Erythromelagia
 

Hello everyone,

Have been diagnosed -at last - with rare disorder erythromelagia (EM) - now widespread throughout body - including scalp, ears. This disorder has totally disabled me -my flares are near on continuous at present. Specialist starting me on IV lidocaine urgently as nothing else in terms of medication ie pregaba, naproxen, venlafaxine etc. has helped . Has anyone had this treatment? Also shout out to Mrs D for any info/advice she could give me please.

Am following Dr Cohen - taking high dose mag, omega, VitD etc... Also aspirin theory 350 day to facilitate vasodilation . Toxin free diet. cold/icepacks etc... Specialist wants me to continue with all of this.

Thank you

God bless

I wonder if you read all of Dr. Cohen? He is using a specific
serotonin drug that is only available in Canada (and maybe in UK).

He mentions it on his website, and I forgot the name. But it is an antihistamine similar to cyproheptadine but better for his
erythromelagia. If you go back to his site you will find it.

The fact that the venlafaxine works, makes me wonder if Dr. Cohen's drug (which he imports to US for himself) would work better for you?

Dear Mrs D , thank u for such a quick reply .
Yes i its sandomigran (pizotifen), an antihistamine and anti-serotonin drug (from Canada). In Uk i need this prescribed - also cyproheptadine (Periactin) is only prescription- they wont just give me it as they think they know best. As it was i had to shove TEA and Dr Cohen under their noses and stick to my guns with pain diary, photos etc. Specialist said im the 3rd person he has ever seen with EM.
Venlafaxine does not work for me - never has .

I have found that the only antihistamine that seems to help a little is loratadine(closely related to tricyclic antidepressants i understand). I can get that Ok but im playing with doses- not too sure how much i should take 'safetly' . In terms of serotonin antagonists - triptans they will give me ritzatriptan for migraines - might that help????????????
I follow Dr Cohens every word - but as he says some things work for some not others. I would welcome your opinion re IV lidocaine ?
I dont know what to do Mrs D. Im frightened, im very sick and totally disabled with this. Ive been passed from specialist to specialist for long time. Ive been guinea piggying myself with all sorts. Aspirin seems to help a little and magnesuim but thats it . All tests 'normal' except insufficiency vitamin D.

Again , thank you so much for your help.
God bless
mads