Hi satochan
No I have not read them sounds good Ron and I love living in Canada we have been here for 36 years from England all our family is still there . I am seeing doc on Tuesday will ask him for cream and going to try Effexor will post on weather it is helping . Have you read about Dr Cohen I the U.S. He had EM and has written a lot about it he was bed ridden for a long time and managed to get him self better so that he could work and do most of the things he liked .
Let’s keep our heads up and cool .
Hi Flame, His was the very first reading I did on EM. Tried the magnesium but it didn’t work for me. Was saddened to hear of his passing. To tell you the truth, I don’t know that the compounded lidocaine cream really helps me all that much, but it does for some of us.i think it’s just been wishful thinking on my part. We all just respond so differently. Hope you’ve had a flame free day.
Flame said:
Hi satochan
No I have not read them sounds good Ron and I love living in Canada we have been here for 36 years from England all our family is still there . I am seeing doc on Tuesday will ask him for cream and going to try Effexor will post on weather it is helping . Have you read about Dr Cohen I the U.S. He had EM and has written a lot about it he was bed ridden for a long time and managed to get him self better so that he could work and do most of the things he liked .
Let’s keep our heads up and cool .
I am also taking Lyrica, which has offered some relief - not all mind you, but some. I was previously taking gabapentin at the max dose, with little relief and switched directly to Lyrica at a dose of 300 mg twice daily. It is important to titrate up to an effective dosage with Lyrica (and gabapentin) - if not, you will experience the “drunk” feeling another poster described for a bit while your body gets accustomed to the dosage.
Hi Flame, Am feeling bummed out. Woke up on fire. The flares don’t usually come until afternoon. Am taking Lyrica. 3X a day. The other day a friend asked was the Lyrica helping and when I thought about it, I didn’t know. I’m still burning, but who knows how much worse it would be if I weren’t on it. I had a lidocaine IV a couple of months ago and it’s the only treatment that has really helped. I’m scheduled for another on the 10th. I can’t wait! My EM guru Mads, says she also takes something called Mexilitine to extend the numbing effects of the IV. I hope you’re having a good life. It’s hard for us EMers. Have a cool day.
Hi satochan
Hope all is well . The weather here has been so hot summer is not usually this bad stay home a lot . What are taking now ?. I have started on venlaxafine 75mg I believe it has helped a little with pain I am also taking just 25 mg more of lyrica .
I do have numb toes though does not feel good .
I am going to take more venlaxafine soon see what happens
Let me know how you are doing . Take care
Wow! That was fast. I’m taking 37.5 mg of Lyrica 7am, 2pm, & 50mg ar bedtime. 50 makes me a little drunk, fog brain, slow reflexes etc. just called my EM dr to increase to 50mg 3x a day. I’m burning. I’m frustrated. But I’ve got stuff to do! I’m bummed. P
Hi satochan
Sorry you are not doing to well . What happened with IV
Lidocaine did it work for a bit ? The lyrica takes about 6 weeks to work so increasing the does will not happen right away . Have you tried venlaxafine ? Although I have been doing ok heat is still a big trigger . I tried to go out with my friends for supper stayed to long had a bad flare no nerve pain but I am still trying to get over it and some pain now .
So I know I can not stay out that long with out cooling my feet aww damm now I have to wait for it to settle may take a few days or weeks . Anyway keep those feet cool with cold packs take it easy . Let me know how you are doing
Take care hang in there you have support here
Oh I took mexillatine made me worse but you might have luck
A
Hi Flame, I’ve never heard of the Venlaxamine? Speld rong. I’ve heard of taking cymbalta with Lyrica. A friend asked me the other day if the Lyrica was helping. For the first time I realized it ISN’T!!! Have left a voice mail with my Drs office but they didn’t call back or call in a script for Lyrica 50 mg. am getting a lidocaine IV on Wednesday and can’t wait! Its really the only thing that’s really helped. I’m going to ask my Neuro for a script for Mexiletine which is supposed to prolong the effects of the lidocaine. Oh me. Tonight is “Inspector Lewis” night. I adored inspector Morse. Absolutely ADORED that character. His loneliness and love of classical music really got to me. I never missed an episode! Guess you can tell I’m an uber fan of British TV. Just had a Harry Potter weekend on TV. they showed every movie and I was in heaven. It’s been over 100 degrees here in TX so I get errands done very early in the morning. My flares usually start mid afternoon so I’m totally out of commission. I think that’s pretty common for all of us. Hope your cool today. Patricia
Hi satochan
I wish you well on Wednesday . 100 sounds way to hot although it has been hot here also . Ron my hubby used to watch inspector morse we are English moved to Canada 34 years ago . At least here we get cold winters the problem is when you go inside places have the heating on can not win .
Let me know how you do after wed take care
Anne
Whoops meant to say it has been hot here haha
I thought I could not edit the mistake so I wrote again then I found out how then could not delete the second reply oh well I had to laugh I have heard of people taking Cymbalta it has work for a few take care A
I’ve been thinking of you. Am reading the newest Inspecteur Gamache mystery. I love EVERY character in the book and am glad to be mentally back in Canada. I hope this note finds you weller (that drives spell-check crazy). Stay cool. Patricia aka Satochan
Hi
Hope you are feeling a little better did the last IV work and mexeilline ? It has been so hot here stayed at home most of the summer fall is coming yeah ! It is not usually this hot for so long even people who like heat are sick of it .stay cool and well Anne
Hi Flame, I hope your doing well and your cooler. Had my 2nd lidocaine IV last month. Oddly, it take a week or so to start seeing any improvement. Last week I had 5 normal person days. It was wonderful! Then the heat started again. I’ve made an appointment to get another next month. Also after that IV started taking Mexiletine to extend the mex effects. I’m increasing the Lyrica from 50mg 3x a day to 75mg and see what happens. Sure hope your doing well. You have all my best wishes. Patricia
Hi
Nice to hear from you and that you have had some good success . I tried mex and it made me worse so I am taking venlafaxine Effexsor is the brand name not doing to bad as long as I am cold . I have found what foods make me worse because when I eat them my body burns on a night . It is getting worse in my ears and face . Ron and I when to mont Tremblant in Quebec it’s a summer and sky resort so beautiful . I managed ok better than I though the weather was cooler there love it nice to get out of the house summer was bad here so hot . Keep me updated on how you are doing . Ron is retiring in less than 2 years we might move to newbrunswick east canada want to be beside the sea and it’s cooler
Keep in touch let me know how you are doing Anne
I used to get relief from Pethidine injections, at least 100mg. They didn’t stop working, it was simply a complete scumbag of a doctor who said I was a drug addict and stopped them. I think pethidine gets called Demerol in the US a lot, just as gabapentin gets called Neurontin. It’s also gets called meperidine.
How cool, your real name! Dear Anne, I’m so glad you got to get away for a little while. How very frustrating to have the damn thing affect your face. I’m in a burn right now. It’s funny, when I’m in a flare I come to the site to educate myself and not feel so alone. The burning has started going up my arms from my palms. I’m taking 50mg of lyrica 2X a day and 75mg at night. We’re increasing the doseage because I’m still burning. Next week I get my 3rd lidocaine IV. That has helped me most of all with Mexiletine oral 3x a day. I hope you’re making some headway with your flames. Keep cool. Patricia
Uh oh, I thought I was writing a private message. Sorry.
Hi! My Dr wrote me a script for oxycodone since I can’t take hydrocodone after 4pm as it has caffeine in it. Sorry to say, it didn’t lessen the burning at all. The HCD brings the burn down about 2 notches and the compounded lidocaine cream brings it down 1 notch. If the burning is still at a 3 or 4 I get a get pack out of the freezer which lasts about 10-15 minutes and it shear Heaven. If any one else has found an answer to pain control, please share. If things don’t improve, I won’t be able to spend Thanksgiving or Christmas with my family. Bummer. Patricia