A few months ago at the age of 24 I was diagnosed with Primary EM. I first started taking aspirin, but got no relief. My doctor then put me on a sodium channel blocker (blood pressure medicine), and after a few weeks still noticed no relief.
My next visit, the doctor game me Venlafaxine 37.5mg twice a day. I started taking it and I immediately felt nauseous and dizzy. I felt this way for about 4 days- every time I took the medicine. BUT I noticed my feet started feeling better. At the beginning of my EM, I couldn't go anywhere above 70 degrees, but after taking the Venlafaxine I was walking around sunny San Diego. I have been on the medication for two weeks now with NO problems. I put on closed toed shoes for the first time in months with zero pain. I event went to the gym and started sweating. NO pain. I also went and got my a pedicure today. The relief has been amazing. I feel extremely blessed, hopeful, and thankful for this relief.
I know treatment works differently with everyone, but if you have Primary EM, I highly recommend talking to your doctor about Venlafaxine aka Effexor. The medication is an SNRI. I don't completely understand how it is working. It is used as an antidepressent. I have linked some resources below. I wanted to share this experience as a sign of hope, and witness testimony to what has worked for some people. During the worst of my days, I would repeat the word H.O.P.E - but this was my acronym for "Hold On. Pain Ends" Now, I am hopeful that more research will be done to understand EM, and hopefully end this pain for so many others. I am also hoping this is more than just a temporary relief. Has venlafaxine worked for anyone else?
I recall there have been quite a few successes with Venlafaxine/Effexor. If you want to read back then try putting it in the search box at the top right of your screen.
I recall there have been quite a few successes with Venlafaxine/Effexor. If you want to read back then try putting it in the search box at the top right of your screen.
Dear Little K,
Thank you so much for the information. I go to see my doctor on Tuesday and plan on asking him about Venlafaxine to try, and hopefully I will have the same results as you. : )
Have a blessed day,
Grammy
Praying for good news. Keep us all updated on your results!
Best,
Little K
Grammy said:
Dear Little K, Thank you so much for the information. I go to see my doctor on Tuesday and plan on asking him about Venlafaxine to try, and hopefully I will have the same results as you. : ) Have a blessed day, Grammy
Thank you, Thank you, Thank you! Dearest Little K, for taking the time to write about Venlafaxine.
I had severe facial EM which effects my eyes, ears, neck and the inside of my nose for the past nine years. Then last year it started effecting my feet and hands. I was miserable!
But thanks to Venlafaxine, I do not get the pins, stinging and swelling in my feet and hands and I am seeing some improvement in my face. The big test was las week when I was going to watch my two little granddaughters, so excited but yet dreading it at the same time, and it went better than expected! I have been on Venlafaxine for ten days and I am hoping that it will improve even more after being on it for a longer period of time. YEAH!
Thank you again!
Be blessed!
Grammy
The only side effect was for two days I was nauseated after taking the medication. Also, it does help with reducing the anxiety that comes with this disease. I take Venlafaxine ER, which is a time release. I have tried a lot of different medications, which always made things worst, but Venlafaxine is helping a little more every day! YEAH!!! If you try it I hope you have great results!
Your message made every day of discomfort worth it. I prayed to the Lord, "why God? Why out of all people did you choose me to have EM" ... After a few months, I started taking Venlafaxine and I asked the Lord, "Why Lord? Why does this medicine help me- and yet so many others are still in pain? Why?"
I debated writing about venlafaxine, because I feared that people would ask "why does this medicine help her, and not me?" But after praying, and talking to my wonderful friends they encouraged me to share my blessing.
My heart is filled with joy to know that God put me in contact with you- and that you were able to get some relief after a long 9 years.
I also experienced a bit of nausea when I started the medicine, but it went away after a few days. I started off with 37.5mg of Venlafaxine 2x a day. My doctor just upped my dose to 75mg to see if there would be more improvement. It has only been a few days-but I am hoping to stay on the lowest does possible until it is necessary to take more.
Thank you for sharing your good news! I will continue praying for you and so many others!
Little K
~Life's biggest struggles are often times the biggest blessings~
Grammy said:
Thank you, Thank you, Thank you! Dearest Little K, for taking the time to write about Venlafaxine. I had severe facial EM which effects my eyes, ears, neck and the inside of my nose for the past nine years. Then last year it started effecting my feet and hands. I was miserable! But thanks to Venlafaxine, I do not get the pins, stinging and swelling in my feet and hands and I am seeing some improvement in my face. The big test was las week when I was going to watch my two little granddaughters, so excited but yet dreading it at the same time, and it went better than expected! I have been on Venlafaxine for ten days and I am hoping that it will improve even more after being on it for a longer period of time. YEAH! Thank you again! Be blessed! Grammy
THANK YOU so much for sharing your story. Our stories are so similar. I’m actually sitting in my neurologists office as we speak and it looks like we are going to give this a try! I’ve tried so many other medications and nothing has seemed to really make much of a difference. I have been so forunate up to this point in that I’ve not had any health problems, had to take medication, etc. I love to work out and be outdoors, but have had to make some adjustments along the way. You my dear have inspired me! Know that God is working through you. His will is not what happens to you but what you do with what happens to you. Please be encouraged, you are helping others! Would love to hear about your progress and I will do the same. Keep on keeping on!
I am so glad you have been able to talk to your neurologist and I pray that the venlafaxine works well for you. I am now taking 75mg twice a day and I am doing beyond well. No stinging pain and no burning. I am also able to be in temperatures up to 85 degrees. I am very conscious of my feet- more than the average person. So I do notice them getting hotter when I am outside. I try to avoid being outside on really hot days. But on cooler days, like 70 degrees I am able to wear closed toed shoes! My feet still have a redish color to them- but that is fine with me without the pain.
Thank you for the kind words. Comments like yours remind me to keep thanking God and living according to his will. Keep me updated on how the venlafaxine works for you. I am sure you have seen in this chain that you might feel nauseous the first few days- but it gets better.I will continue to keep you in my prayers bootcamper! Don't forget to keep me updated on your progress.
Little K
Bootcamper said:
Little K,
THANK YOU so much for sharing your story. Our stories are so similar. I'm actually sitting in my neurologists office as we speak and it looks like we are going to give this a try! I've tried so many other medications and nothing has seemed to really make much of a difference. I have been so forunate up to this point in that I've not had any health problems, had to take medication, etc. I love to work out and be outdoors, but have had to make some adjustments along the way. You my dear have inspired me! Know that God is working through you. His will is not what happens to you but what you do with what happens to you. Please be encouraged, you are helping others! Would love to hear about your progress and I will do the same. Keep on keeping on!
Im in the process of tapering off of cyproheptadine and the Mexiletine before starting the Veblafaxine. My doc and I decided it would be good to clean the other out of my system first. So, I’ll get to start the Venlafaxine in about 2 weeks. I will definitely keep you posted on the progress. Thanks again for the encouragement!
I believe I have been on Venlafaxine for two months now. My progress is still going very well. I have had 3 flares since starting the medication.All three times, I upped my dose of Venlafaxine. I am now at 150mg, and I am about to up my dose again. I know at some point I will have to stop upping my dose- but I am enjoying every minute that I can walk out in the sun.
Also, remember that the first 3 days, you might have headaches and feel nauseas from taking the medication. I have not had any of those symptoms since those first three days. Hang in there!
I look forward to hearing about your progress. I hope that you find some relief with the medication. Keep me updated!
:)
Kindly,
Kristie
Bootcamper said:
Little K,
Just checking on you. How are your flares? I will start the Venlafaxine in another week or so. Hope you are still getting some relief.
I'm so happy for you! I cannot imagine only three flares in two months, sounds pretty heavily! :)
My doctor just emailed me and said she'd go ahead and let me start tonight. I appreciate the heads up on the headache and nausea. I agree with you in that it's worth pushing through the side effects. Quick question: How long did it take before you started seeing the results? I know all of our situations are different, but always good to know. Will keep you posted on my progress. Thanks for all he encouragement. You have been a gift!
Bootcamper
Little K said:
Good Afternoon Bootcamper,
I believe I have been on Venlafaxine for two months now. My progress is still going very well. I have had 3 flares since starting the medication.All three times, I upped my dose of Venlafaxine. I am now at 150mg, and I am about to up my dose again. I know at some point I will have to stop upping my dose- but I am enjoying every minute that I can walk out in the sun.
Also, remember that the first 3 days, you might have headaches and feel nauseas from taking the medication. I have not had any of those symptoms since those first three days. Hang in there!
I look forward to hearing about your progress. I hope that you find some relief with the medication. Keep me updated!
:)
Kindly,
Kristie
Bootcamper said:
Little K,
Just checking on you. How are your flares? I will start the Venlafaxine in another week or so. Hope you are still getting some relief.