I'm new to the group so don't know quite how this works. Just wondering if anyone has tried mexilitine for pain. I haven't but have heard of it. I'm just lost as docs don't know what to do. tomorrow I'm scheduled to have a skellate ganglion block to see if that will help with burning pain in scalp,face,hand,back. doc is not real hopeful. I'm scared.
Hello Danni,
I know there are people who have tried mexilitene but clearly none of them have noticed your question.
If you put mexilitene into the search box on the Discussions page you will see it mentioned many times.
Nel
Hi Danni,
Just saw your question- im sorry. As time urges you I have sent you a message to inbox. As you are due for the block if you want to speak on phone it may be quicker. I am on Mexiletine for 8 months now, and it does take edge off. I am a real advocate for sodium channel blockers and believe that they are the way to go. The new Xenon drug will be a sodium channel blocker so :)Cardiotoxic effects are minimsed as long as your Dr monitors you with ECG, bloods, BPressure etc.... All medications have risks.
We have a massive post if you search called sodium channel blocker therapy , and posts on IV lidocaine and Mexiletine.
Just to jump through this im attaching some great research on mexiletine/lidocaine , which might help you.
Please feel free to ask me anything you wish on this treatment.
Hang on in there!
God bless
mads
207-TEA2012BROCHURE.pdf (1.65 MB)Hello Danni,
I am sorry for the late reply here. My computer was out of commission for a few days but I'm back with a good as new computer!!!! I am on Mexiletine now. It has been about 5 months. I have also had Lidocaine infusions in conjunction with the meds. I have defiantly seen improvement but it isn't gone by any means. I am still slowly increasing my dose hoping it will show even better improvements with a little higher dose. So far I haven't had any side effects but I know if you do they can be quite dangerous so close monitoring is important. Every one responds differently so you can't really know until you try it yourself it is safe for you to do so.
Hope this helps
Alina
Thank you for replying. I appreciate all the help I can get.
Danni
Veerla said:
Hi There,
I have tried Mexeteline a couple of years ago. It was really hard to get it (here in the Netherlands), because it is not officially registered on the drug/medication list. Finally, after quite some letters from and to my insurance I got it approved. I had to try it for a couple of weeks, and every week my GP had to do an ECG (elektrocardiogram ). This, because mexetiline can cause heart interferences/ failures. However, nothing of that nature happened so I was able to continue treatment with this drug. After a couple of weeks I had to acknowledge that it didn’t help (at all). therefore, I quit the treatment.
HOWEVER, every case is different, and everybody reacts different to certain medications and treatments. So my advice to you would be to try it, be sure your heart is monitored weekly, and keep your hopes up! IF, and it’s a big if, this doesn’t help you either, you move on to other medications. Just ask on this forum what they are using and what helps them. Please note that some people prefer to answer this question in a personal mail (which is enabled by this forum), because a lot of people take strong and heavy medications and are cautious to say out loud what they take (for instance opiates). Most importantly, keep your head up high, and try to see a specialist who knows a lot about EM. Good luck with this whole process and feel free to ask questions.
Best,
Veerla
Mads
appreciate your help
Thanks Dannie
mads said:
Hi Danni,
Just saw your question- im sorry. As time urges you I have sent you a message to inbox. As you are due for the block if you want to speak on phone it may be quicker. I am on Mexiletine for 8 months now, and it does take edge off. I am a real advocate for sodium channel blockers and believe that they are the way to go. The new Xenon drug will be a sodium channel blocker so :)Cardiotoxic effects are minimsed as long as your Dr monitors you with ECG, bloods, BPressure etc.... All medications have risks.
We have a massive post if you search called sodium channel blocker therapy , and posts on IV lidocaine and Mexiletine.
Just to jump through this im attaching some great research on mexiletine/lidocaine , which might help you.
Please feel free to ask me anything you wish on this treatment.
Hang on in there!
God bless
mads
Alina
Thank you for your help
Danni
Alina Delp said:
Hello Danni,
I am sorry for the late reply here. My computer was out of commission for a few days but I'm back with a good as new computer!!!! I am on Mexiletine now. It has been about 5 months. I have also had Lidocaine infusions in conjunction with the meds. I have defiantly seen improvement but it isn't gone by any means. I am still slowly increasing my dose hoping it will show even better improvements with a little higher dose. So far I haven't had any side effects but I know if you do they can be quite dangerous so close monitoring is important. Every one responds differently so you can't really know until you try it yourself it is safe for you to do so.
Hope this helps
Alina
Hey Danni , I’ve been informed that the last reply to your question was 753 days ago. I’m going to reply anyway. So there web site…hah! I love this site having a search icon and I use it occasionally to check up on further info on Mex, Lyrica, pain management etc. so I typed in Mexilitine and there you were. I have 2 gurus and Mads is one of them. She has held my hand across the pond countless times. I see she gave you some great info. I’ve taken mexilitine for about 3 or 4 months. It extends the efficacy of the lidocaine IV. The EM has been quieter. A daily flare, but have time to run errands. I hope you have found something/s to help you. What a really weird syndrome. Pat/aka Satochan
Wow I almost forgot about this. Thank you for responding. Two years ago was brutal but I’m doing better. I haven’t found an MD in our area who will do IV lidocaine or prescribe mexilitine but the meds I take have kept things under control. Not great but a lot better. Yes this is really weird disease. Never heard of it until two years ago. Glad to hear you have some relief.
Pat - forgive me if I replied twice to your post. My computer is acting up so I’ve had to reply again to some.
Danni
Hi Danni, woke up burning and when I’m in pain I come to 2 EM boards to not feel alone. Re your situation on Mexiletine , do you think it would help to print up some informational documents on this drug and give to your doc? If he/she is a caring doc, the info will be gladly received. If he/she is an arrogant a*#hole there will be no interest at all so fire the “I’m in it for the $” doctor. There are a couple of singe sheet articles on mex and pain and I hope one will be well received by your doc. My EM Doc is rather stuck in his ways,but thankfully my Neuro of 25 yrs was thrilled to have a patient who had something he’d never heard of and has been giving me the lidocaine IVs and wrote a scrip for mexiletine. He has been my life saver. I’m still burning, but less.
I hope and pray that your quality of life has been improving. 
Hi Pat
So sorry you’re doing poorly. It does help to know you have a place to go where we all understand. Regarding the single sheet articles on Mex, where would I find them? Are they here
somewhere and I don’t know where to look? I like my doc but he has never dealt with anyone with EM. I’m just happy he has me on a med combo that helps. But I would be interested in any info. Thanks for sharing. And hope you’re feeling more comfortable soon.
Danni
Hi Danni, Carter has been my goto guy on mexilitine. I just read his past posts. Since we’re using it “off label” there’s not really much about it treating EM. drugs.com I’ve found to be a pretty thorough site. If I find anything pertinent,I’ll get back to you. I think it was my personal EM guru Mads, who told me about its potential to extend the effects of the lidocaine infusion. So far, the lidocaine IV has been the most helpful treatment for me. Am burning right now, surprised the letters aren’t in RED. Hope your being cooler P
Hi Pat – thanks for responding. Yes if you find anything please let me know. I’m really doing well right now. Not pain free but the burning is just a mild sunburn feeling not the acidy,fire it has been in the past. Just mainly in feet and hands as opposed to all body as before. At least I know that my resources have not been expended as I have not tried Mex and lido drip.
Take care and hope you are able to find comfort. I know what you mean about typing. The burn gets worse
Danni
Hey Danni, I think I’ve hit the “sweet spot” with drugs. I wake up not even thinking about EM and for the last 2 weeks have lived almost like a normal person. I was going to get a lidocaine IV this month, but the burning isn’t like it was. I know the IV can be hard on your heart, so if it ain’t broke why fix it. Went out to dinner with friends last week and was very embarrassed that my fingers were trembling. Checked on Mexiletine side effects and sure enough trembling fingers are a side effect. I was afraid it was Parkinson’s and was very relieved to find that side effect. I didn’t take the mex for 24hrs and the trembling stopped! I was taking 150mg 3X a day. Now I take it morning and night. If I’m on fire, I’ll take the midday dose just to feel like I’m trying. I noticed the shaking again today around 3 and may bypass the evening dose. The trembling fingers are almost as steady as normal now. I’m also taking 100mg of Lyrica. Was taking it 3X a day and am experimenting with taking it only am and Pm. It has such dastardly side effects. So much with EM is experimentation. Hope the note finds you well and COOL.
Hi Pat; Good to hear you’re feeling better. Sometimes it’s hard to remember what it’s like to feel normal. But things are going ok right now. I’m afraid to alter my meds as I can live with my new “normal.” In the past I have played around with dosages and really regretted it, big time. I guess I’m ultra sensitive to these meds, especially Lyrica. I hope you’re able to limit the IV’s and still stay comfortable. The side effects of these drugs can be so bothersome. The first drug I tried four years ago was nortryptiline. It decreased pain but caused jittery, trembly, shaky feeling so not taking it now. But that was just the beginning of all the side effects of the drugs to come.hope things continue to improve for you.
Hi,
I hate things like nortryptiline and amytryptiline. You may already know that they increase the amount of noradrenaline and adrenaline and these are the fear and fight hormones, hence the reason for those side effects you had.
Glad to see your message. Hope you’re improving daily. Patricia
Hi Danni, my dr who gave me the lidocaine drip doesn’t take insurance and he charged me $700. OUCH. So I won’t go again until the flares start up bad again. I can live with a level2 pain. The CBD oil has changed my life! Oh how I hope you’re doing well.
Patricia (aka Satochan)
Hi Patricia,
Is it really that long ago that we spoke! That message you referred to was on December 16. If it is that long you won’t know that my amputation was done wrong and I haven’t been able to get it sorted out.
Plus at the end of May I had a small heart attack, OK now they put a stent in.
Julia