Yes that is correct Joe. Many of the sideeffects are seen when the ketamine is measurable in the blood stream and often that is not the case with ketamine when it’s being put on as a cream.
The amitriptyline has been used by some perhaps along with other medications as well to be added meaning they took it perhaps in oral form and it either helped or had no effect or made it worse. Sometimes with EM when we look at the seemingly true raw stats of what people report about 1/3 will respond positively or negatively and another 1/3 will have no response to any single treatment. In theory according to medical literature from neurologists for example if the cause is not known the treatment may be very different for different rare diseases. So as different people may have different manifestations and causes or unknown causes there is no one solution that solves all the EM problems.
Ketamine can seemingly be applied topically with less side effects but it was reported as more effective for some em patients in at least one test group when it was strong enough to reach the blood stream.
Amitriptyline as a help or cure for EM I should really say just something to help it alone would actually be a different topic. Not to split hairs but it would be working on someone em symptoms in Peoria oh a much different way and I believe it is not being used in the cream mixture of ketamine and amitriptyline as a pain killer at all. It’s being used to reduce psychiatric reactions one might have from the ketamine because ketamine can give a person a high or a bad trip.
Ketamine likely won’t give bad side effects as a cream for most doses according to the study it said it would be a very reduced risk. To a normal person however a doctor would say be careful and don’t apply it on someone and touch it, because you don’t want to get it. Some doctors may be very wary of ketamine and say don’t touch the cream at all if your applying it to a patient.
I think there are two different kinds of EM generally. This is my own 5eory of course and there are probably many kinds of it as it can be related to many kinds of neuropathy or mixed neuropathy prob,EOS and there are a hundred kinds of neuropathy in theory everyone in the world could potentially have a different mixed version of poly-neuropathy and no two might be exactly alike.
For me and this is my layman theory as a casual observer there are those who get EM but have mixed symptoms with other nerve problems or something else which causes flares but also may cause a time when flares are not present and feet or hands may even be naturally cold. Those kinds of EM patients have an EM flare but also other problems and the EM flare may even be temporary. An example of an EM flare which may be temporary would be an EM flare that a diabetic would have. They may have EM flares as nerves are dying from lack of blood as capillaries are filled with sugar residual or sticky plaques to put it in layman’s terms. As they lose nerves the nerves die and their body will react and flares may happen. But over time their small fiber nerve death causes the foot to go completely numb. They will eventually still have flares and swelling because the body default response to not knowing if something is going on wrong like no nerve feedback is to send more blood to heal the injury. So they will have swollen and horrible looking feet but they won’t feel it because the feet are numb as the nerves died.
Then there are those with mixed ailment problems they may have neuropathy and Reynards syndrome. They will get em flares perhaps but also have cold chilled feet and hands. Their disease may cycle and the EM component may be a mystery to them.
I think people with mixed symptoms often benefit from aspirin tramedol therapy. They may respond well to those therapies.
Then we have some who have EM flares and only EM flares. They never have cold feet normally. Or feel that their feet are normal. They may actually have normal foot and skin temperatures if you measure it but they feel like the foot is burning and swelling may result as the body tries to send more blood down there. They may not have any circulation problems and blood flow and heart issues are not a problem. They just have a kind of pure form of hot flare o key EM. In theory according to doctors if heat is added to the foot for burning foot flares will happen and pain will be worse. And the only thing to remove the flares is environmental chilling of the feet.
The medicine helps you feel a pain reduction but only environmental chilling will help. But in some cases perhaps people are push8ng their em around with other medications that trigger Reynards like symptoms. The people with pure EM or only hot EM flares and no mixed symptoms will not respond to aspirin or trmedol. This of course is only my theory and guesswork. I don’t know that I have enough data to verify this and it’s only a guess.
I have another theory at least for my mom’s version of EM but I don’t know if it’s really proper or even a good one and that is the sensitivity of the scale of her temps are out of sync with the reality because many nerves have been damaged and the brain is making up signals that aren’t there and rescaling the network. Kind of like losing say 90 percent of the resister leads in a volume control. The brain may remap the few remaining nerve impulses that are received and only a few say one may act like ten signals being fired off. But the other nine nerves are gone. If the brain is guessi)g and remapping it would be like a broken knob or volume control on an old radio that goes from level 1 volume abruptly up to level ten with hardly any volumes in between.
If the EM patient brain is making up signals and remapping the signals lost then a small brush against one nerve might trigger a kind of small fiber neuropathy overreaction like ten nerves we struck.
This of course is just a theory but it may be why my mom often says her pain is level seven or level ten. She doesn’t say other levels are being felt because her pain volume knob is broken to use a broken radio analogy. How can one help someone with dead or permanently damaged nerves?
Some think nerves can be rebuilt and fixed maybe giving them high doses of cynbalts will help may be the guess of one neurologist willing to give it a try. Others may suggest neurontin. It becomes a kind of trial and error guesswork thing.
In theory the neurologist can figure out and find out the best way to treat nerve damage but it doesn’t always work out.
I think some maybe a very few maybe less than 1 percent may get em from pills like amitriptyline or Risperdol. This because of 5ht receptor damage. But this may not be the problem most em patients face.
A path many tasks is aspirin trmedol.
Then opioids, maybe Effexor, amitriptyline, neurontin, lyrica which is neurontin once it’s processed but has more dosage levels and finally other therapies like ketamine when all others have failed.
Ketamine orally is for more severe cases of pain for people like cops type 2 or what used to be called RSD. They may used or try ketamine therapy which is very dangerous and experimental in an attempt to do a ketamine coma reset of their brain.
We are not talking about taking ketamine orally for EM. People who get ketamine in other ways either got it for operations in Vietnam during the war or for other diseases which gives more severe side effects because it’s hitting the brain harder being in the bloodstream.
We don’t want to go there that’s for sure.
It’s also important to note than compounding pharmacists can work for companies and be of a mind to try more and experiment more. They may add all kinds of mixtures to a compound. Many medical doctors will be very wary of doing that. They may take a conservative approach.
So my summary is to be careful and watch out for side effects. I’m. It saying you should not try to find out and suggest new things to try to the doctors but remember some medications can have very severe side effect and make the EM even worse.
As one neurologist said to me. We have to be careful of this medication referring to mom’s opiods, “because one of the side effects is death.”
There are literally millions of people with burning feet flares which may be just temporary or due to diabetic diseases. I think many of the marketed stuff pushed toward them like nerve renew stuff won’t likely help a person with just EM flares. A lot of stuff is unknown and some of my thoughts indeed many of them are just my opinions so people have to discuss this with their doctors and likely go through a long slow process to figure out what best works for them.
I’ve also not mentions mexiletine which helps some who havethe genetic form of em. That often requires a lack of opiods and is given in heart cardiac doses to work with EM but may be given in much smaller doses for neuropathy which won’t help most em patients. The higher doses of that heart medication have to be monotored often in a hospital setting and the patient may have to be off all opiods to take that drug. That is also a path some with the genetic version of EM end up on.
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