Hi my name here is Tilly. I’ve been to many different departments in our local hospital. Rheumatologist, dermatologists and finally heamotologist.
All have moved me on to different departments saying that there speciality is not EM.
My doctor sent me as she is unsure about my medication I suffer badly with migraines. I take sumatriptan in tablet form but also injections.
My EM is hands feet and starting on back of my legs. My doctor is concerned that my medication is making my EM worse.
Can anyone give me some input as the medical professionals can’t, everyone stateing how rare EM is.
Hi Tilly,
I really hope you can find a doc eventually that will learn about your case. Being tossed around like a hot potato amongst docs … yeah i know that experience too well, it’s so frustrating … but keep at it.
My migraines were in peak form when I started burning like crazy. I do take imitrex myself to prevent migraine and it is mostly effective if I am able to take it on time. How often do you take imitrex? My understanding is that if someone takes it too often, it will lose effect over time due to its agonist mechanism of action (?)
When I take it for migraine, it often helps the burning/EM as well. However, I can experience burning rebound (mostly face) from it sometimes, maybe since it is a potent cerebral vasoconstrictor?
Have you tried other migraine drugs? There are those new anti-CGRP meds that recently came out on the US market (i’m very interested in them …)… or botox? Also i believe mexiletine can work as a migraine drug (not first line) as well as being used for EM. Jay Cohen has also written about magnesium, feverfew, butterbur and other migraine-esque things in the context of EM.
I don’t know if any of that is helpful. But Hang in there.
ps - I think pain management might be the docs to likely have most experience with EM and migraine both? not sure
Huge thank you for your reply, I honestly don’t understand some things that you are saying, but it is very useful to show my doctor.
My worst case would be my sumatriptan taken off me. I so couldn’t go back to day after day of that pain and vomiting till I’m so dehydrated I need hospital.
I read an article awhile ago, linking migraine to EM, I have spoke to another suffer on this web site and she isn’t a sufferer of migraine I’m pleased to say for her.
Once again thank you for your response and for understanding what it feels like to be bounced from one section of a hospital to another. Just nice to know people understand.
Hi Tilly,
I have been using Sumatriptan as my migraine rescue medication for 20 years. My EM started approximately 10 years ago. Personally, I have not seen any correlation between taking Sumatriptan and my EM/EM flares.
Would be curious to know if you have found a correlation between the two in yourself.
Hi fellow migraine sufferers…
I’ve just seen your posts.
My migraines returned after a 15 year absence! Go figure! Sumatriptan had been a lifesaver for me many years ago. I never had the rebound migraines from overuse but was wary of that.
Good news for a treatment to try that I’ve found works very effectively.
GINGER.
Yes you read it correctly first time. Ginger.
I’m not sure of any links between EM and migraine, will look into that. Any links to research?
I came across a randomised double blind controlled trial comparing sumatriptan vs ginger (encapsulated). The pain relief from ginger was equivalent without the side effects. I tried it and was staggered… relief within 5-10 minutes. Pain free. Just as fast as sumatriptan. The dose was either 1/8 or 1/4 teaspoon of ginger powder but I didn’t find that very palatable so I cut some very thin slices of fresh ginger root and slowly chewed them, one after the other. 3-4. Intense but nice if you like ginger (I do).
So give it a go and let me know how you find it. I’m recommending it to all my migraine patients now.
Here is the summary:
PS Carter may like to tag this thread with the words “migraine” & “ginger”
Best!