To Mexitil or not?

General What's New With You?
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Hi. any comments appreciated.

I have just turned 67 and am due to go back to doctor for a regular appointment.

I used to flare at nights and have had quite a lot of foot pain. The main problem was getting off to sleep. The local hospital diagnosed me with EM.

I am presently well controlled on 2x paracetamol (Tylenol) 500mg with codeine 8mg, 1 tramadol 50mg, and 2 ibuprofen 200mg, or instead of ibuprofen (advil) I use 1 naproxen 500mg fast acting. I take these at 5pm each day. Occasionally I take an omeprazole to protect my stomach from the NSAID ( non steroidal anti inflammatory drug) At 9pm I take 2 further Tylenol and 2 Clinicians REM sleep, a proprietary medicine with magnesium etc. If I have been too active in the day and am still in a lot of pain I take an extra tramadol 50mg or an extra codeine 30mg and have a cup of tea with 2 slices of toast with manuka honey, which seems to do the trick. Very occasionally I will take triazolam 0.125mg or half a midazolam 7.5mg if I know I have to crew for a fishing boat the next day. I am very careful not to get hooked ( pun!) on these.

My concern is the long term damage the ibuprofen or naproxen may be doing to my stomach or kidneys. My blood pressure is normal and my health and weight are generally good. I am active with a lot of fishing, in the surf, garden, or walking short distances. I avoid all alcohol and non smoker. I visit a lot of people to offer any help I can give and the older ones appreciate this. I am married and have 7 grand children living close nearby. I eat very healthily with a lot of fresh fruit, vegetables, nuts and fish.

Being a retired pharmacist I have tried every other medicine known to mankind (ha ha) including all the usual suspects, amitriptyline, misoprostol, gabapentin, Lyrica, aspirin, Celebrex, etc etc. In New Zealand prescriptions are free. ( Of course we have a slightly higher tax rate to pay for this) I had to give up work because of side effects of gabapentin ; I could not think clearly enough to give patients total concentration.

I have not as yet tried mexiletine or propranolol. What do you think? Worth a try on just mexiletine, or better, or even essential, to have propranolol as well ? Do the risks outweigh the benefits? Should I just stay on what I am stable on at the moment and risk kidney damage or stomach damage? The evidence seems hazy at best, but I would appreciate your thoughts.

I am also trying Bobs protocol as well to see if this helps. It seems to me that those who have found success are young, fit and trying very hard to beat EM.

Thanks to those who made this site possible and give up so much time and effort to help others.

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From my own experience, I think you would know pretty quickly whether mexiletine is going to work for you. For me, it was like turning off a light switch. The change was dramatic and occurred within just a couple days. I went from having multiple uncontrolled flares throughout the day that only ice could stop to never having one again.

I think of greater concern for you than NSAID side effects is that you’re taking 2 narcotics daily with an occasional benzodiazepine to sleep. Are you certain the NSAIDs even do anything? NSAIDs are typically ineffective for EM because the erythema caused by EM is not inflammation. I once took diclofenac (which I’m sure you’re familiar with), a much stronger NSAID, and found it wholly ineffective against my EM. Ibuprofen and naproxen were not effective either. I would think the pain relief you get is likely from the narcotics (tramadol and codeine) and perhaps the paracetamol.

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Thanks Carter. How important do you think the propranolol is with the mexiletine as a combination?
Or should I just try the mexiletine on its own?
The NSAID ( eg naproxen) seems to work for me as a combination with the others, presumably as it works in a different way. I have tried eliminating it but will try again.

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This is a difficult question to answer with certainty since I took them together for the first few years. However, I would say not very important if only because of the fact I started propranolol first and was unsatisfied with the results. Flaring was still largely uncontrolled when I was on propranolol alone. I felt it provided only modest benefit. Mexiletine was then added and that was a home run.

I did try to stop propranolol a few times in the first few years and thought it very modestly worsened symptoms. I finally was able to eliminate it entirely last fall. I did suffer rather severe withdraw symptoms for about 10 days after stopping propranolol (including rapid heartbeat, nervousness, panic attacks, insomnia, depressive thoughts, and anxiety). Propranolol also caused some side effects while taking it I really didn’t like, so I was glad to stop it.

My verdict? I’d try mexiletine alone first and then add in propranolol extended release after for a few weeks if you felt mexiletine was ineffective on its own.

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Hi Kiwi,

One thing to note, if you already suffer from Raynaud’s, propranolol will make your extremities even colder as its one of the side effects.

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Mexiletine has a narrow hit rate but when it does, it seems to really help, myself included. I also took it with propranolol for nearly two years but for a different reason. I take a beta blocker for high blood pressure but I switched to metoprolol last spring because I didn’t like the side effects of propranolol. The one thing to be careful of with mexiletine is cross-drug reactions. It is an anti-arrhythmic first and foremost and a pretty good one at that. It might be very dangerous to try to start mexiletine while still using opioids, benzodiazepines, and sleep supplements. Your physician might not feel comfortable prescribing this with even one of these medications being apart of a daily regimen but it is worth talking about for sure since it has greatly helped some individuals.

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I use Mexilitine . Not convinced it has helped to the extent I was hoping. I just added Amiplodine since i have Raynaud’s too and EM Group in UK that is amazing thinks I am a constrictor. I just moved up to 5mg of it… I really think it is helping

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Jackson overdosed on propofol, a common anesthetic used for general anesthesia in major surgery. Propranolol is a beta blocker used to treat high blood pressure.

They’re not the same drug.

Md’s are not gonna want to inject mexiletine into your bloodstream.

Mexiletine is not an injectable drug. It is taken orally. It is the oral analogue of lidocaine, which can only be given by injection or infusion.

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So much of this is misinformation so I would like to provide some clarity. Propofol is an anesthetic used for surgery and is never used for chronic pain because it is lethal when used for that purpose (yes, that is how MJ died and why his physician had so many legal issues afterwards). It is commonly used as an anesthetic during pre-op for initial sedation. Propranolol is a beta blocker. Beta blockers are the 5th most common medication prescribed worldwide and are considered a first-line treatment for high blood pressure. The only thing these two medications have in common is the prefix, they are completely different medications. Mexiletine is not injected, as CarterDK stated. It is a common anti-arrhythmic used for ventricular rhythm disorders. It works by blocking voltage gated sodium channels. There are some types of EM that are caused by overactive voltage gated sodium channels, for these cases mexiletine can essentially fix the issue. It is contraindicated in patients who are taking any medications that can alter heart rate, including benzodiazepines and opioids.

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I have afib so I cannot take another anti-arrhythmic I also take metroplol for heart rate stability. Early on I tried all the usual protocal none of which worked for me. I take cyproheptadine which helped greatly after being on it for a month. That combined with magnesium and aspirin are about the only thing that works for me.
I understand that due to what causes the disorder, which is hard to know, that is what, makes the difference in what works. I know the aspirin makes a huge difference for me because I have to go off a few days sometimes because of stomach issues. When I do my flares return. I hope you find what works for you.

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Thanks to all for comments. I have made the appointment for next week so will keep you posted.
Crewed twice since I last wrote, for two different skippers. Both excellent fishing. I note it takes me 3 years to get through 10 midazolam 7.5mg tablets. I only take a half as a last resort. My doctor calls them my Michael Jackson medicine.

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Mexiletine is the only medication (I’ve tried many) that has helped me. I take no other meds for the EM. I take 300mg two times a day. It has helped with swelling and pain. I still have to be very careful about what the ambient temperature is.
You will probably have some side-effects.

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I started mexiletine 150mg on 17 February after an ECG test that was normal. I have tolerated the 150mg mexiletine well, and increased the dose to two at night ( 300mg ) total daily dose, on 22 February. At that point I feel I have had good improvement with less flares and pain at night. I generally put up with discomfort during the day. It was my intention to then taper off all other medications, but I forgot I was 67 and thought I was 21 again and overdid some physical work on a farm, plus had some severe emotional issues to deal with trying to help a person in distress. The upshot is I didn’t sleep well, got very overtired, and stopped the mexiletine temporarily as I felt I didn’t sleep as well on it. Yes, I know, stupid, my wife just rolls her eyes. Here we go again.
I will restart the mexiletine as soon as possible as I have severe toothache as well and need to deal with that. Maybe getting long in the tooth and too much flossing.
I would recommend mexiletine. In 40 years I can remember only one patient on it and they did not take it for long. But that would have been for arrhythmia and not ERM. I only had the courage to try it because of this website. Thanks.
I would be interested if people who take mexiletine have lost weight. It has potential as a weight loss medication with a few possible molecule changes.

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Just been to the dentist, the tooth pain appears to have nothing to do with the mexiletine. I have started the mexiletine again, 150mg at night, seems to have helped even the first night. The doctor also suggested I consider carbamazepine, (Tegretol) another sodium channel blocker. I chose mexiletine as less drowsy. The problem with carbamazepine is I have seen some side effects in patients over the years and I probably have a bias against it. Still mulling it over, if I take the carbamazepine at night instead of mexiletine, the drowsiness may not matter, and perhaps carbamazepine is safer? Be interested in any feedback.

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The CAST study looked at individuals with a recent myocardial infarction (6 days to 2 years prior) and found class I antiarrythmics increased the risk of sudden death mortality in this very specific group. Likewise, class I antiarrhythmics have been found to be proarrhythmic during heart ischemia in animals.

If you don’t have heart disease there really isn’t evidence to suggest mexiletine is unsafe.

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I talked it over with the doctor and we decided to try Tegretol, ( carbamazepine) I found it just made me too drowsy as it takes too long for the body to metabolise this medication.
Back to mexiletine 150mg,now morning and night, seems to be helping but too early to say. Seems to be reasonably well tolerated.
Some excellent feedback coming through on various subjects, all very interesting.

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Now been diagnosed with a bursa between 3rd and 4th toes on left foot. I got this from a surf injury from wearing booties in winter too tight in flippers ( fins) using a knee board in storm surf. This is relieved by using a metatarsal bulb under my foot about 30cm back from the toes.
In the meantime getting good relief with mexiletine twice a day.
Fishing been excellent with snapper, released a large one for the future generations.
When I get overtired I also use pregabolin, paracetamol, codeine and tramadol all in small doses, combined.

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I notice with the mexiletine in am getting some reflux at night. I occasionally take an omeprazole or suck a double strength Gaviscon peppermint flavour. I have also found a cold pillow at night between my knees helps cool my legs, feet and helps me sleep.

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