean and who has no idea that nurses have their own issues and you never know what others might be going through.
Let me know and I will get the RX out and let you know what the percentages of each ingredient are.
Laurieanne, I will be thinking of you and all of the nurses here. I am amazed at the sheer number of people who have this disease. I just met a man who had Gamma and who works for the magazine my husband's company publishes. That was only 3 days ago and he's doing quite well. I hope I mentioned that this is year 12 for me. I am learning through reading others comments that some people have it worse than me. I have pain in the mandibular and the ocipital area. Sometimes the pain is inside my mouth where the gum gets red and burns. I guess I should try some tooth numbing stuff for that. Right now, my meds seen to have my pain under control and as long as I am not talking I do a lot better. I love to talk, but not so much anymore.
I still feel alone. Don't have many friends in my new state. I guess it just takes some time, but when I was in TX most of my friends stopped coming around. Anyone else have that happen? I think they got tired of hearing about it. I have to learn to answer the questions, "how are you doing" with a "just fine, thank you" instead of telling them I'm still suffering. Any advice is welcome.
Thank you all for sharing your stories. Has anyone tried this compound before?
When I was a nursing educator (I taught on a Bachelor of Nursing degree) we did a session with students about nurses as wounded healers ... that quite often we have endured something that has inspired us to help others but sometimes we haven't dealt with it (so we can have transference onto patients) or that we have so much to deal with that we can't effectively care for someone else. I tell you what, all this certainly now puts all of that into perspective! As a patient it's hard to remember that nurses are human and that we do go through our own troubles and as a nurse sometimes it's hard to put on our "nurses hat" at the start of the shift or take off our nurses hat at the end (here we need to trust in our colleagues to continue good care for our patients). The big question is how can/should we care for our patients without any regard for what is going on for us personally, should our patients expect us to push everything to the back of our minds ... is part of a professional relationship with a patient sharing parts of ourselves too (and how much of ourselves) ... is mentioning we too have health issues burdening our patients or is it sharing within that relationship ... is it an excuse to justify (maybe to ourselves if we think we haven't done a good enough job) care that could have been better?
(you can tell I have a grad diploma in professional ethics and I used to teach the ethics paper!) :D I was going to do my masters thesis on the ethics of friendships with patients when I get time!
I've made a group called Health Professionals with TN for all of us, it's just awaiting approval :)Nurses, doctors, physios, healthcare assistants, all health professionals welcome!
I had to give you an update. I dropped my Neurontin to 200 mg/day about 5 days ago, and stopped my Klonopin all together about 3 days ago, and guess what...the pain is coming back. I was fine when I dropped the other dose of Neurontin, and I didn't really think the Klonopin was doing all that much, but I guess it was. The only reason I mention this is because I really think it's the combo of the meds that helped me (not just one). I re-upped to 300mg/day Neurontin and will try this for a week or two before I try to re-introduce the Klonopin.
Catherine
Catherine said:
Hi Mrl,
I do only take 100mg three times daily, and actually just dropped to 200mg daily this week, and tonight is my first night w/o the Klonopin, I have been weaning from that. I also take 600mg/day Magnesium, and 4,000IU/day of vitamin D (I have been low). I am praying that I might be going into remission, we'll see as I continue trying to wean off the meds. I did recently start taking a prenatal vitamin, and cut out all B12 as it was very high. I don't know if the vitamins are helping, it's spontanious remission, or 200mg/day of Neurontin is all I need, but am grateful that my pain is finally in control.
I know that this is where I'm at today and tomorrow my pain could go back to a 10, an part of me is afraid to wean of the meds and find myself at square one. But for now I'm hopeful, and hope that this provides others with hope because I've been there...wondering if you'll ever get any releif. I hope you and everyone hear gets some!
mrl said:
Catherine, did I read that correctly you're only taking 100mg TID not 1000mg TID? and the pain is controlled with only that & the klonopin? (not counting the flexeril for tmj). if so, I'm amazed... and very happy for you!
Catherine said:
Hi Laurieanne, I'm so sorry your having so much pain! I am a nurse also, and am still working. (I didn't realize that we had so many nurses here). I also take Neurontin (100mg TID), at night I take 0.5 mg of Klonopin, and 5 mg Flexeril (I have TMJ and the clenching at night aggrivates my TN). This combination seems to work well for me and minimizes what I take during the day. If the Nuerontin isn't working, maybe talk to your MD about adding other meds at lower doses instead of just upping your dose. The Neurontin did leave me a little groggy at first, but I adjusted to it, and it barely affects me anymore. I know I am on a lower dose that most, and it didn't work right away, it took some time to build up in my system. Maybe you could take higer doses at night, and minimal during the day. I don't claim to be pain free, but I am at a tolerable level.
As a nurse you have probably researched every med and treatment as have I. Unfortunately many MD's don't have a lot of knowlege about TN. I am fortunate to have an MD that allows me to dictate my care, and is receptive to suggestions. We have tried several drug combo's until we found one that has worked. We as patient's have to be a little pushy, and not just accept what they are offering. I hope you find the right recipe for your pain and have pain free days in your future!
I had to give you an update. I dropped my Neurontin to 200 mg/day about 5 days ago, and stopped my Klonopin all together about 3 days ago, and guess what...the pain is coming back. I was fine when I dropped the other dose of Neurontin, and I didn't really think the Klonopin was doing all that much, but I guess it was. The only reason I mention this is because I really think it's the combo of the meds that helped me (not just one). I re-upped to 300mg/day Neurontin and will try this for a week or two before I try to re-introduce the Klonopin.
It is very important that you take Neurontin. I notice when I don't take it my pain is worse. Also I take xanax to keep me relaxed and I know that works. I've been taking 6mg. of xanax for a very very long time. I take 1800 mg. of Neurontin. 600mg. 4x/day.
More about the cream. Here is the RX:
Bupivocaine 1%; Gabapentin 6%; Ketamine 10% and Ketprofen 10%. Just rub a little where it hurts, often I go ahead and put it all over. For just about 5 seconds. Wear gloves or wash your hands really good after you use it. Try not to get it in your eyes. This is a miracle drug because it makes the area numb for awhile. Please keep me informed. Let's try to get the word to other TN patient about how this works. Have faith, go ahead and use it when you don't have pain, like that's happening!
Catherine
Catherine said:
Hi Mrl,
I do only take 100mg three times daily, and actually just dropped to 200mg daily this week, and tonight is my first night w/o the Klonopin, I have been weaning from that. I also take 600mg/day Magnesium, and 4,000IU/day of vitamin D (I have been low). I am praying that I might be going into remission, we'll see as I continue trying to wean off the meds. I did recently start taking a prenatal vitamin, and cut out all B12 as it was very high. I don't know if the vitamins are helping, it's spontanious remission, or 200mg/day of Neurontin is all I need, but am grateful that my pain is finally in control.
I know that this is where I'm at today and tomorrow my pain could go back to a 10, an part of me is afraid to wean of the meds and find myself at square one. But for now I'm hopeful, and hope that this provides others with hope because I've been there...wondering if you'll ever get any releif. I hope you and everyone hear gets some!
mrl said:
Catherine, did I read that correctly you're only taking 100mg TID not 1000mg TID? and the pain is controlled with only that & the klonopin? (not counting the flexeril for tmj). if so, I'm amazed... and very happy for you!
Catherine said:
Hi Laurieanne, I'm so sorry your having so much pain! I am a nurse also, and am still working. (I didn't realize that we had so many nurses here). I also take Neurontin (100mg TID), at night I take 0.5 mg of Klonopin, and 5 mg Flexeril (I have TMJ and the clenching at night aggrivates my TN). This combination seems to work well for me and minimizes what I take during the day. If the Nuerontin isn't working, maybe talk to your MD about adding other meds at lower doses instead of just upping your dose. The Neurontin did leave me a little groggy at first, but I adjusted to it, and it barely affects me anymore. I know I am on a lower dose that most, and it didn't work right away, it took some time to build up in my system. Maybe you could take higer doses at night, and minimal during the day. I don't claim to be pain free, but I am at a tolerable level.
As a nurse you have probably researched every med and treatment as have I. Unfortunately many MD's don't have a lot of knowlege about TN. I am fortunate to have an MD that allows me to dictate my care, and is receptive to suggestions. We have tried several drug combo's until we found one that has worked. We as patient's have to be a little pushy, and not just accept what they are offering. I hope you find the right recipe for your pain and have pain free days in your future!
Just put a dime size or less on your finger and rub in for 5-15 sec. Then allow time for it to work. It may not take away all of your pain, but it will decrease it.
mrl said:
for those who use the cream 1. where do you put it on your face? all over or specific spots? 2. what size 'glob' do you use on each place? 3. how do you rub it in for two minutes when it hurts to even touch your face?
Bupivocaine 1%; Gabapentin 6%; Ketamine 10% and Ketprofen 10%. Just rub a little where it hurts, often I go ahead and put it all over. For just about 5 seconds. Wear gloves or wash your hands really good after you use it. Try not to get it in your eyes. This is a miracle drug because it makes the area numb for awhile. Please keep me informed. Let's try to get the word to other TN patient about how this works. Have faith, go ahead and use it when you don't have pain, like that's happening!
I just got cream & would appreciate any input from the group.
I agree. Same here, tho I did need to get away from the narcotics for a while so that I could take a lower dose. I was taking 8mg dilaudad 8 times per day and I had a pain pump that was up to it's max and at one point before my mvd I was on 240mg. oxycontin per day. Wonder I am still alive. I gained 60 lbs. Once I got off in 2010, the weight melted away and I am at 139 right now. I have always been called skinny until I got this disease.
Patty said:
I am so sorry you have to travel this path. I was just diagnosed this past spring with TN and share your frustrations. I hate being the object of pitiful glances and smiles. I may be medicated but am not stupid. I am aware when I can't find the right words or walk into a chair. I am so thankful for a supportive husband. He is the best " nurse " ever. I pray you will be enfolded by a group of wonderful people. TN will not define us!
a compound requires a doctor's RX. I've never heard of anyone being turned away. It is 10% Ketamine; 6% Gabapentin; 10% Ketamine and 10% Ketoprofen. Just run it in where it hurts and the pain will slowed ease up. There is some kind of numbing substance in it.
I've been using it for years. Let me know if and how it works for you. I started a new group for people interested in this cream.
It has helped me tremendously when I remember to use it. Take care , Stay Calm and Carry On the best you can. Try to stay away from your triggers. Cold? move South or in my case hibernate. Talking, well, I love to talk so I do as much as I can, but then I have to go ly down.
Hope you all enjoy the relief this medication gives you. It is not covered by my insurance so I pay just over $100 every 3 months or so, but I don't use it 4 times per day as suggested. Think I will start doing that now.
I wouldn't give this guy the time of day! What a f-up. I've never heard of this before, but I believe you. Not many people can hold their arms up over their head for very long. It is an upper body workout when you need to stay calm.
Yours truly, Julz
Porcelina said:
I fit the bill - a mother and a nurse! You sound just like me when I was on tegretol (am now on gabapentin and don't get the brain fog with it but I know how it feels!). I think it's worse being a nurse too (I'm a pediatric nurse) because we always know the worst things that can happen as well as expectations can be higher I guess. I have preschoolers and have to run into my bedroom in a bad attack so they don't see me in pain. I also get pretty grumpy when sore :( Tegretol put me in hospital, I had a pathetic encounter with a neurologist as an inpatient who argued it wasn't the tegretol causing my neuralgia in my arms (so bad I had to sit in the ER with my arms in the air, putting them down on anything was like razors cutting me), the medical consultant changed my meds and it relieved it so the neuro was so wrong (he also said that it's not TN due to pain lasting more than few seconds - wtf?!). I am seeing that idiot again next week - not sure he realised I was a nurse so look out! ... we do kind of hold the power there - nurses armed with info and we have the guts to fight for our rights as patients. So you can take heart in that fact, imagine a patient in pain that feels that they can't question a doctor's judgement/orders and yet we can! I hope your meds get sorted, I hope you get to have an MRI (I had a "normal" one without contrast which I will be jumping up and down about, I want to know if this is a blood vessel which may warrant an MVD or whether this is the nerves themselves) and I hope that your family understand.
I've made a group called Health Professionals with TN for all of us, it's just awaiting approval :)Nurses, doctors, physios, healthcare assistants, all health professionals welcome!
Hi Laurieanne: While I am not a health professional, my mom is a retired nurse. Would I still be allowed to follow your new group? I find that nurses have great information and I think I have something to contribute. Let me know and with my arms wrapped around you, I am very truly yours, Julz aka uwfotogal!
Laurieanne said:
very cool...
Porcelina said:
I've made a group called Health Professionals with TN for all of us, it's just awaiting approval :)Nurses, doctors, physios, healthcare assistants, all health professionals welcome!