Mexiletine prescription. anyone try this?

i am un-diagnosed with EM but my doctor says if Mexiletine works than i definitely have EM. I will be trying it soon but im curious if anyone has had any experience with it before?

Hello Deon.

I am currently on Mexiletine treatment along with Lidocaine infusions. I have been for about 9 mo months now. I have noticed a difference . It takes the edge off I like to say. It hasn't made me better like normal. It just makes the pain I still have when I have done everything I can lifestyle wise to minimize it more bearable. It helps me i guess with the milder sunburn type burning. It hasn't helped with the electric burning needles or the sharp stabbing or cramping and the most severe burning like you are actually on fire still happens too. These things tend to happen only when I am trying to walk around or go someplace warm. If I am just sitting in my cool house I still get EM but it will be more of a sunburn feeling and Mexilietine has helped quite a bit in that respect.

I think it is because Mexileitine works with the neurological sensation of burning but once the swelling starts these may be more mechanical pains from the inflammation itself or from what else the swelling is applying pressure on . Just a theory any way.

Now that you know how it has effected me. I just wanted to let you know what I know about it in general. I know there have been cases where significant improvement has been achieved. Once again ....my theory here.... I think it may relate to the severity of the EM. If someone has EM that is less severe where they have burning sensation but it doesn't cause your feet to swell so much that you can't walk any more or sausage fingers I like to call them. It might be even more effective because you are only fighting a more neurological pain than that and a more mechanical pain such as inflammation. I

I can not stress this enough... I am not a doctor , this is just my experience and my crazy theories I can't help but create! I can't help but always try to make sense out of everything. Everyone's EM is different and responds differently. My crazy theories are based on my case alone! How often are theories based on one incident usually right???

I also want to make sure to let you know these meds are not to be taken lightly, They can have some pretty serious side effects. For me it was worth the risks involved. Not everyone gets these side effects and I am sure a great many do not. I so far am good. I get tested regularly and my heart is just fine. I just wanted to make sure you knew to read about them so you could make a more informed decision.

I hope this helps you.

Take care

Have you tried aspirin Deon? I would have thought that aspirin, which can work to reduce swelling and the severity of flares, would be a better first test. I take only 75mg as it clashes with my Warfarin but I know some people take 4 times that 3 times a day. To quote Alina, I am not a doctor and this is my experience only. I haven’t tried mexiletene because all medications I have been given to target EM have made me feel so woozy and I am reluctant to try it.

thanks for the responses guys. taken them both into consideration

Nel, i tried aspirin. It didnt help :(

Veerla, yes i have to get a EKG of my heart before i start the drug. and no i have not done those tests except blood tests. i will take a screenshot of the tests you have said and i will tell my doctor about them thank you.

Deon, re Mexiletine

Most of community will tell you that im an advocate of the sodium channel blocker therapy. What makes it more significant is that channelopathy research and new treatment developments are heading that way. Positive response to mexiletine when used for pain found is many neuropathic/pain disorders - e.g. CRPS/RSD. Also, many EM'ers do NOT respond to mexiletine or lidocaine (sodium channel blockers). EM diagnosis is based on clinical presentation and patient questioning. Above i have briefly listed other tests which assist diagnosis but none are specific EM tests. No known test for EM exists.

Links to posts and research

http://www.livingwitherythromelalgia.org/forum/topics/sodium-channel-blockers

http://www.livingwitherythromelalgia.org/forum/topics/mexiletine-oral-analog-of-lidocaine-lignocaine

God bless

Hi Deon!

Did you find any relief with mexiletine? I am young with primary EM (likely caused by neuropathy, according to some skin biopsies I recently had), and mexiletine has actually made an impact! Most days are pain-free at the moment. I'm not climbing mountains in 100 degrees or anything, but I'm able to walk around when it's over 70 degrees now. I've been taking 150 mg three times per day.

Best,

Grace

nice to hear it is working for you Grace. My General doctor ended up saying to me that he advises me not to take mexiletine because it could do more damage to me then good. He mentioned it could mess up my heart, and my EM is very mild so the cons sorta outweighed the pros to it. So im taking nothing for my EM right now and just avoiding triggers and doing my best

I wonder if people with heart conditions can do sodium channel blockers?

mads said:

Deon, re Mexiletine

Most of community will tell you that im an advocate of the sodium channel blocker therapy. What makes it more significant is that channelopathy research and new treatment developments are heading that way. Positive response to mexiletine when used for pain found is many neuropathic/pain disorders - e.g. CRPS/RSD. Also, many EM'ers do NOT respond to mexiletine or lidocaine (sodium channel blockers). EM diagnosis is based on clinical presentation and patient questioning. Above i have briefly listed other tests which assist diagnosis but none are specific EM tests. No known test for EM exists.

Links to posts and research

http://www.livingwitherythromelalgia.org/forum/topics/sodium-channe...

http://www.livingwitherythromelalgia.org/forum/topics/mexiletine-or...

God bless

My doctor recommended you need a healthy heart for mexiletine, and im perfectly fine with taking no medication because my EM is tolerable. I can handle it, its hard in some situations but its bareable right now. If my EM got way worse i would definitely look into medication