I am reading Dr. Cohen's articles again and again and wonder whether anybody has tried using
5 HTP to find out about their Serotonin levels and whether it would increase or decrease EM flares.
According to Dr. C., if it reduces your flares you could go on taking 5 HTP. If not you have a better idea of what medication may help rather than make things worse. Sounds to me that would be a good way to start if one has just been diagnosed with EM.
Please let me hear from you about your experiences.
I just read Dr. Cohen's articles the other day for the first time as I begin learning about EM. I'm going to visit my Rheum'y tomorrow to discuss EM (as she thinks I have it), along with the recent diagnosis for Raynaud's too. I planned on bringing it up to her -- I'll let you know what I find out.
I asked Dr Bennett at the Radcliffe hospital about it, and he said he had never heard of it!! I would also be glad to hear if anyone has experience of this
Ajh, I don't know whether Dr. Bennett is your physician but it would have been nice if he would have added to say that he would try and help by looking into this aspect of Serotonin and EM and maybe explain what it really means to your. After all Dr. Cohen does have first hand experience , so I am sure there is a connection that may push us in the right direction of what meds., food, herbs may help - since we are all different in our reaction when it comes to EM. The article I am talking about is in medicationsense.com , Supplements and Herbs in the treatment of erythromelalgia. Whenever I find a doctor (don't have one yet) I'll sure ask him/her.
Thanks for posting this. I somehow totally missed Dr Cohens article! I’ve got it printed out for myself and will bring in to my pain clinic appointment with my EM docs. Doesn’t look like I’d benefit from it since Effexor and a few other drugs he mentioned did not work for me in the past. But heck, ill ask again!
Be well everyone (and keep those ice packs handy!)
Pesto
With all this talk about serotonin and EM, I'm now curious about the connection...
I was on antidepressants (so many - one after another) throughout my teens. I developed EM a few years later. I am wondering if any of you had taken antidepressants prior to developing EM. Does anyone know if there has been research into a connection (not in treating with SSRIs, but in SSRIs preceding EM onset)? Just a thought. If whacked serotonin levels may be related to EM, then mightn't long-term use of SSRIs be a possible cause?
Personally, I have not tried taking antidepressants to treat the EM because of the horrible experiences I had with those drugs in the past (and because my EM is relatively mild so far). I am glad that some of you have found relief with them.
Hi Domina!
I have read all litterature Doc. Cohen has written and found a wealth of useful information.
I have tried 5HTP and found it helpful but got migraines from it, so, instead I was told to try an equivalent called skullcap in natural products, it is most helpful specially at night as at night as it helps tremendously for sleep and has little or no side effects… Skullcap is available over the counter in natural food products stores in Canada, not sure about other countries…
Hope this helps! Good luck
thanks so much for that info. I am sure I'll look into it. I have just one more question - did you try 5HTP and then Skullcap on your own or were you already under a docs supervision? I am asking because I haven't found a doctor yet .
I wrote about the 5HTP serotonin test a few weeks back. That and other things im trying will be somewhere in my posts. By doing that test found out that i was not serotonin antag. It was making things worse. I also do lots of toxin tests with BP measures. Helps to know what to avoid RE: everything. I think its another 'tool' to use in the poly-pharmacy approach to this refractory disease. Please PM me if you would like to chat( that goes for everyone).
I agree with you.EM very much a trial/error. Very personal and terribly refractory. We need a polypharmacy approach. All things are worth trying/trialing/testing to see if they ease symptoms. I call it a 'tool kit' lol!
Personally i believe sodium channel blockers could be way forward. I have some research if interested.
GHod bless
mads x
LibbyK said:
With all this talk about serotonin and EM, I'm now curious about the connection...
I was on antidepressants (so many - one after another) throughout my teens. I developed EM a few years later. I am wondering if any of you had taken antidepressants prior to developing EM. Does anyone know if there has been research into a connection (not in treating with SSRIs, but in SSRIs preceding EM onset)? Just a thought. If whacked serotonin levels may be related to EM, then mightn't long-term use of SSRIs be a possible cause?
Personally, I have not tried taking antidepressants to treat the EM because of the horrible experiences I had with those drugs in the past (and because my EM is relatively mild so far). I am glad that some of you have found relief with them.
Hi Domina
To answer your question, yes ai did try 5 HTP on my own after reading up on Dr. Cohen’s notes, I then switched to skullcap on a recommendation from my osteopath…that being said I am under medical supervision having found a neurologist who knows little ir nothing about EM but is willing to try and help. I must say however that just when I think I have found the winning combination and I start to feel better…EM sometimes just comes back with a vengence…very tough to figure out…
Hope this helped
Good luck
Thank you so much Dominique. I still don't have a doc but I know I have to do something real soon - things are getting worse - to the point where relief of some sort and even if just temporary is needed.
I will start my trial and error with doctors after the weekend. Wish me luck.
Hope you'll find the winning combination real soon.
Dear Domina. I know how you feel - we all do. This is a wicked wicked disease. As i said in previous post please try to read Dr Cohen, join TEA association and if you like i can send you some research articles on medication trials. Over the past year i have tried/trialed/tested EVERYTHING. From reading other posts/my own research things include:
aspirin therapy
magnesium (tablets, Epsom salts baths or spray)
antihistamines ie loradatine
serotonin antag (anti depressants)
sodium channel blockers- ie lidocaine
Neuropathic meds like gabapentin(lyrica)
Anti inflammatory meds ie Naproxen, Ibuprofen
Antianxiety meds- ie diazempan, citalopram
Wearing cotton clothing, sandals
Cold water/ice packs(dont recommend ice as can cause nerve damage
and sores/ulcers),
Cold air fans
Chill pillow
Omega 3
VitD/calcuim
Thyroid check - might be out
Toxins - look at diet. allergies.
However EM is really trial/error. Its a very clever refractory disease. As Dominque says you think you may have it sussed and it hits back with vengence.
Thank you mads - I have finally found a neurologist - will see him next week for the first time. I am just still debated whether I should try the 5HTP test on my own before seeing him or wait to see what he has to say. I don't even know yet whether he is familiar with EM.
Yes- thats biggest hurdle finding someone who actually recognises it and familiar with it as a disease. 5HTP only needs 48 hrs. You start feeling worse or flare pretty quick. I took one dose and bang! Domina please take photos of your flares, pain diary, list of symptoms and TEA stuff and any research you can to neurologist. We usually have to educate them lol! Getting diagnosed is a massive problem for many of us.
Good luck with neurologist - we will all be thinking of you
Hi mads, I'll take a few articles that Dr. Cohen has written, my list of what happened and when and since I have flares 24/7 he can see them. If he doesn't believe me or gives me a lot of static then I'll just go find somebody else. But I think I am going to be lucky - I read his reviews and all of his patients said the same thing - they love him because he really listens and has time for them. To find that in a doctor is important but I think it is an absolute MUST when dealing with EM.The other thing is something *funny* - my real name is INA and his name is OspINA- that has to be a good omen.
