Can someone please recommend some things to help. I need sleep and my hands and feet are on fire!!! I will try anything!
This has a good outline of the major treatments to try
Other possible “out of the box” treatments that are not mentioned in there are - low dose naltrexone, CBD oil.
FWIW at my first visit with my derm (well, the first derm who “got it” … ) he wrote in his medical notes - “we recommend a combination of mexiletine, doxepin, gabapentin, pregabalin, Cymbalta, and baclofen; there is no standard “most effective combination,” and it often takes several months to determine the most appropriate regimen for each individual patient due to the diverse mechanisms and symptoms of this disorder.”
(The doxepin was suggested specifically for me instead of amitriptyline because it is generally the most sedating of the tricyclic antidepressants, and sleep was a problem for me then.)
He recommended treating the neuroloptic component first via trial and error of the above oral agents and possibly topical analgesics (though he was not enthusiastic about the topical analgesics) and then trial and error via vasoactive agents… but he made a point that he wanted to interrupt the neural pain networks first.
Just in case that helps. You haven’t tried a lot yet from what I can tell, and hope you can work with your doctor to start going through some of the EM drugs to find a regimen that improves your sleep and quality of life. Be tenacious about updating your doctor too - I feel bad sorta about how often I contact all my doctors lol (just an inherent people pleaser…) but I believe it has gotten me better + expedited treatment in the end.
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Hi ,
Have a look at my posts concerning Low Dose Naltrexone. Remember there will be something to help you manage this . This forum is excellent.
I know they say applying ice directly on skin is dangerous, I rub ice on it. It’s the only thing that works for me so far.
For the past couple of years I have been researching and testing out cannabis and I’ve found that certain strains of Indica, either in edible form or used with a vaporizer, have, well, saved me regarding my nighttime horror flare situation. I flare all the time, but nights are so bad for me. I’m in CA so it’s all legal here and it’s incredible how regulation has helped bring about so much information about all the individual kinds of weed. In my experience, the qualities of each strain (you can go to leafly.com and find hundreds with all the breakdowns of their characteristics and effects) really are what they say they are. I only go for the most sedating kind, which always also have pain relief effects, because I use it at bedtime. I’m someone who wouldn’t touch marijuana for 15 years b/c of the paranoia and just uncomfortableness I experienced; and hell no, I wouldn’t touch an edible after one horrifying experience with a cookie a million years ago. But now, we’re just not even at all in the same world as that picture of cannabis. For me, it’s medicine. I was using the Cannabutter by Heavenly Sweet before I started using the flower. I’d do a 1/4-1/2 tsp and it was so helpful with pain relief and sleep. Legalization made that more complicated (CA is crazy) so that’s when I tried vaporizing the Mendo Breath. I do buy the top shelf strains (Mendo Breath and Gorilla Glue are my favorites; the dispensary I love doesn’t always have Mendo so I just now got the GG and they seem so much the same, so I know there’s tons of options for Indica) and I have a nice vaporizer (it’s the Arizer Solo II and it’s for flower, just my preference); I don’t need that much of a dose and I’m not hung over in the morning. I sleep hard. And I flare so much still but I sleep. Day time, well, for me, I’m finally off all the meds, after years of relentless side effects, and I just do what I can to stay cool. Impossible to avoid flares and my life is completely changed b/c of EM, but I just adapt day-to-day. At least now, not using any pills (the anti-seizure meds were so bad for me, but took years and different kinds/doses for me to understand what was happening to me) so my brain is clear and I feel like I’m gonna make it to the next day and while it’s really a weird life in a weird body, it’s still a livable one…
Its so interesting. I just started a medication that includes naltrexone (Contrave), come to find out it might help with my EM which has gotten pretty unbearable since I moved to Texas.
**Dear Moxi J,
I take 1 &1/2 to 2 mg Alprazolem at 11pm, which knocks me out in about 30 minutes. **
When I’m on fire, I just try to read to get my mind off the burning. and constantly check the clock. If this didn’t work, I’d have to move to Colorado or Maine to legally get MJ.
I literally have a bottom shelf in my freezer FULL of various makes and sizes of gel packs that I’ve tried. Most of them lose their cold in an hour BUT the very BEST gel pack that I’ve found is 8 hour CryoMax cold pack. It’s absolutely amazing. I put a couple of 6x6” packs in my purse for an evening wedding last month. I just couldn’t miss it! CryoMax also makes a 12”x12” that I roll up in a soft dish towel and hold while watching evening tv when I have to. Available on Amazon.
Bless you, Moxi J, I hope this info helps.
Patricia aka Satochan