If so, any side effect or withdrawal effects? Please be sure to mention if you were changing any other medications at the same time. I'm considering getting a prescription filled for it. Thanks for any comments would be much appreciated.
only saw your post - sorry for the late reply. I've been on Butrans for 5 months. I've been a chronic daily migraine sufferer for 10 years and a lifelong sufferer for 35 years. The first two days after I put the patch on, I didn't have a headache, but it returned on the third day. I also had some initial nausea but I take nausea suppositories for my migraines and that helped ( I would seriously recommend asking for that when going on Butrans just in case this may be a problem for you - you don't want to discard something that may work just because of a day or so of nausea that may be helped with meds). Being a chronic sufferer, my first problem was detoxing off my daily abortive meds. I never was able to do that before without Butrans because my headache would get so bad that I would have to go to the ER if I wouldn't treat it with abortive meds. The Butrans took the edge off enough that I was able to get through a week without migraine meds. (NOTE: Please follow what your dr. says about tapering off your Percoset if you're on it while starting your first dose of Butrans- I went pretty much cold turkey because I was feeling good and started having withdrawal). My first good week turned into 2 and then 3 and 4 without a migraine. Since then, since I am a fibro sufferer also, I have settled in to a period of about every 5 days or so I'm getting a mild migraine that I'm able to handle pretty quickly with my meds. I really don't have any unmanageable side affects - the ones I have had are hot flash like sweating (which has decreased recently) and insomnia (which could be fibro). Sorry to be so blunt but those of us on pain meds know the horror of the bathroom routine...mine seems to have gotten better being on the patch versus the pill. Yeah for a good side effect! I also was able to get off my depression meds, reduced my preventitive meds, and for awhile stopped my muscle relaxants, but went back on them at night because they help me sleep. My Percoset, which can be used as intermittent for breakthrough pain, I haven't used for almost 3 weeks. And, of course, my abortive headache meds have been greatly reduced. Just the reduction in meds is making me feel better! For me, this patch has taken me out of bed every day and given me back my life! I'm still limited in what I can do but I am now in the land of the living.
Glad that you are so pleased with it. I'm wondering what dose is your Butrans patch, because it sounds like you got a bigger hit with it than I have. Mine is 5 mcg.
But I must say that the patch has tempered my severe migraines considerably--far less of them. In the almost 4 months that I have worn it, it has kept me out of the ER (except for once when they were induced by an abrupt change in my estrogen level.) I used to have to go to the ER at least once a month. I'm definately very pleased with it.
I still take my herbal Petadolex as a daily preventative which I have absolutely no side effects from. And I take Prisiq which I need for depression, but also works as a pain killer. I also get nerve block injections and Botox injections. Then I use a skin gel which takes away most of my headaches which I get every day. I use a nasal lidocaine for severe migraines which also doesn't get into my blood stream to cause any rebounds. When the severe ones come on and it's not convenient to use the nasal lidocaine, I use either acetomenophin, Lorcet or Esgic, but that's only about once a week now. Plus I do physical therapy on my shoulder and head areas almost every day.
That's a lot that I'm doing for my migraines, but it is such an extreme difference from the 24/7 severe migraines that were caused by my stroke.
You are first person who has mentioned the Butrans patch on any of the many posts that I read on three different websites, including this one.
Thanks for posting, And again, I would really like to know what strength your Butrans patch is.
Hi Sara. I'm so glad you are seeing improvement!! I've been on the 10 mg patch. He did that based on my being on 4 10/325 percoset tabs a day. I know some people have been writing in that their docs start them out at some dose and then up it but mine never even mentioned that. I'm glad I didn't have to increase it. I also have had trigger point injections and also Botox but not the usual migraine facial injections. I'm not too fond of them because of the lack of control in the neck muscles. That does come back but it is scary. I hope you continue to improve - I seem to keep getting better as time goes on. People write in about feeling "normal" and I guess that is how I would describe it - not the ups and downs with the pills. I do hope that the word gets spread that this med IS EFFECTIVE for the treatment of migraines. At least I'm in the land of the living instead of lying in bed for most of the day! Good luck to you.
How great to hear from you! Yes, we seem to be the only 2 people on the planet using this patch. My prescribing doctor at a major medical center at a University said that he thought he was the only doctor prescribing it. And yes, I think that I am also getting better with time.
I'm interested in where on your body do you get the Botox injections? You said that you don't get the facial ones and then mentioned the neck area. And it sounds like you have problems with your neck every time--am I right? If you are having trouble with your neck, I think that you should find a different doctor to adminster them.
I get them on my forehead, elsewhere on my face, the back of the head, the neck and my shoulders--a total of 25 injections. I've never experienced any neck weakness and have been getting them every 9-10 weeks for the past 2 and half years. I get a total of 225 units each time. And I really need them as much or more than I need the Butrans patch.
You mentioned trigger point injections which I also get along with my nerve block injections which I also badly need.
You mentioned that you are limited in what you can do, as I am also limited. That just means that we need all the help that we can get. So I hope that you're getting full help with your Botox injections. And how often do you get them?
Hi Sara. I receive the Botox injections just like I receive the trigger point injections, only they have Botox in them. They are in the neck, back, shoulder area. I don't get any in my face area. I believe my migraines now are truly due to muscle contraction and not true migraines, although I do have a history of migraines since my 20s (I'm 55 now). I've gone round and round between neurologists and rheumatologists to try to determine the root cause. I've been to so many doctors, I'd hate to go to another to try to get injections; plus the fact the very first injection I ever got, the doctor punctured my lung and I ended up with a chest tube in the ER. I was scared to death to even have injections after that but found a competent doctor and have since had probably 700 injections from him. I have found that trigger point injections do not have any long-lasting affects on me so I've discontinued them. I have not had Botox since last summer. But I'm getting to the point where I'm about to consider them again. I'd like to be able to do more than, for example, lift a bag of groceries and have that trigger a migraine. Don't get me wrong, I'm thankful that I can be still and not have as much pain but it would be nice to do some of the little things that "normal" people do also.
Thanks so much for writing, also. It is nice to be able to share about something that no one else understands!
My goodness, what was the doctor doing to give you an injection near your lungs!? And you haven't had any Botox injections since last summer when I get them every 10 weeks? They don't last that long. And the more that you get them, the better you are. And still wondering what did you mean by your neck muscles losing control? How bad is it? How long does it last?
And I'm suggesting that you could benefit from nerve block injections which also greatly relax the neck and shoulder area, but yes they only work for about 4-5 weeks, and I really know when the time is up. I've been diagnosed with occipital nerve migraines which are specifically worse by the tightness in my neck/shoulder area.
Is your reluctance to get the injections more often a matter of your insurance not paying for the injections? They should since the FDA approved Botox injections for migraines in October of 2010. And why not get the nerve block and trigger point injections more often? Again is it because of the money? If so, I can understand.
As to the cause of your migraines, usually the doctors don't know the cause. They only guessed that the cause of mine were from my stroke. The big thing is to get the help to reduce them.
Also, I'm wondering why don't get any injections in your face area? Are the migraines not on your face?
I would really like you to get as well as possible. That's why I appear to be heckling you. I'm sorry for that. And BTW, I also suffer from fibromyalgia.
I look forward to hearing back from you. All the best,
I guess the reason I stopped getting the trigger point injections is that they only lasted a few days and then my body has a BAD habit of rebounding in a very bad way. After my muscles "loosen" up, they will eventually clench up again. That part is excruciating (that's why I stopped going for any type of hands-on therapy). The rebound is so much worse than the original pain. It would usually send me to the ER in many instances.
The Botox injections that I've had have left me feeling like my head weighed a ton and, if say, I would be kneeling and put my head down, I would almost topple forward because I could not control my neck muscles to pick my head up. This didn't last very long, maybe a few days but it was scary. Maybe it was where the injections were located. The other thing that occured was that a very significant trigger point developed after the injections when my body was in that loose mode. It took almost a year for that to go away. My insurance does pay for most of the cost, so that isn't much of an issue. I really don't have pain in my face, except my typical migraines that are true ones do go into my left eye. Most of my muscle contraction ones are only in my neck. I do, however, believe I have some jaw involvement but he has never injected anything into my jaw or face. Much of my problem does swing around to the side and even into the throat area of my neck, which he does inject. My dr. says he's not seen anyone with this kind of involvement before. They diagnosed me with fibro also in the past, but this doc, I believe, has it right by diagnosing me with chronic myofascial pain.
Hi Sara. Just wanted to let you know that I made an appt. to get some more Botox injections in 3 weeks. Thanks for the encouragement to go forward and try to get some more relief and mobility! I really have been thinking about this for months but have been at a standstill in not really committing to anything. I will try to see if he will do some in the face area, especially around my jaw area. I am picking up my "snowbird" parents in Florida and visiting with them before heading north so I'm hoping with the warmer weather, it will help. Also, I want to try to get in to a pool and see if that will loosen me up. I will keep you posted once I receive the injections. I'm glad I'm doing this with the spring coming because I can get out more and move about a bit more. Vicki
Glad that you will try the Botox again, but would really like for you to have another doctor do it, to hopefully avoid the heavy head reaction. Not every doctor knows how to give the Botox in the face area, so you better check with the office first to learn if the doctor knows how to do that.
PHYSICAL THERAPY: I see above you mention about the contractions in your neck area. Sorry I didn't think of it earlier, but I do physical therapy exercises in my neck area, shoulder area and even the bottom part of my head almost every day which helps to relieve the stiffness which exacerbates the migraines. But you'll need to get the physical therapy to know exactly how to press into the right spots with your head at the right angle.
BUT, don't do any pressing on areas near where you've had the Botox injections for a week after getting the injections or you press the liquid out.
SKIN GEL: Also there is a skin gel that is by prescription that relieves most of my early developing migraines. The ingredients of the inflammation gel that requires a special pharmacy to mix up are: Amitrityline-2%, Ketoprofen – 10%, Gabapentin – 3%, Lidocaine – 2% and Transdermal Gel – 60 g. By prescription. I use it most days of the month. No rebound headaches because it doesn't get into the blood stream. I know of a pharmacy which will even mail it to you, if you don't have a special pharmacy where you are.
I've been in bed most of the last 2 weeks waiting for my Botox to take effect. And I've been doing more training sessions which have greatly aggravated my migraines. Even had to go to the ER last week.
I know that your migraines are going to get better.
Hey Sara. Thanks for the heads-up on the movement after Botox. I wasn't aware of that. I know after trigger point injections, they DO want you to move that medications around and keep pushing the trigger point out, to keep it from coming back (at least that's what I've found helpful). I do have exercises from physical therapists/chiropractors, etc. - I think I just need SOME movement before I try to stretch my muscles. I think the same thing happens with exercise as with injections - they want to rebound after the stretch. I will check about the gel - I've not heard of that before.
I'm sorry to hear you are having so much trouble lately! It is so frustrating at times! I went to a CPR class over the weekend to get a better position as an Aide and when it came to doing it on an adult , I couldn't even press hard enough many times or keep going for any length of time. The next day, I suffered for it also. I certainly wouldn't want to put anyone at risk unless it was a true emergency and I was the only person around. Needless to say, I think I'll stay where I'm at. Disappointing though. Hope you start feeling better soon. I'm off to Florida tomorrow. No e-mail there (visiting my 80-year-old parents). Be back in touch when I get back. Thanks for all the advice! Vicki.
Hope you had a great trip to Florida. You are in far better shape than I am. I can't begin to travel for more than 3 hours without it leading to a severe migraine, usually with a trip to the ER.
So sorry about your CPR event. It's continually difficult for me to realize that I can't do what I used to be able to do. My husband and mother tell me to focus more on the great recovery that I've made after my stroke which could have left me paralyzed and not able to speak. But I haven't come to grips with it all the time.
I'm not sure what you mean about not letting the trigger points come back by pushing into the points. How have you felt this helpful? I only found out in the last few months to NOT do any pushing into my nerve block injections, trigger point injections and the Botox injections and have found that the injections last far longer and better.
But I am interested in your experience with the trigger point injections and pressing into them.
All the best to you and let me know how you are doing.
I was complaining, rather crying to my neurologist about barely able to do much and he quickly said that he would give me a prescription for the Butran patch at 10 mcg. I have been on the 5 mcg. I'm going to wait a couple more weeks when my Botox injections aren't so fresh. I'm really at my best right now after the Botox took effect--about 2 weeks after getting them.
And you must be about a week off from getting your Botox injections. I'm so afraid that you're going to the same doc who gave you the neck problems. And remember NOT to push on the injection sites until about a week afterwards. That's what kept me from having as good results.
Hi Sara. I just got back from Florida almost a week ago and am 3 days out from my Botox treatment. I am doing very well - no rebounding like prior times. Maybe because I only had one vial of botox and didn't have as many places injected. I did go to the same doctor - just cringe at the thought of starting out with another doctor (yuck!) I did speak with him about moving the botox around vs. keeping it in one place - he said it stays pretty localized so it didn't really matter. I will definitely defer to you since you have had some bad/good experiences with doing things a particular way. I've only had a small headache since Thurs. - am hoping to start some small neck movements after a week. I did want to ask you something about the Butrans though. I've been attributing this to menopause but have read a few posts about it and haven't yet brought it up to my doc yet. I've noticed quite a bit of irritability/depression since being on this patch. But I'm also around this wonderful age where these things are part of our emotional ups and downs. Have you noticed anything with these side effects?
You also wanted to know about pushing on particular trigger points. I have heard
different things from different doctors but this has been my experience. I had a fairly new trigger point in my thigh and my doctor injected it (not the current doc I go to). He told me to continue to "rub it out" since he injected the trigger point directly and it went down some. So, I continued to rub downward for a couple of hours and that did the trick. That one never came back. Now the ones up on my neck or the ones on my back, they are harder to rub and have been there longer. But I, at least, proved what he told me to do.
I'm glad to hear you are feeling better with the Botox taking effect. I hope the higher dose of Butrans will help. Thanks for keeping in touch - it seems that we have similar issues, even though we may have underlying causes. Vicki
That's great that you didn't have problems with the Botox this time. The injections may not have worked yet so you may have better results coming your way.
I had decidedly depression and irritability issues when I went through menopause. No, I haven't noticed any such effects from my Butran patch, but I'm soon to start the higher level dose, so I'll see if it does affect my mood at all.
Hi Sara. Just checking to see how you are doing on the higher dose of Butrans?? I hope it is helping without many side effects. My Botox seems to be working pretty well - was able to do a few more things with my husband this past weekend that I haven't been able to do for awhile without it turning into a major headache. I'm hopeful that I can now maybe start small stretching exercises. How are your Botox treatments holding up? I also wanted to mention to you that I get significant relief whenever my muscles contract by holding a cold soda can to the affected muscle (actually lying down with the can right on the muscle and pushing against it). That seems to quiet the muscle/nerve by freezing it almost. At least it allows me to get comfortable enough where I can rest and possibly sleep. I keep a number of them in the refrig (the freezer seems too cold almost) so I can exchange them when they warm up. I don't know - it seems to help me. Thought I'd pass that on also. Hope you are doing ok. Vicki
I'm not doing well at all with my breathing which the literature says the Butran can cause breathing problems leading to severe medical problems including death. But the breathing problems started a few days before I went up in dose to the 10mcg patch.
It feels like when I breath out, I'm not going to be able to breath in again. It feels like I have to inhale on purpose. Obviously I don't focus on inhaling during sleep or all the time, but it is very noticeable. Plus I'm much more light headed. I'm afraid to say anything to the doctor, because then he'll take me off of it altogether which has helped me so much.
In another day, after I've finished a training session tomorrow morning, I'm going to take the patch off and see if my breathing improves.
And last night I slept 16,5 hours which is a lot more than the 10-12 hours that I usually need since my stroke. But I didn't get enough sleep for 5 days last week with a training session, being with my mother and then she died last Wednesday night which impaired my sleep for a day or two with the grief. So I don't know what's going on.
I don't think my breathing is from her death, because she was in hospice for 2 years and I grieved so many times thinking she was dying during that time. I feel that I'm not actively grieving any longer.
Oh Gosh, Sara, how horrible!! I can't even think of anything appropriate to say.....I'm just so sorry that on top of all of your pain, you have all of this emotional stuff happening, even if you have already grieved prior to this week...it still hits you smack in the face! Please be careful with this patch - this sounds scary with the breathing thing going on. But I certainly understand the need to keep the pain away also, especially with everything else going on. Please keep me posted on how you're making out. I'll be praying that things improve for you QUICKLY!! Vicki
Thanks so much for your kind words. I'll keep you posted.
My Botox injections (with 225 units) lasts about 9 weeks and the doctor doesn't want me to get them more frequently. Last time I was in bad shape for the week before the injections and then the 2 weeks it took for them to work, but other times it's worked longer. I think if I do too much, then it doesn't work as well.
Ice packs have helped my headaches in the past, but pressing the area where the migraines are doesn't help. According to my physical therapy exercises I do press very hard in various spots on my neck, lower head area and shoulder while tilting my head at just the right angle. That's supposed to help my migraines because my migraines are thought to be occipital nerve ones. And my neck and shoulders are very tight. The Botox, nerve block and trigger point injections all help to soften the muscles, but I still need to do the PT exercises every day--except for a week after the injections.
I'm interested in what activities you were able to do with your husband that was more than you were able to do in the past--if you're comfortable with sharing it.
Sara. Sure, I'd be happy to share. My husband is an auctioneer and we helped another friend do an auction. I clerked for him for 5 hours with only a short break. Usually sitting for more than an hour in a position with my head down and my arms in a writing position is bad. I also helped set up for him, which included carrying small items of furniture from one location to another. Lifting is usually really bad for me - can't lift more than 10 pounds. The thing that my husband and I did was that I went fishing. The first day we fished for about an hour - this is continually casting and reeling in. Considering the long day of setting up for the auction, fishing and then the auction (a 12-hour day, and no headache) I was thrilled. I went back the next day and pushed my luck a little bit by sweeping the floor. That is usually bad and I should have known better but I tried it anyway. Right after that, I did notice my neck getting tight. I fished for about an hour after that and then we traveled home. Later that night, I did get a headache. But, I truly feel it wasn't from the fishing. That is exciting because I haven't been able to do that for years! I was a BIG tennis player, very active, outdoorsy. Resigned myself to doing other things like drawing, playing guitar, putting puzzles together,which were things that I wanted to learn. Things got so bad that even those things were too hard on my back and neck. So, I've been sitting around alot except for walking - seems that my lower body hasn't been affected as much as my upper.
What are some of the things that you're able to do? When you say your Botox is taking effect, can you FEEL something different? I really haven't felt anything different, only that the muscle in my neck doesn't seem to be as tight. Today was the first day, though, that my head felt almost too heavy for my neck muscles. Maybe this is the sign that it is taking effect for me. Maybe I say that because my neck has been so tight for so long I don't know what LOOSE is supposed to feel like. I don't know???Anyway, I don't care, as long as I continue to be able to do more without headaches. Vicki
Sara, I know it has been a while but I just joined and I was given Butran for neck, back pain ( My doctor said that the neck pain was contributing to some of my headaches which are severe at times.
Question, do you or anyone on this forum know if I can put the Butran patch
directly on my forehead above my eyes. I have throbbing pain elsewhere (top of head, back of head, side of head) but this is what is hurting the most right now and also my vision is being affected
Any comment from anyone would be greatly appreciated.
I would not put it on your face. The Butrans patch works best on your migraine or other areas of your body best when it is applied to your upper arms, upper back or upper chest area. It is not a local pain killer. It does not work directly on the area where it is placed. Plus, the patch can cause redness where it would be more likely on the more sensitive skin on your face. I have so much trouble with my skin breaking out that I have to put them on my legs where they still work for my migraines.
Vicki, So sorry that I missed your response until the next one was posted. I'm sorry to hear that your head felt heavier than your neck muscles. This is a possible side effect that shouldn't happen. My neuro-opthalmologist has never had this happen, but the neurologist I consulted before that said that he had one patient that this happened to, so I kept saying no to it. You will notice a difference in your migraines if it is working. If not, then ask how many units are being used? My first time with 100 units did nothing for me. Now at 245 units, I got great relief, except that the last 2 times I haven't gotten as much help with it. The doctors all say that sometimes it doesn't work, but that doesn't mean that it won't work again. And the doctor said that my units can be raised more.
Are you still getting the Botox injections? Are you still able to do more without getting your headaches? Please let me know and again, I am so sorry I missed your posting waaaay back. Sara
If so, any side effect or withdrawal effects? Please be sure to mention if you were changing any other medications at the same time. I'm considering getting a prescription filled for it. Thanks for any comments would be much appreciated.
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