I am having problems with Breakthrough pain. I am ATN with Type I breakthrough. With winter coming, the breakthrough pain is going to be intolerable. My local ER doesn't really know what to do with me.
I will be seeing my Neuro next week and asking him for an ER plan for breakthrough pain (or something he can prescribe). What is everyone else using?
Please indicate your breakthrough med. I was reading the transcript from the ATN discussion and it began to get very confusion what was a dialy med and what was a breakthrough med.
I only had my first attack about 2 months ago. I was on Neurontin, but it only helped for a week. Now I am on Lyrica with Cymbalta as an antidepressant. I know I am not really i under control yet, but when the pain gets bad I take Xanax and it helps a bit.
Does the Xanax help you cope and deal with the pain or does it actually relieve the pain? I am asking because I just looked it up and the site I found lists it as an anxiety type med. Interesting
Sorry it took me so long to get back to you. My ENT said the Xanax helps because it somehow does something to the nerves. It also helps me to relax which also helps. Not great for really bad pain, but right now it is all I have. Going to ask the neuro next week.
Percocet Asprine, warm rice bags, When it gets that I can not stand it any longer, a trip to the ER. Do not know what they give me (dont think I want to know) but they can knock it back in a hurry. Luckly have only had to use them twice since the first major last November. They seem to have my chart on stand by and I get a call from my PC the next day asking how I am doing and wanting to see me either that day or the next. (I guess they call him as soon as they take me in).
I’m just curious - what did the ER do for the break through pain? I had a severe pain attack today during which the entire left side of my face felt like explosions were happening and it lasted nearly 3 minutes. Usually my pain is bursts of pain of varying degrees. Given today’s pain episode, I feel as though I need an emergency plan in case the pain doesn’t go away on its own. I’m already taking 2 anti seizure medicines which usually keeps the pain at a manageable level although it’s still quite painful. Thanks!
I was curious too Jerry. If you don't mind, try to find out what they give you next time because it sounds effective.
They gave me Torodol, but I don't think its meant for this. It seems to turn the sharpness of the pain into a bit of a numbness, but it certainly doesn't take it away. They have no clue what to do otherwise.
Say my neurologist finally and his "ER Plan" was a joke. He looked at me like I was crazy for asking for such a thing and told me just to take a 200mg tegretol if it acts up!! I quit taking tegretol 3 mos ago (replaced with Nortrip) and at that time I was on 1000mg daily!! I didn't think tegretol was a fast acting type of pill so I don't see the wisdom in this recommendation.
On the good side he will do another MRI - my last one was 8 years ago. I aslo asked to see Dr K in Winnipeg and he wasn't very receptive. I didn't back down so he said he would send me once the MRI results were done because DR K will want those anyway. What a rant!!
I can’t imagine how I’d even communicate with the ER if an episode like today’s severe pain happens. Sounds like they were not too receptive to the communication via writing based on Jackie’s experience. I wish that medical folks were better educated on this condition. This is serious pain to the point where people can be incapacitated - unable to eat, move, talk etc.
If I can remember, I will try to find out. I have ATN, and ER trips are TN attacks. They start slow maybe a bolt every hour or so lasting 3-5 seconds. By the time I am ready for the ER, they are every 30 - 45 seconds apart. By that time I have tried everything to bring it under control and nothing works. When I go in, my wife does the talking, and like I said they know me so not much talking is needed.
Hi Elaine, when I’ve had real bad days with TN. Trips to the ER aren’t completely helpful. They usually give me an IV of morphine and Ativan. My regular medicine is trileptal. At times I can go without taking it at times I need 4 a day. As far as what I do for breakthrough pain. I had gamma knife about 3 years ago and my pain has changed. I now hurt most of the time, ( anesteshia delorosa ?) I seem to get warning of a TN attack which I never used to. So i only sleep about 4 hours a night at the most. I ran into problems with breakthrough meds ( I pray that you don’t or anybody else goes through what I went through with breakthrough meds. I started off taking 5 mg per overs and .5mg Ativan every 4 hours as needed. I ran into a problem after a couple of months after taking 4 percocets a day oh the ativans were every 12 hours. Then they wer’nt working as well. I needed 1 1/2-2 percocets and 1mg Ativan. Then I was moved up to 10mg oxycodone ( same as two 5 mg percocets with less Tylenol added). They wouldn’t prescribe more then that. 2mg ativans were eventually prescribed. .5 mg ativans made me loopy and now I can take the largest dose allowed in pill form ( 2 mg) and drive around without it affecting me. I started ( I never thought it would be me) taking 2-3 10/325 Oxycodone pills every four hours. Then I’d run out early and live in horrible pain and withdrawals. I would just get so desperate and the smaller doses of breakthrough pain didn’t help anymore. Now I stay away from Oxycodone and take 10/325 Norco pills every 4 hours as needed. It doesn’t work near as well but the oxycodone worked so well at times I would cry. Getting a break from the pain was such a blessing I would forget about the consequences of taking to much med and running out early. I think I have written to much, I can’t tell I’m on my phone and my message is just showing up as a long single sentence which I can’t even backspace to see what I’ve written. Please be careful with breakthrough meds. A lot of people develop a tolerance to pain meds. Requiring higher dosages until the med. Is no longer effective and the dr. Won’t prescribe anymore pills. Be blessed. Brian
When I. Have went to the er they usually give me dalad (oxymorphone) but it takes a couple of shots to even knock it down enough to even talk. The rest of the time they haven’t helped at all. The last time I went in with an attack I sat in the waiting room for over an hour in aganizing pain untill it stopped and I just left. They do not seem to have much understanding about this at all.
What are you using to treat your break through pain? As far as if you have to go to the ER? There are a variety of choices that are much better than opiods. If you look at everything chemically, neurologically; opiods do not work on the same pain receptors that we feel our neurological pain.
I have had TN for nine years, atypical, bilateral and all parts of my face. For ER treatments: IV cerebrex works wonders for me!
Let me know what you have tried and then I will see what else I think of.
Hi Elaine, when I've had real bad days with TN. Trips to the ER aren't completely helpful. They usually give me an IV of morphine and Ativan. My regular medicine is trileptal. At times I can go without taking it at times I need 4 a day. As far as what I do for breakthrough pain. I had gamma knife about 3 years ago and my pain has changed. I now hurt most of the time, ( anesteshia delorosa ?) I seem to get warning of a TN attack which I never used to. So i only sleep about 4 hours a night at the most. I ran into problems with breakthrough meds ( I pray that you don't or anybody else goes through what I went through with breakthrough meds. I started off taking 5 mg per overs and .5mg Ativan every 4 hours as needed. I ran into a problem after a couple of months after taking 4 percocets a day oh the ativans were every 12 hours. Then they wer'nt working as well. I needed 1 1/2-2 percocets and 1mg Ativan. Then I was moved up to 10mg oxycodone ( same as two 5 mg percocets with less Tylenol added). They wouldn't prescribe more then that. 2mg ativans were eventually prescribed. .5 mg ativans made me loopy and now I can take the largest dose allowed in pill form ( 2 mg) and drive around without it affecting me. I started ( I never thought it would be me) taking 2-3 10/325 Oxycodone pills every four hours. Then I'd run out early and live in horrible pain and withdrawals. I would just get so desperate and the smaller doses of breakthrough pain didn't help anymore. Now I stay away from Oxycodone and take 10/325 Norco pills every 4 hours as needed. It doesn't work near as well but the oxycodone worked so well at times I would cry. Getting a break from the pain was such a blessing I would forget about the consequences of taking to much med and running out early. I think I have written to much, I can't tell I'm on my phone and my message is just showing up as a long single sentence which I can't even backspace to see what I've written. Please be careful with breakthrough meds. A lot of people develop a tolerance to pain meds. Requiring higher dosages until the med. Is no longer effective and the dr. Won't prescribe anymore pills. Be blessed. Brian
Haven't been on here in a while....I have been given Torodol. It is supposed to be an anti-inflamatory so I don't know how that treats neuropathic pain. For me, it does turn the sharp pain into more of a dull annoyance but it doesn't really provide a very good solution. Recently I saw my Neurologist and asked for an ER plan. He just told me to take a 200mg tegretol tablet. Not sure how that's supposed to work because tegretol (as far as I know) is not really fast acting. Good to hear what others have tried-thanks.
I am have an episode of breakthrough pain right now. When I get my pain, it is intense and lasts for months sometimes. I have had this since I turned 40 and I'm 57 now. Pain meds never help and I seem to just have to let it run it's course. I get to a point I can't stand it. I take tegretol 600mg every day,and still end up with pain. It always seems to b related to something going on in my life. I just had a hip replacement in January and now I have this. If I increase my Tegretol I don't think I will be able to stay awake. I wish someone would have the cure without it being any more medication and not aving to have surgery.