There are a multitude of independent variables in the human body and you need a consistent sample to determine the efficacy of a prescription drug. Just take the prescription each day as prescribed and let the chips fall where they may. You need a consistent, sizable sample in order to rule out a placebo or nocebo effect. If you experience serious side effects, contact your doctor.
I took a 1/2 (just poured out 1/2 the stuff and resealed the capsule).
Mexiletine capsules are not intended to be split. They specifically state, “CAN NOT BE SPLIT. Must be taken in existing form.” You should inform your pharmacist you are splitting these capsules and seek their counsel to the effect.
I just decided it was best to start this when I was going to be home and start in the morning so I could tell for sure whether it was impacting flares or not. I had only taken a dose for 2 days, stopped for 2 days, and then restarted on Monday, and I will to take daily from this point forward and as you say let the chips fall where they fall. Just wanted that to be a time period when I wasn’t traveling. I’m home for a couple of weeks now so it’s all good. I shouldn’t have started when I did, realized my mistake, and corrected. Doesn’t mean I will be haphazard going forward.
At to splitting, I am not splitting the powder into a different capsule. I talked about this with my doctor and we both agreed it was probably wise to start at 75mg instead of 150mg to minimize side effects. So you separate the capsule, pour out into the sink 1/2 of the powder and then push the capsule back together and take it with a glass of water. I will do this for 1 week, and then go to the 150mg from then on. There is no risk there as the capsule is easy to push back together into it’s original state. There is no seal or anything that you are breaking. My doctor actually felt more comfortable starting in this fashion. I generally want to rush things, but am trying to be patient in the manner.
I do appreciate your concern, but think I’m on a good path and I’ll update once I get to a full dose. Fingers are crossed but trying not to get my hopes up too much.
I suppose we are just of different minds. For better or worse, I’d want my answer sooner than later. I wouldn’t delay regardless of what else I had going on.
As for splitting the capsules, I was just relaying the information on the packaging. The medication itself is not guaranteed to be universally distributed in powder contained within a capsule, which is why instructions generally advise against splitting them.
I understand and I wanted that as well. I’m working with someone with more experience than I that is on Mex and both that person and my doc advised starting slow. I’ve had this for 11 years. One week isn’t going to make a lot of difference and if I can limit side effects that’s probably for the best. I’m just hoping it works or at least helps. Lyrica was my savior 10 years ago. Has kept me off disability for a decade but since I broke my leg, that foot has not been near as good. Hopefully this was all for a reason and Mex actually gets me better than I was before. Honestly I think it would have been fine to start at 150mg. That is the lowest dose made. But I don’t think this will hurt anything one way or another. In a few weeks I’ll know. Again, good advice from you and if my doc was not on board I would not have done it.
Here’s a potential other plus. There are some studies showing a decrease in tinnitus with Mex. Man if I could get my EM and tinnitus down I’d throw a party for the ages.
Dear G, I, too, have tinnitus in my right ear. Very rarely it’s quiet, but most of the time it’s a constant hisssssssssssssssss which is MUCH easier to live with than the high pitched tone it was 30 years ago when it first started. Mex hasn’t decrease my noise but I’m surely glad it has decreased yours. If ever you feel like you’re going insane because of the noise, I’m here to talk to. Patricia
Oh, I wasn’t saying Mex had helped my T. I haven’t been on it long enough to know. Just that I saw some studies saying Mex could help T. Mex is helping my EM quite a bit. Once I get to full dose, I’m pretty hopeful I’ll be the best I have been in years. I dream of buying a pair of tennis shoes. Haven’t bought any in a decade, but that’s a dream we all have. I love to hike in the mountains. It was my favorite thing to do before EM. I’m actually hopeful this could happen this summer. I’d be awesome.
That’s great! I’m so glad to hear that! The doctor who put me on it said it was the medication that provided the best chance for success. It still seems like something few people here end up trying.
@CarterDK Do you monitor your liver enzymes? Any issues there? I think Mex is helping quite a bit during the day, but not as much at night. I’m still taking 75mg 2x a day (breakfast and dinner) so maybe once I’m on 300-450mg this will get better. I’ll up it to 150 night and 75 day on Friday and then 150 2x a day in about 10 days. I’ll have a better feel then. So far no side effects so that’s been good. I saw one study where 40% of people discontinue due to side effects so why I wanted to work this slow
No and no. I’ve had no side effects other than heartburn, which only began after 6 months and occurs if taken with inadequate food or drink. When taken with milk and a meal, I don’t have a problem. I have no known allergies and have never had a reaction to a prescription drug that required me to discontinue use.
However, I’d be remiss to not mention I’ve always taken mexiletine with extended release propranolol. I was taking that prior to beginning mexiletine therapy. I’ve tried stopping propranonol on multiple occasions and concluded mexiletine doesn’t work quite as well for me without it.
@CarterDK Do you know the relationship with the Propranolol? I tried propranolol a decade ago by itself, but it didn’t do much for me and I discontinued. I don’t think it hurt, just don’t remember it doing anything. Wonder how it works with Mex? I suppose it relaxes the blood vessels. Last night was really the only bad night I’ve had since starting on Mex over a week ago. Days have been great and nights some flares but not as bad as usual. Last night I did too much but the flare I got lasted a long time. I’ll keep monitoring and I see a specialist in 2 weeks.
I don’t really have any idea why it seems to be beneficial. Dumb luck? I only tried propranolol because I had some in my closet and it was on Dr. Jay Cohen’s list of potential EM medications. It was low hanging fruit.
@CarterDK Just an update. I now take 150mg/3x a day and doing well. It’s been 2-3 months on this dosage. I mean I still flare, but come out of flare much easier and flares are markedly less. Usually if I just get in a recliner and blow air over my feet with a little 4" fan I can get the flare out. I’ve probably only soaked in cool water 2x in the last 3 months. Wondering do I stop at this dose, or go 200mg/3x a day. How did you decide to stop at 450/day?
My doctor set the dosing. He told me to take 150 mg once a day for a week, then twice a day for the second week, and three times a day thereafter. Because it was successful, I increased the dosage slightly ahead of that schedule. Since I sometimes have difficulty spacing my meals properly to take 3 doses per day, he subsequently said I could take 2 or 3 doses per day. If I miss a dose and only take 150mg twice a day, it doesn’t make much difference. I get the vast majority of the pharmacological benefit at just a single dose per day. The add on doses are more finesse.
I have just started mexiletine. Wish me luck.
I’m starting at 300mg split twice daily.
I’m 30 years old with no other known medical conditions. I have every test under the sun and have been to multiple specialists . I work at a major teaching hospitals and saw some of the best docs around. I have seen hematology , Nuerology , anesthesia pain specialist, cardiologist whose specialized in autonomic dysfunction, 2 rheumatologist. I have learned a lot. Based on clinical symtoms I do have EM .
As per mayoclinic the following must be present for diagnosis to be made.
Red hands or feet
Pain
Increase in skin temp.
If u have symptoms elsewhere but not in your hands or feet they prefer not to call it em.
EM has some localized versions also .
Red ear syndrome and red scrotal syndrome.
My symtoms are primarily in feet and hands but I do have the other two symtoms also. My symtoms are relived by cooling. My symptoms are mild becuase I can still work( it’s 65 degrees all year in the hospital)
I have tried many meds with little luck.
Carter’s post turned me on to mexiletine which I already knew was promising but didn’t think it applied to me. After ruling out all known secondary causes I decided to go back to the drawing board
I’m taking carvidilol
Amitriptiline
And now mexiletine.
I have only been on it for 48 hrs. I do have some side effects which I hope disappear after a few weeks. I take with food and small glass of milk. I’m getting some brain fog and feel spaced out . It’s not to bad though. No issues sleeping . My target is 600 mg per day or less if therapeutic dose is reached. People have taken 900 mg a day so I’m not to worried . Also I asked 3 doctors for mex which all said no( they didn’t know what it was or had never prescribed it before) Carter sent me all the research he had and I showed it to the cardiologist and told him it was not unreasonable to try a trial of it . He agreed . He treats autonomic dysfunction and has seen em many times in those patients and idiopathic cases as well. He treats many people that belong to TEA including the president.
Carter, because Mexilitine is a ventricular cardiac med, and hasn’t been used in over 10 years due to it’s side effects, my cardiologist and neurologist insisted that I have an ekg before they would administer the med. What type of side effects have you encountered?
After a few months of usage, I found it could cause heartburn if taken with inadequate food. (That was the first time I’d ever had heartburn. I went to the doctor for it, not fully recognizing what it was.)
I’ve not had any other side effects.
EDIT: I had a battery of heart tests (including an EKG) a couple years prior to starting mexiletine after a syncope episode. I went to the ER (to check for concussion) and the tests were performed to rule out the possibility of an aortic dissection. So my chart included all that information when my doctor prescribed mexiletine.
Hey Carter,
The Mex side effects messed up my BP and my GP sent me to a cardiologist. Sure am collecting a lot of specialists because if EM. I decreased the mex from 150mg X 3 a day to 2X a day. afternoon and evening flares are about the same and my BP is more normal. It’s normal during the day and way up at night. I’m at the point I just don’t care anymore. Patricia
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