I have EM that I believe may have been caused by Levaquin a Fluoroquinolone. Like many of you it took years to diagnose. For the last 18 months I have been unable to stand. I am virtually bed-ridden. My feet cannot be in a dependent position. My wheelchair has leg supports that allow me to keep my legs extended. My feet are extremely swollen. They have been that way for the last couple of years. Over the past few days I have been having intense pain 24 hours per day. I used to get some breaks in the pain. I have taken/tried the usual drugs that are out there and that I could tolerate. Unfortunately due to allergic reactions or bad side effects some possible drugs were not viable. I am currently taking Gabapentin and Compounded Ketamine Cream. The Gabapentin is only marginally helpful but it knocks me out and makes me feel dopey. The Ketamine Cream works for about 10 minutes. I have been reading lately about Ketamine infusions and intra-nasal Ketamine for peripheral neuropathy. Has anyone tried this or known someone else who has? What’s your experience? How many treatments did you need? How frequently? Side effects?
I’m including a list of drugs that I have tried over the last couple of years or at least those I remember.
Hi Connie,
I’m so sorry for your suffering. We’ve all been there and continue to fight the good fight.
I have done about a dozen ketamine/lidocaine infusions. They lull you into a stupor. I was able to listen to some relaxation music. Forget about reading a book. You will be way too dopey. I gave up on these as the relief was extremely temporary (less than 24 hrs.) for a while, that short relief gave me some time to catch my breath and regain my strength. That was of some value to me.
My symptoms are not as bad as yours are. If I were in your position, I would give it a try. My mandate is that if it can do no harm, I’m willing to try it. At the very least, you will have the best snooze you’ve had in a while .
How is your sleep at night?
You may want to try more systemic options, since you’ve tried a long list of compounded creams without success. The underlying pathology of your EM may not be affected by a topical cream.
Hi. Have you seen the website floxiehope.com ? Then type in Peggy’s story in search.
Peggy used a combination of magnesium, calcium and Vitamin D to get good relief. It appeals to me particularly because of the natural method. All the best
Thanks so much for your reply. A couple of questions if you don’t mind. First how long does the infusion procedure last? Was it done in a hospital or a doctor’s office? Any side effects? They talk about hallucinations especially for older folks. Did this happen? I live in Manhattan. Do you know of anyone that does this in Manhattan? You asked about my sleep at night. I get flares in both feet about 8:00 PM and I keep applying cold compresses that provide little relief. I finally get to sleep about 2:30 - 3:00 AM. My biggest heartbreak is that I can’t stand or walk. I used to be a runner. I’m glad to hear that your symptoms are not so severe.
Thanks so much for your reply. I’ve tried several systemic drugs with no benefit. I’m now on Gabapentin which does a little but makes me very sleepy. I’ve got some other medical conditions as well as allergies which interfere with my trying a lot of meds. My doctor is not very interested in my case although she was the first to diagnose it. She is also very cautious re drugs. If I can get my pain reduced then I will be able to get out of my house via wheelchair and could try to find a new doctor. Do you know of anyone in Manhattan who has some familiarity with EM?
The infusions take a few hours. I had it done at a pain clinic here in Toronto. I’m sure Manhattan pain clinics must do the same. No lingering side effects. Just extreme fatigue for the same day. No hallucinations for me. I basically fell into a deep sleep. Couldn’t stay awake even when I tried to.
My flare ups also occur in the late afternoon and continue through the night. I have found ways to help me sleep:
Trazadone is a medication that my doctor prescribed. Helps me sleep and helps with the anxiety.
I soak my feet in a cold bath for about 5 mins. I then lay down and have two 4” fans blow air on my feet from about 2-3 feet away all night. I find that this works better than the cold compresses. I also keep a spray bottle beside my bed. When I wake up in pain, I spray my feet and get them back in front of the fans.
Please let me know if I can do anything else to help.
Regards,
Reid
Thanks for writing. I tried lidocaine patches and lidocaine/ketamine cream. The lidocaine did not seem to be effective although it may work as an infusion and it may work orally. Have you tried the oral lidocaine? What was the dose? What was the specialty of the doctor who prescribed it? My doctor didn’t want to prescribe mexilitine because it’s a heart medication and I have a mild heart condition (electrical bundling). In fact I asked her about the mexilitine. Because I have been homebound I haven’t been able to visit my cardiologist. It’s possible that he would give me the go-ahead re the mexilitine.
Thanks for your reply. I plan to read through floxiehope.com this afternoon. I have tried magnesium but can unfortunately tolerate only a small dose because I have acid reflux. My usual daily dose of D3 is 3000 IU. For the last 3 weeks I tried 6000 IU daily. I didn’t notice any improvement in fact I have gotten worse but I don’t know if that was from the D3. I get calcium from my ester-c tablets and milk.
While I don’t know of any doctors specifically in Manhattan (I live in the DC metro area), I can point you in the direction of The Erythromelalgia Association’s physician directory. It shows a number of doctors in Manhattan and the NY metro area. You might want to try calling some of them to gage their interest in new EM patients. Hopefully you will find one able to treat you.
Having read further down the thread, I take mexiletine (the oral analog of lidocaine). I had severe EM and mexiletine stopped all spontaneous flaring within 36 hours of the first dose. (Prior I was flaring in an almost perpetual cycle, multiple times a day, every few hours.) For some years after I could still elicit an EM flare with activity but that has dissipated. The arc of my disease course has been a very gradual withdraw of symptoms. I now have no limitations. My mexiletine dosage has reduced from 150mg 3 times daily to a single 150mg dose daily. I take no other medication for EM now. As someone who used to constantly apply ice packs for my EM, it is my opinion that doing so is detrimental. It simply encourages rebound flares. Finding a pharmaceutical that can provide enough relief to break that habit may be as important to recovery as the drug itself.
Hi. Acid reflux can usually be well controlled with omeprazole ( losec or generic copy of omeprazole) . This is generally very well tolerated with few interactions. Worth talking to your doctor about. It would be a shame if you could not try the regime in floxiehope because of acid reflux due to magnesium. If by chance you have a persistent cough this could be caused by acid reflux and would be another good reason to try omeprazole. All the best.
The Physician’s Directory on the TEA website was very helpful. I found two people a Cardiologist and a Dermatologist who are both familiar with EM. I plan to make an appointment with the Cardiologist to get clearance for using Mexiletine because I have a mild heart condition.
Many thanks for your help and I will let you know how I make out,
Thanks so much for your reply and the info on floxiehope.com. There can be some serious problems with omeprazole and probably all PPI’s. First there seems to be a very high correlation between PPI’s and dementia. Secondly, even though they shouldn’t be used more than 14 days in a row most people wind up using them continuously. They do work very well. However they prevent calcium from getting into the bone, not good for those with osteoporosis or osteopenia. It is also extremely difficult to stop using them. It can take months to be weaned off (I’ve had personal experience with this). You are right on the button with persistent cough being a sign of acid reflux. My husband had this symptom for his acid reflux. He was coughing for years before being diagnosed. Controls it with diet.
Nothing is simple and without risk. It’s hard when you have pain to tolerate any new pain.
Thanks for the getting back to me. It seems as though lidocaine and mexiletine are very similar. I’m going to check with a cardiologist to see if I can be a candidate for mexiletine. It seems that quite a few EM people have had success with that. I will try and get my Doc to give me some comparative info on oral lidocaine vs mexiletine. Pros/Cons… The more information I have the better chance of making a reasonable decision.
Thanks for all you help and information. I can’t find a reputable practitioner for Ketamine infusions. So I am exploring oral mexiletine because several folks have reported good results. Thanks also for your cooling regimen.
My mom had 6 treatments of Ketamine cream but she was on opiods at the same time. I’ve heard ketamine to be useful to people with CRPS type 2 which used to be called RSD. This is used to put them into a coma and almost kills them and they have a system like reset of their brain. However ketamine for EM I’ve never heard of it being used to EM in treatments other than cream for the feet. It’s often tried at lower doses. It will have an additive effect of opiods making them stronger. It may cause an OPIOD tolerance RESET. And in my mom’s case only 6 days treatment not even consecutive days caused her to have opiod tolerance reset and fewer opioids are needed for her for pain control and that has been since 2016, so we are going on 5 years of less need for pain meds thanks to ketamine. But she is less steady on her feet, so was it worth it? Hmm. . . hard to say. . .
Ketamine cream in the Mayo Clinic tests worked better when it was absorbed into the blood which may be one of the reasons they were trying it for you in other ways other than foot cream.
Ketamine is related to LSD and Angel Dust, so it’s not something to be taken lightly.
It has less psychotic effects if it’s a lower dose. There are two kinds of Ketamine left handed and right handed molecules and one is better for EM than the other. Often the ketamine in pharmacies is of a nolecular side (left or right handed) that is NOT known. If you ask you’re compound pharmicist which type of ketamine they have in their powder they won’t know what kind is is? IT could be left or right handed molecules of ketamine or may even be mixed with both types of molecules in the powder they get.
The drug makers don’t provide the pharmacist with the molecular structure information so they don’t know which condition it will best treat. Ketamine is mixed with other creams to reduce the side effects. It’s a hallucinogenic drug. I have a friend who was a vet and also was trained to be an MD and got his degree to be a doctor. He doesn’t practice medicine. He used ketamine on animals to knock them out and saw the effects on them when they came out and said he’d never use ketamine on humans period.
Ketamine .5% lowest does and 1% Amitriptyline was used on my mom. The effect was as good as a nerve block of the tibial nerve with a shot not unlike they’d give you before they’d operate on you’re foot. The Ketamine was as effective. Mom would get flares but she would recover rather than 1 hour recovery time it was more like 10 minutes. About ten times faster recovery time with cold water to a flare. The difference was pain was reduced. She only tried Ketamine cream for three days and had a bad nightmare and her feet were hyper active for a short time like a bad rem state reaction or something. And she didn’t want to try it again. She also had heart palpilations with the Ketamine but that was with the Amitriptyline. I realized the Amitriptyline could cause people to have their feet “warmed” and it’s acting on 5HT Seratonin much like Risperdol which caused my mom’s burning foot syndrome. With odd side effects of the Amitriptyline and similarities I asked the MD if we could go with just ketamine, because mom is already taking ATIVAN for pain and that’s a nerve pill. She tried it with less side effects but had a GATE DISTURBANCE so we quit after 3 days of applications. The first day we tried it with the mixed formula she said her feet felt like they were in a state of euphoria. In other words her feet felt like they were high. I never heard of that term before. She said her pain was as low as 2 or 3 on a scale of 1 to 10 and that the ketamine was better than all her other drugs combined. However she was still taking those other drugs as well.
Mom had a opiod reset of tolerance from the ketamine. She also went into the hospital and lost about 30 pounds afterwards for other reasons. But she has gate disturbances and is less steady on her feet, probably from the ketamine. She also had a permanent opoid reset it seems. The pain pills work with less pain pill on her now and we dont’ need as many pills. So it’s a mixed bag.
I don’t think you need to take ketamine internally to deal with EM it’s always been used in cream form and the 2 percent cream I believe worked better than the 1% cream. I can’t even imagine the huge doses you’ve been taking from the compound pharmacy and pain clinic. That’s a lot they really hit you with a lot of it and if it didn’t work well for you I’d think the side effects would outweigh any benefits by a huge amount. Ketamine is definitely a dangerous drug and I think most doctors would urge people to ease into it with small doses at first. Also for some patients it may cause psychological side effects, for example it’s not recommended for someone treated for manic depression.
As with any drug consult with you’re doctor. My mom also didn’t respond to well to over the counter lidocaine patches, but she likes cream with lidocaine in it mixed with a cream Camille Beckman’s french vanella cream 50/50 mix put on her feet each night. She puts a lot of lanacaine cream on her feet and it’s over the counter. Because it’s over the counter we have to pay for it out of pocket and can’t get a prescription for it from a compound pharmacy.
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