I’ll let you know how it goes! How long was it till you see improvements ? It said about four weeks in your book or so, right ?
Carine and Noelia maybe better if you switched to personal messages? Just thinking most of the recent things have been just between you and others will be getting email notifications as I choose to do and for that reason it would be better.
Sorry I didn’t realize! Will do ! Thanks Sheltie
That’s fine I didn’t know if you knew about private messages. Thanks
Actually most of us probably wanted to learn from that conversation.
I will explain why I took this decision later, but I am sure if anybody wanted to follow this a request from you or anybody else to be included in the private messages would have been granted.
Monkey, Don´t worry i´ll let you know my progress with carine´s protocol. So far haven´t seen much improvement but i´m not going to throw the towel just yet, maybe i´ll take longer for me, since we´re all different and our EM is different too! Hope you´re doing well
Seenie from Moderator Support here. I just noticed this interesting thread, and thought that it fits better in the Complementary Therapies section.
Sheltielife makes a good point about notifications. Sometimes we end up on threads that we are no longer interested in. Sooo… from the “did you know” department:
_ You can modify the notifications that you get for a thread by scrolling all the way to the bottom of the page, where on the left you will see a blue dot. Clicking on the blue dot will give you notification options for that thread._*
Just another one of our ultra-cool features on Discourse! And cool is what you people here need, right?
You are right Seenie it would fit in with the Complementary Therapies section didn’t think of that.
I have also noted that glutamate ‘GSM’ affects me a lot. And ketamin target is glutamate receptors. So maybe it is a thing to consider.
Affects you in a positive or negative way ? I’ve heard of ketamine infusions to treat chronic pain in RSD/CRPS! Apparently it has something to do with resetting the central nervous system! I won’t to try the ketamine gel but my doctor is, for now, unwilling to prescribe !
In a positive way, on a cream form.
Quick update for my moms rare conditions. Just bullet points,
We tried ketamine and amitriptyline cream with mixed success. I found out that there is a chance in my moms case that amitriptyline caused or could be causing side effects. In my mom case this is just a theory. And it’s because she has a rare case of EM perhaps a rare version among rare versions.
And she seemed to at least we are certain as patients to get her EM from Risperdol. And Risperdol affects 7 5-HT or Serotonin receptors that control blood flow and body temperature. A rare side effect or Risperdol is your body could lose control of its temperature. Well we got that in spades. amitriptyline Will effect six of the seven same 5-HT receptor sites much like Risperdol.
Mom had three supposedly bad side effects she reported from the cream when we tried it with effective doses on her feet. She had a kind of fast rapid heart beat which she said made her afraid. She had more shacking in her feet perhaps when the ketamine wa ps wearing off. She had blurry vision and she had mood side effects.
All of those can be prevented supposedly by the amitriptyline, and amitriptyline may help some EM folks by reducing their pain even without the ketamine,
I found amitriptyline may have side effects that are like the ones my mom has and it matches the antagonistic activity of Risperdol as well. So I’m fearful that it may be creating side effects. I voiced this concern to the neurologist and mentioned we might want to try the ketamine without the amitriptyline in the mixture. He wrote a script for ketamine cream 1/2 percent without the amitriptyline.
We got it. A home health care foot doctor came by today and looked at moms feet, I showed him the cream. This foot doctor was willing to take the risk to write the original ketamine cream mix we tried. The neurologists wrote three times a day on the prescription.
Doctors who said we should not try unconventional therapies and were against ketamine cream when seeing the results and my reports said you should try it again.
You have to document the positive results and print out the studies and show them to the doctors. In my moms case opiod drugs only bring her feet done from a constant 10 level flare to a seven level pain and she gets ten level flares when active, unless her feet are chilled and almost frozen. So mom is a difficult case and maybe you have to wait before the doctors will try an unconventional therapy.
Moms had her first trial of the cream today, the first application of 1/2 percent ketamine. About 1/6 of a teaspoon per foot. Spread thinly all over her feet and on the ankles where the tibial and other nerve are located that feed nerve signals or sense signals from the foot.
11:30am application of the cream by her foot doctor. She kept her feet out of the water chilling immersion for seven hours and her feet remained red, but we’re cool for the most part without pain. She slept and took less opiod pills, missed a half dose, she takes her pills in half doses every eight hours. So she delayed a dose, because she wasn’t in pain and was sleeping,
No bad side effects. She took another dose of pills late Aron d 7:3@pm or so and she started to sleep soundly. Her feet were in the cool water and were chilled and became purple. She complained about pain and I said you may have chilled your feet a bit to much and she took them out of the water bath and put them in a foot stool.
Will report more later, we will see how the pure ketamine cream tests work.
Thanks for the update, but i don´t think this is related to this topic. Maybe we can add a new topic about the pure ketamine cream, some people that may be interested could be missing out. Hope you and your mom are having a good week.
By the day, i think it´s great what you are doing for your mom. I too was once my mom´s caregiver and i know how challenging and exhausting it can be.
I agree much that it was helpful there was a lot to read and not really appropriate to the discussion.
Well after about a month, i can say that the heat desensitization protocol has not work on me. I wish there was someone else to give their imput in the subject.