I didn't know if there was a special place on the site where this information is posted or if I should just search through old posts.
If anyone wants to share on this thread - what do you take and how effective is it in terms of providing relief.
Thanks!
Jordy
Hi Jordy. Hope you are having a good day. I know we've all discussed w each other what meds we take or have taken but good idea to try to put it into one place. Do you mind if I ask what you take or have tried?
I take gabapentin and doxepin which have helped tremendously. We had to juggle the dosage with each for awhile, but now I think the level of relief from symptoms is what will be maintained until something changes. I still have pain in my feet and scalp, but it's 80% better than it was before treatment, and at a level I can live with. I've been on these meds for about 2 years, so I can say without a doubt that they're helping!
For me none of the medications worked- the doctors reported that I had fluid in my abdomen because I was having inflammatory reactions in my guts. What I have found is that strictly controlling my diet - I no longer eat gluten dairy eggs or refined sugar, alcohol and certain dyes because I found that they were triggers . I would also recommend having your doctor check your vitamin levels - this disease puts re body under a tremendous amount of stress and certain vitamins and minerals might be lacking in your body which may lead to triggers . Last year I was wheelchair bound and now I can do 30 to 45 min of walking with only mild symptoms. This may not work for everyone and if the meds work then good on ya but I would recommend trying this as well.
Tizzy, how interesting that you mentioned weight control being connected to Doxepin. I have been trying to reduce my weight (even just a few pounds) for quite awhile without much success. It never occurred to me that it might be connected to one of the Rx I'm taking. I'll discuss it with my MD next time I go for a med check. Maybe she will be willing to switch me to Effexor to see how that works for me. I wonder if it will be more or less effective on the EM symptoms. Wouldn't it be great if it were MORE effective, plus lets me shave off some weight! We'll see. ~Marie
Tizzy said:
Good to hear - I think an antidepressant with an anti epileptic is the way to go. As I mentioned in my bit about Treatment of EM in discussion not all antidepressants are the same - Doxepin is one of the older types but is great for Seratonin levels, good for anxiety and sleeping . Effexor is one of the newer types an is similar in effect, but for me less trouble with weight.Cymbalta has 50 times more affinity for Norpinepherine than seatonin and its affects are quite different- for me cause circulatory side effects and flares. Now that I am on treatment things are better,sometimes I get flares but they are not painful. All are a bit difficult to start,Tizzy
For me none of the medications worked- the doctors reported that I had fluid in my abdomen because I was having inflammatory reactions in my guts. What I have found is that strictly controlling my diet - I no longer eat gluten dairy eggs or refined sugar, alcohol and certain dyes because I found that they were triggers . I would also recommend having your doctor check your vitamin levels - this disease puts re body under a tremendous amount of stress and certain vitamins and minerals might be lacking in your body which may lead to triggers . Last year I was wheelchair bound and now I can do 30 to 45 min of walking with only mild symptoms. This may not work for everyone and if the meds work then good on ya but I would recommend trying this as well.
Emcar1989- I am also on a strict diet avoiding gluten, sugar , dairy and alcohol . I saw a naturopath who used iridology to diagnose that I had a fungal infection that was causing my EM. He put me on various herbal supplements and suggested the strict diet. I also take Gabapentin and Amytriptlin . My flaring and pain has decreased dramatically to the point that some days I am virtually pain free. I am not cured , I still can’t tolerate overly warm conditions but my life is so much better! 8 months ago I purchased a wheel chair as walking was very painful due to constant flares and swelling but now I am able to walk distances quite comfortably. My Naturopath has treated other patients with EM and he said that everyone has different triggers that set off their EM. I also use a slow press juicer every morning , juicing mainly green veg and 2 fruits.
hi Jordy
There's a good discussion thread called 'sodium channel blockers' on this website which I have found very enlightening. Good luck
ajh