I've been using Dr Cohen's page as a guide to trying out approaches to pain management. I had tried SSRIs in the past, but they actually increased my burning. I'd never tried an SNRI, so per Dr Cohen's suggestion I began taking Effexor, starting with a very small dose and increasing by small doses once a week.
At 100 mgs I began to experience a reduction in overall skin hypersensitivity and burning. I continued to increase and found that my maximum effective dosage is currently 150 mgs. I've maintained at that level for 3 months now, and not only has it reduced my use of other prescription drugs, it has also lifted my 20-year depression, an amazing bonus I wasn't expecting.
I have had many good spells and bad spells for 25 years, so I was reluctant to credit the Effexor with the pain reduction until I was certain this wasn't just another dip in the pain wave. I got my proof last week when I forgot to take my pill in the morning. By late afternoon I was in a sorry state; by midnight I was near hysterical. And suddenly I realized I hadn't taken the Effexor. I took one immediately, and by about 3 a.m. began to get some relief.
That convinced me it's worth sharing my experience for those who haven't given Effexor a thorough trial. I know we're all different and there might be dozens of underlying conditions we're dealing with, but this might be worth a try.
BTW, I had genetic testing done, and I don't have the variant SCN9A gene. So mine is secondary EM.
Wonderful to see you in the forum. I was wondering how you were doing.
Were you diagnosed with secondary EM? Not having the inherited variant gene doesnt mean your EM is not classed as primary; you may have primary sporadic non familial . Its confusing - right. If secondary, have they told you what it is secondary to e.g. myeloproliferative condition or immune disorders like lupus etc...?
Effexor is now a popular first line therapy in the management of EM. Many EM'ers have reported similar positive responses and I know quite a few of our community members take Effexor. Many antidepressants are used - amytriptiline is another popular one- as they combine analgesia with mood stabilising effects.
I am thrilled that you are getting some relief - that is such uplifting news. Thank you for sharing this with us :-)
God bless
mads
For interest I attach links to other posts on the topic of antidepressants being used in EM management
I am so thrilled Anne ! I am glad you found something that has helped so much. I know what you mean by not knowing for sure because you symptoms fluctuate on their own or if it is the meds. It is perfect you forgot to take your pill that night!
Thank you so much for taking the time to share this with us.
Thank you for the observation, mads; no, I haven’t been actually dx’d with secondary EM. That was an assumption and could lead me in the wrong direction. No one has attempted to investigate so I’m still guessing.
I will be seeing Dr Jorrizzo next month, and maybe he’ll be interested in looking into that. At any rate, I’ll post on how that appointment goes and if he seems to be knowledgeable on EM.
Pleased to hear you are going to see Jorizzo. We have heard heard so many good reports about this specialist. Can we reiterate about the importance of preparation with that arsenal of information we go on about(sorry to keep stressing it ). Photos, research, pain diary..... Ok enough said ;).
Please let us know how your appointment goes. If you would like to chat with someone who has seen Jorizzo just let us know
This is such great news , Anne. Sounds like you are really moving forward now!
Tizzy, thanks for the warning about the blood pressure and glaucoma issues. I will keep an eye on those things. That depression began about five years into the EM, so I always thought it was situational. And situational depression has to be dealt with on more of a cognitive level, so I have been vigilant about my mental habits. I guess at some point it crossed over from situational to body chemistry, and I just didn’t realize it until the Effexor lifted it!
Mads, I read the previous discussions on Effexor with interest! Thanks for including the URLs.