Has anyone has any success with the serotonin reuptake treatment option?. As you know i am trialing sodium channel blockers SCB and seeing subtle changes . As the 2 treatment lines are compatible I have decided to guinea pig the SNRI therapy line. Going to test my response to serotonin first with 5HTP- see medicationsense - Dr Cohen.
If that does not produce a negative response ie massive flare within 24 -48hrs, will start to take an antidepressant ie: start Venlafaxine(Effexor) at 75 mg day increasing up to 375 mg day. Could be that this will help different symptoms to the SCBlockers.
Be interesting to hear your experiences or views.
As always contact me for research guys
Can i just add please can we all keep sharing and moving forward - helping each other. Research is there to be shared and knowledge imparted. All you need to do is add link or update file. We need all the ammunition we can get in order to get diagnosed and treated
Thank you Madds. You are so right! We need to share all we can to help each other! Even this odd but effective suggestion… Has any one else discovered the cooling effect of a metal air freshener or other aerosol can? I find it helps my hands immensely when I hold on to one with my hands when going to sleep. It is so cold! I can thank my loving supportive husband for that one! Take care,
Alina
Is nobody on an anti depressant treatment? Has anyone even been offered an anti depressant therapy for EM? Thats interesting if answer is no- as quite a lot of research stating it might help/plus Dr Cohens medicationsense work.
Noted that quite a few articles are advocating a polypharmacy approach to EM symptom management. Again, might makes sense- different medications for different symptoms. Have added below a word attachment on antidepressants from Dermatology institute USA.. Contact me for polypharmacy stuff if interested.
I find it interesting that antidepressants are a treatment for this - I was on them throughout my teens, and then developed EM symptoms in my mid-twenties. I hope they help you, but please be aware that sometimes antidepressants can actually mess you up mentally - they can make a previously happy person suicidal, so be on the lookout for unusual thoughts and feelings if/when you take them. Good luck!
And Alina - that is a great lifehack-style strategy your fella suggested!
I have tried a couple with good repo she but found the side effects too difficult, although it helped my em somewhat I need up either not being able to sleep or sleeping constantly as well as other side effects. My heart sank when I read that you’ve been offered venlaflaxine because that was the last medication I tried, I would get severe withdrawals if even a couple of hours late in taking it. This finally ended when I became I’ll, missed a whole day then got something called discontinuation syndrome. I was unable to move my eyes or head without bad vertigo that made me vomit. Spent a week unable to get out of bed, 4 weeks with horrendous moods swings, switching from manic laughing, in controllable sadness, rage etc. I literally got every side effect of discontinuation syndrome over a month period in which time I couldn’t go out in public, I even had to get my 19 yr old daughter to move in with bf parents because I was awful to be around. I thought I’d started a discussion on this. I am very sorry that my view on tho particular med is so negative and I understand thT we all react differently but I had come off other seratonin meds with ease. I will look to see if I can find old discussion. Please research venlaflaxine and discontinuation syndrome and take it strictly under drs orders. Take care
I had a horrible time with discontinuation of Zoloft (sertraline) in particular. I became so full of rage that I was inclined to punch every stranger who came within 5 feet of me - luckily I was able to keep myself from acting on those impulses. I'm not an angry or jealous person naturally, and withdrawing from sertraline made me exactly those things - to the extreme. It was truly terrifying. I'm lucky I didn't end up in jail because of how bad that drug messed me up! That lasted around a month I think, during which I also completely lost my appetite. When I was on the drug, I was a total emotional zombie - it erased all of the happy along with the sad. I'll never touch an antidepressant again no matter what it may do for EM symptoms. That said, they wouldn't be out there if they didn't work for some people.
lauraflora1 said:
I have tried a couple with good repo she but found the side effects too difficult, although it helped my em somewhat I need up either not being able to sleep or sleeping constantly as well as other side effects. My heart sank when I read that you've been offered venlaflaxine because that was the last medication I tried, I would get severe withdrawals if even a couple of hours late in taking it. This finally ended when I became I'll, missed a whole day then got something called discontinuation syndrome. I was unable to move my eyes or head without bad vertigo that made me vomit. Spent a week unable to get out of bed, 4 weeks with horrendous moods swings, switching from manic laughing, in controllable sadness, rage etc. I literally got every side effect of discontinuation syndrome over a month period in which time I couldn't go out in public, I even had to get my 19 yr old daughter to move in with bf parents because I was awful to be around. I thought I'd started a discussion on this. I am very sorry that my view on tho particular med is so negative and I understand thT we all react differently but I had come off other seratonin meds with ease. I will look to see if I can find old discussion. Please research venlaflaxine and discontinuation syndrome and take it strictly under drs orders. Take care
Great feedback - this is exactly what we need- the positive and negatives so we can make an informed decision and take some kind of control - have some say in our medication regime. I think its so important that we feel as much 'in 'control' as possible. Laura - i agree that discontinuation syndrome or rebound syndrome is awful ,and can occur with many antidepressants - thats why tritation up ,and also down when coming off the med is imperative.. Ive been on venlafaxine in the past and luckily tolerated it well but thats no certainty I will do so again. Again to reiterate EM is not a one size fits all in terms of treatment or therapy.I would prefer not to add an antidepressant to my regime but any side effect would be the lesser of all evils for me.
Saying that i am testing 5HTP- first (Tryptophan) a natural serotonin booster rather than an antidepressant med. Taken 5HTP now for week and no nasty side effects... infact I do think its helping me sleep - blessing in itself(makes sense as melatonin implicated). Interestingly - process of researching-- tryptophan is an amino acid and amongst other things such as mood, cognitive functioning, cravings , has been implicated in pain tolerance. Eating foods rich in tryptophan like turkey, walnuts, and tomatoes will help naturally boost 5-HTP. Wanted to just reiterate Laura's words- antidepressants must always be prescribed by a Dr and taken under their instruction. I always OK things with my Dr and Pain specialist just in case.
I have been on effexor 50 mg 2x a day (started with 25mg/day about 4 months ago).I would say it makes me somewhat “neutris a disasterl” for lack of a better word. It has made a notable difference in my EM but information! ust be increased every month or so (stops working).I also take topomax 25mg 2x a day which I am sure boosts the effect. I also am on propranolol 60 mg 2x a day initially fo blood pressure but we increased it when it was noted it was helping the EM.
It throughly amazes me how very different we all are in what helps us with our disorder. Always hope for the best…what Is a disaster for one sufferer can be a salvation for another. I love being able to share Information!
I take amitriptyline 10 mg morning and night. Although not an SSRI it is a TCA antidepressant and is known to help with nerve pain. I have tried to come off it in the past but the flareups increased. Other than dry mouth I have no side effects. I also take Lyrica and mexiletine orally twice a day and get lidocaine infusions every 6 weeks. I have the option of taking medical marijuana when I am really suffering. I am in Canada and am on disability so it is all covered thank goodness.
Hi Mads
I did try 5HTP as suggested by Doctor Cohen but found it gave me terrible headaches, had to discontinue use immediately, I have, however, been taking Effexor for nearly 2 years with little side effect (other than unfortunate weight gain:(
I do however keep my dosage to a minimum, 50 to 75 mg before bedtime, helps a little with the EM but significantly for sleep, also on 300mg Gabapentin which I’m not sure helps much but flares seem to worsen when I try to stop, coincidence? I have found, through Doctor Cohen’s studies that Magnesium is effective in controlling the swelling, had to stop taking it at the beginning of the year because of stomach flu and then realized the increased swelling…
Hope this helps and hope you recognize the names of medication as I live in Canada and drugs may sell under different names…