Hi. I have suffered with EM for several years now, had many tests and tried many drug combinations. I have waited this long to post but it has been 6 months since I have had a full blown flare up. I still have some symptoms especially on hot days / nights but so much better than before. I am taking 50mg nortriptyline and 30mg duloxetine. I have suffered with side effects from the nortriptyline:fatigue, dry mouth, regular urination. The fatigue is what hits me most and disappointing as I am finally sleeping through the night and still tired. I have tried reducing the tablets to 40mg but not as effective. The lack of flare ups however still out weighs the fatigue. To help with the heat at night I also use a cool pillow to put my feet on which has some effect. I also changed my job to be less stressful and only work part time, I am also trying to practice mindfullne. I feel it is quite a lonely condition as I am up and awake when everyone else is fast asleep and unaware I am up for hours. On the surface you look okay, other than having ‘funny’ coloured feet and it is hard to explain how debilitating a condition it is. Have to say though that in the last few months feeling more control of the condition feels amazing.
I hope this may help others if you are trying out different drugs.
Joanne, thank you for posting and sharing your story with us. I hope you continue to feel as well as possible. Kindest, Jules
Thank you for sharing what's working for you, Joanne! Too often the "success" stories (even though with EM, that doesn't really mean cured) are under reported. Please keep us in the loop :)
Thanks Joanne - I haven't yet tried nortriptyline, but I have tried other tricyclic antidepressants of which there are : -
- amitriptyline (Endep)
- clomipramine (Anafranil, Placil)
- dothiepin (Dothep, Prothiaden)
- doxepin (Deptran, Sinequan)
- imipramine (Tofranil, Tolerade)
- nortriptyline (Allegron)
- trimipramine (Surmontil)
I have used the Endep - for depression some years ago but could not tollerate it, and stopped taking it.
I do not take anti depressants of any description because they either make me like a Zombie OR agitate me to the point of wanting to punch holes in the walls ..... So I don't go too god on them - BUT since I have had this EM for over 8 years I have not tried them for it and it may well be time to re-visit them for help for my pain levels which can get excruciating at times ... I am willing to try anything to see if it will reduce my pain .... I will discuss this with my Doctor next visit.
Thank you for the Info ....
Take care -
frostbite (Greg)
COOMA NSW
Australia
Hi,
Thanks for posting this. Can you tell me how you take the doses? do you take them at night or are they divided up morning and night? I am about to try antidepressants and any information you can share about your pattern of dosing would be appreciated especially since you are having some good results despite some bad side effects.
Sending healing thoughts!
Jordy
Please remember in any discussions about dosages of medications these are what has been prescribed by a doctor for that individual. The same dose or dosing regime may not be appropriate for another person. Please use any information in this regard to guide and inform discussion with your doctor before making any changes to your own medication.
With regard to the use of tricyclic antidepressants for neuropathic pain, these are generally prescribed at significantly lower doses for this than for depression which also reduces the likelihood of 'out of it' type feelings and other side effects.
Hi
thank you for letting us know how you are. My target areas for EM started in my feet , legs, arms and hands, however it has now advanced to my mouth head and face,, but it is most pronounced in my mouth ,face and head in the late afternoon. I feel when it is about to start , my mouth , gum , tounge and eyes becomes almost as red as strawberries Ij anyone gets EM in their face , mouth eyes like I do it would be good to hear from them.
I recently had an extremely bad flare-up lasting over six months, I did not believe that there would be any reprieve as this was the longest period and the most intense I have ever had. It has slowed down although I still some discomfort it is bareable
I have no specific treatment , I have stop taking Nitrofurontoin a drug for Bladder problem as this can cause EM symptoms.
Wishing you all well if you find anything that helps please let us know.
Thank you for sharing the information and your experiences. I am a newbie here and I have yet to be diagnosed by a doctor. However, I am 98% certain that I am also suffering from EM. My primary doctor has no experience with EM and basically did not agree nor disagree but said I should see a foot specialist. I need to have a doctor diagnose my disorder correctly before I can try any medications of any kind. I am currently taking Gabapentin 300MG 3 times a day and it does help eliminate the extreme burning but it was prescribed by my spine specialist but not for EM. I have no idea how to proceed nor what type of physician I need to see. Can someone give me guidance?
hi Jordy. I take the duloxetine 30mg in the morning and the nortriptyline 50mg at night. I recently have tried reducing the nortriptyline and taking it in the morning to see if it helped the fatigue but I felt I was. Beginning more pre flare up signs so have gone back to night and 50mg. Hope this helps! Jo Jordy516 said:
Hi,
Thanks for posting this. Can you tell me how you take the doses? do you take them at night or are they divided up morning and night? I am about to try antidepressants and any information you can share about your pattern of dosing would be appreciated especially since you are having some good results despite some bad side effects.
Sending healing thoughts!
Jordy
Hi Juan. So sorry to hear about all your symptoms. I have the EM in my feet and do have some tingling sin my hands. I will keep you posted on how things go.
Juan said:
Hi
thank you for letting us know how you are. My target areas for EM started in my feet , legs, arms and hands, however it has now advanced to my mouth head and face, but it is most pronounced in my mouth ,face and head in the late afternoon. I feel when it is about to start , my mouth , gum , tounge and eyes becomes almost as red as strawberries Ij anyone gets EM in their face , mouth eyes like I do it would be good to hear from them.
I recently had an extremely bad flare-up lasting over six months, I did not believe that there would be any reprieve as this was the longest period and the most intense I have ever had. It has slowed down although I still some discomfort it is bareable
I have no specific treatment , I have stop taking Nitrofurontoin a drug for Bladder problem as this can cause EM symptoms.
Wishing you all well if you find anything that helps please let us know.