I did the whole in-patient thing at Jefferson and they decided to change my meds entirely. As part of my daily medicine, they put me on Mexiletine. I am under the impression from the doctors that it is as close to lidocaine as I can get in a pill form. They are keeping me on my daily topomax, but halved it from 400mg to 200mg.
Anywho, has anyone taken this before? I have found very little information about this being used for migraines (though it is). I have to go for a blood test in about a week to check my levels. Just curious what side effects you may be having or had. So far, I just can’t poop. LOL. Of course, I was that way in the hospital on the lidocaine infusion too. Oh the joys of migraines and the meds you take…
Thank you for your question and welcome to the discussion forum! You’re lucky to be working with world class migraine/headache experts at the Jefferson, good for you!
I’ve not taken this medications but hopefully others will be along shortly to share their experiences with you. I hope you do well with it.
I have a little tip for constipation if you’re up for it. I took methadone for 3.5 years for chronic head pain and had this problem. I finally found Yakima Valley Anti Constipation Fruit Paste from CancerLynx that completely resolved the issue. One tablespoon a day was all it took!
Here’s the recipe. I have permission to share this as long as I meniton CancerLynx!
Yakima Valley Anti Constipation Fruit Paste
1 lb pitted prunes
4 ozs senna tea leaves (at health foods store)
1 lb raisins
1 lb figs
1 cup lemon juice
1. Prepare tea; use about 2 1/2 cups boiled water, add to tea leaves and steep for 5 minutes.
2. Strain tea and remove tea leaves.
3. Place 2 cups of tea, or amount left, in large pot.
4. Add all of the fruit to the tea.
5. Boil fruit and tea for 15 – 20 minutes, until soft.
6. Remove from heat and add lemon juice. Allow to cool.
7. Use hand mixer/blender or food processor to turn fruit and tea mix into a paste.
8. Place in glass jars or Tupperware and place in freezer (paste will not freeze but will keep forever in freezer also very long in fridge).
DOSAGE: 1 – 2 Tablespoons per day
I go to Jefferson also. I’m also on Mexiletine. I’ve probably been on it a bit over 7 months now. I know the one side effect they keep asking me about is tremors, but I don’t have that yet. From what I have read, although this is an effective medication for those with refractory migraines, eventually the sides effects will get to a point where you will no longer want to take this medication. I should say, at high enough doses.
I’ve recently upped my dose by 150 mg, and the first bad side effect that I have noticed is really terrible heart burn. I’m taking previcid, zantac, and tums.
Also, this drug took a long time to even start to work for me. I was on it for the first 6 months and it did nothing. Then one day it just kicked in.
Good luck with this med. I know it’s been a miracle for me.
I know this is an old post. Any luck with the Mexilitene? I received an Rx for this but did not fill it because I had such side effects with IV lidocaine. I’m so afraid to try it but I’ve been having such awful
I was just discharged from Jefferson on Mexiletine after a 5day stay admission for their lidocaine infusion. For the first time in 23 years I do not have a headache!!!!! What I do have is blurry vision and terrible jitteriness, that actually making it difficult to type this. I am going to stay the course for a bit and hope I adjust. I don’t have much to lose at this point. I’ll keep you posted
Thanks for sharing that information. i am so afraid to take it because of the reaction that I had to all the meds while there. I’m so Sensitive to meds. At this point what have I got to lose. I woke last night at 3:30 am with the worst tension headache after having an all day migraine yesterday and taking relpax, compazine, advil. Saturday I had to take the toradol IM which helped but the headache returned Monday. So today I am a zombie and needed to take a muscle relaxant because the muscles were so tight behind my neck and going down my spinal column. I am so tired of this. So many different types of migraines. One triggers the other. I’m tired and confused. Stuck in the house with these awful migraines ….
Please keep us posted on the mexilitene.
Did you do a hospital stay with a Lidocaine Infusion? After 2 doses, I left a message with the doctor’s office because I felt so awful and I was supposed to increase from twice a day to three times a day. I decided to hold the next dose and I haven’t heard back from anyone so it’s now 2 doses. I woke up today and still felt horrible, but from what I understand, it does have a pretty long half life. The vm at the doc’s office said they would can within 24 hours and we are fast approaching that. I have been taking Benadryl to try to counteract the side effects. It’s also worth stating a developed a DVT while there, so I have to be careful with any other meds I take because I’m now on a blood thinner. It was so awful that I plan to hold the med until I hear back. I was given Benadryl and Compazine in the hospital with the Lidocaine to counteract the side effects, because I actually had one eye that wouldn’t open while on the Lidocaine. I can honestly say I would rather have a migraine than feel like this. Yes! I mean that!!
Sorry to hear you are having a rough time with the mexilitene. Hopefully it will get out your system soon. Rest, drink water and give it time.
Yes, I was inpatient and did not do well with the cocktail of lido and other drugs. I did not get Benadryl because it gives me bad restless legs.
I was hoping you were doing ok with mexilitene as I am considering taking it. I never went in it when I got out of the hospital because I wound up in the ER the next day for 2 days. The drugs were too much for me. My legs would not hold me up. I couldn’t walk and was so weak. It started the second day of lidocaine. I even started hallucinating and they lowered the dose for a bit. My headache was better by I was a zombie.
So here I am, in the same predicament as before. I might try mexilitene so I have something g to report back to the dr. I haven’t even gone for my follow up. The headache have been really bad. I’ve started also getting awful tension migraines that wake me out of sleep. Muscle relaxants help along all the sling meds and strategies.
Still trying to figure it out as I am sure you are. Hang in there. You will get over this reaction and then start to formulate a new plan.
Please let me know how you are.
I am so sorry that you are having such terrible migraines! Now, knock on wood, I am still Headache free. You don’t seem to be having the hyperactivity that I am, so I would give the med a shot. That’s way I’m not taking it. I think there is is still too much Lidocaine in my system….it has that longer half life. According to my pharmacist I’ve got about another 24 hours (hopefully). you aren’t going to be getting the same massive dose that you were receiving in the hospital, it may even have to build back up in your system! But I would go for it! Good Luck! Keep me posted
It sounds like you are feeling better from the side effects. That’s great! Also no headaches…even better. Sounds like the hospital stay was pretty successful. If you can’t take mexilitene will you be on a preventive?
What type of migraines did you have?
Not feeling better from the side effects yet…..finally got a call back from Jefferson after 2 days and they said I should have been sent home with Ativan and apologized profusely, but have yet to call it in. Getting a little tired of their “after apologies”. I had one sided vestibular migraines and cluster migraines, also called suicide migraines. Have had them for 23 years. How about you?
Sorry you are still not feeling better. I know how awful it is. I’m not understanding why they said they should have sent you home with Ativan. Was that for the side effects from the mexilitene? Funny but when I first went there 2 years ago they said I had to get off the Ativan to be admitted inpatient and eventually get off completely. I Chose not to be admitted at that time. This time when I was admitted I told him that I was weaning off of Ativan and the doctor doing the rounds said that was not a problem. Actually,I hardly took my Ativan while I was there. I did not have a very good experience with the meds they gave me. One night was especially bad as I was in such abdominal pain from not moving my bowels because of all the meds! I had to beg for an X-ray because it felt like an obstruction. The nurses didn’t know what to do for me. I actually called the ER from my room and that’s how finally got some attention and a doctor came up to see me and ordered an X-ray. The pain continued until
The next morning …so like 11 hours of torture until a rounding dr ordered an enema! Oh well….
Why did they say they wanted you to tkae Ativan?
I also get awful right sided vestibular migraines. I also have chronic hemicrania continua and chronic daily headache along with tension headaches. Lately, the tension headaches have been the worst I’ve ever had! I know how you feel. I’ve had migraines from childhood….45 years! They’ve gotten worse over the past 10 years adding in the vestibular part about 5 years ago. I have still not been able to get on a good preventive. I’m very sensitive to meds.
I had a bad night NOT sleeping last night and then the tension headache set in. I took a muscle relaxant on an empty stomach at 2 am which did me in. I am like a zombie today. I hope the side effects start to subside. Hang in there. You will get through this.
OMG! You called the ER from your room?? That’s terrible! Yeah, I was unimpressed with the nursing care I received. I told 2 nurses that something was wrong with my arm and they both brushed me off until I demanded to see a doctor who immediately knew something was wrong and sent me for a STAT ultrasound where they discovered the DVT. They were giving me Ativan in the hospital along with my regular Xanax. But they ended up calling in Cogentin for me today and I’m feeling much better, but I let them know how unhappy I was that it took 2 days for someone to get back to me. I wonder if we were there at the same time….you posted just two days before I did. What was your reason for not wanting to take the Mexelitine in the first place? Do you have seizures with your migraines?
I went in on 5/15/18. I think they gave me Congentin while I was there. I was on so much stuff that it was hard for me to keep track. A lot of it is still a blur. I remember the psychologist coming in to see me and I found it hard to have a conversation with her. I was very affected by the lidocaine. After I wound up in the ER because I couldn’t walk, I decided that I wasn’t taking mexilitene because it might do the same thing the lidocaine did. It’s supposed to be the oral form of lidocaine and I was still feeling the effects a week after Methodist hospital discharge. They also gave me neck,shoulder and occipital trigger point injections with lidocaine upon discharge so that added to the lidocaine already in my body. I have held off on filling out the patient satisfaction survey as I was so upset with how I was treated when I had that emergency. I figured I would let a little time pass before I filled it out. Thinking back it was so funny. I actually called the ER from my cell phone and asked where the ER was and if I could come in for abdominal pain. They said yes and asked where was I located. I told them the second floor! They were pretty shocked and said I couldn’t come in and should call my nurse. I told them they weren’t helping me so she asked me what room number I was in and proceeded to call the nurses station. Before I knew it nurses and doctors came in and sent me down for X-ray!!
Thinking back it was pretty hilarious.
I don’t do well with so many meds that I sit and think about taking a new med for a long while! That’s why I am afraid to try mexilitene.
The migraines have really disrupted my life. Sometimes I would even have to take a short steroid course as a rescue. I’ve been keeping away from steroids because I had an issue with tapering a few months ago so now trying to deal with them as best as I can.
Have you considered CGRP?i have to learn more about it