As two of the worst things I've tried for my EM were citalopram and duloxetine, I was wondering whether drugs that antagonise serotonin would be a better option. Has anyone had any success with drugs like cyproheptadine or methysergide? (I saw the latter mentioned on the EM leaflet published by the Raynaud's society, although it sounds like a seriously unpleasant drug).
http://medicationsense.com/articles/2012/emtreatment.html
this page has a lot of info on that, and i want to try the first two you mentioned. i could imagine that the other drugs could help you if the first two did not. good luck!
Great question and I'm looking forward to the replies
ajh
Hello everyone,
Try Cohens 5HTP serotonin test.
I amazingly found being pumped full of serotonin was not helping my EM - im a non antagonist. Think we are all different so its trial and error.
Cyproheptadine - this is an antihistamine too. Have you tried LORATADINE. I couldnt get hold of the cyproheptadine in UK. High dosage LORATADINE seems to ease pricking during flare(albeit slightly).
God Bless
mads x
My flares have been greatly reduced in length, frequency, and severity by taking 50mg of sertraline (Zoloft), which is a selective serotonin reuptake inhibitor (SSRI), daily. But it doesn't work for everyone. Trial and error.
My intensity, frequency and pain have been hugely reduced by several medications. The first that was a huge help was Loratadine (Claritin), I noticed improvement within the first half hour and knew I was onto something. I continue to take it daily morning and night. I also take Hydroxyzine (25mg) at bedtime, another antihistamine. About six months ago I added Citalopram (10 mg) and seem to be more improved still. I am taking this because I became severely depressed and needed help, we were not prescribing this for the EM specifically but I do think I am improved since taking it. I know that you said you were worse so as you can see it really is trail and error because everyone is so different. I cannot take or do anything that causes vasodilation.
I have decreased the Gabapentin and Nortriptyline that I take down to one pill a day (taken at night). I think I could quit this completely but because I am not exactly sure how these medications all work together I am afraid of upsetting the applecart if you know what I mean. Some day when I'm feeling braver I may stop med's one at a time to see what is working and what is not, however, I am not willing to risk it yet. I also take a baby aspirin morning and night and have just recently started taking magnesium. Again I feel like there is some improvement with flaring since starting it. I take Doctor's Best High Absorption 100% Chelated, Fully Reacted/Not buffered and am taking one pill four times a day.
Thank you all for sharing, it's through sites like this that I have found so much help. I hope this might contain a little morsel of information that might help someone else.
My son has recently started a regimen of Cymbalta 60mg daily with a noticeable difference in pain tolerance. I actually suggested to our doctor about the Cymbalta because of the success others had experienced here on this forum. (Thanks for sharing!) He too is on antihistamines (Zyrtec) for allergies but that did not seem to have an effect one way or the other. Gabapentin and Elavil were miserable drugs for him. This is trial and error. So sorry that most of the time it is error.
Answering your question about the serotonin antagonist, have you tried the other SNRI’s (Effexor and Pristiq)? Given the chemical action of these drugs and what they are meant to do, I would try those before ruling out an entire class of drugs all together, especially one that has proven success with so many others with EM. Just a thought before antagonizing another thought…no pun intended! 
Phew! I am so glad you have got the right diagnosis but what a horrible experience you have been through to get there. I am so sorry it has taken so long and it is really a salutary lesson to all of us to insist we have got the right diagnosis. You set off an interesting discussion and it has stimulated really useful informative exchange. I hope the new treatments have a decisive effect and I'm so really glad you stayed the course, going through some really dark times. Thank you
with love
ajh
elizabeth said:
I have finally managed to get the correct diagnosis for my 'EM' which turns out to be Mast Cell Activation syndrome, diagnosed by immunologist. The symptoms of this can be identical to EM, causing flushing/intense neural pain in feet, face and other areas, triggered by heat, pressure and posture as hyperactive mast cells pour neuroirritants and vasoactive substances into the blood stream. For those experiencing relief with antihistamines, you may want to look into this as a possible cause of EM. Drugs that elevate levels of norepinephrine and serotonin (almost all SSRIs, SNRIs and tricyclics) stimulate degranulation of mast cells, as do most painkillers (all opiates, NSAIDS). This explains why, in my case, every single medication given for supposed 'EM' made my problem significantly worse.
I did try cyproheptadine (which can be bought online in the UK from the US), it was no more effective than other OTC anti-histamines, of which I'm now on a very high dose, as well as the mast cell stabiliser, oral sodium cromoglycate. I had a urinary test for serotonin (for suspected carcinoid), my levels were actually at the low end of the range. I think my experience does illustrate the need for correct diagnosis with these problems, rather than just making assumptions on the basis of symptoms alone and medication by 'trial and error'.
Serotonin seems to have funny effect on me: more warmth but less pain. Pizotifen is a good serotonin antagonist, recommended by Cohen- people get it usually for migraines but your GP might let you try it - mine did. Doesn’t seem to make a big difference in my case.
FrancesE
Elizabeth. would you mind giving me the name of your immunologist? I am getting nowhere finding someone who knows about all this, so I haven't yet embarked on trialling the well known options and I am years down the line. I did visit Dr Bennett at the John Radcliffe but he only deals with primary EM. He recommended Prof Chris Denton at the Royal Free and I wonder if anyone had any experience with him. Does anyone have a recommendation for a dermatologist preferably Herts Bucks Oxon or in London. Is there one in the Royal Free?
elizabeth said:
I have finally managed to get the correct diagnosis for my 'EM' which turns out to be Mast Cell Activation syndrome, diagnosed by immunologist. The symptoms of this can be identical to EM, causing redness,swelling and intense burning pain in feet, face and other areas, also triggered by heat, pressure and posture. Hyperactive mast cells then pour neuroirritants such as substance P and CGRP as wella s vasoactive substances into the blood stream. For those who have mentioned experiencing some relief with antihistamines, you may want to look into this as a possible cause of EM (though I can't say that I noticed any, they only affect the very recent flare urticaria itching and do nothing for the flushing/swelling and associated burning). Drugs that elevate levels of norepinephrine and serotonin (almost all SSRIs, SNRIs and tricyclics) stimulate degranulation of mast cells, as do most painkillers (all opiates, NSAIDS). This explains why, in my case, every single medication given for supposed 'EM' made my problem significantly worse.
I did try cyproheptadine (which can be bought online in the UK from the US), it was no more effective than other OTC anti-histamines, of which I'm now on a very high dose, as well as the mast cell stabiliser, oral sodium cromoglycate. I had a urinary test for serotonin (for suspected carcinoid), my levels were actually at the low end of the range. I think my experience does illustrate the need for correct diagnosis with these problems, rather than just making assumptions on the basis of symptoms alone and medication by 'trial and error'.