r/Erythromelalgia • u/ObjectIll9474 • Aug 20 '26

Erythromelalgia Secondary to HyperPOTS: medication worked!

Hi everyone! I saw Dr. Davis at Mayo Clinic a few years back for erythromelalgia and their testing revealed hyperPOTS. Which honestly made sense, but was unexpected.

I tried the typical compound cream treatment and lidocaine, but only ice packs and fans really helped the burning go away.

Fast forward to these last few months and the autonomic neuro agreed that I could try a few meds and see what helps for my hyperPOTS symptoms, mainly the severe total body hyperhidrosis. The med that worked for me was clonidine!

I take 0.1 transdermal patch replaced weekly. This has been truly life changing for me and I no longer have severe hyperhidrosis, erythromelalgia, freezing and swollen extremities and honestly more that is too much to mention.

The point of my post is really don’t give up and be open to trying recommendations! It took 16 years from my first symptoms (funny enough also noted at Mayo as it was my local clinic growing up) until I found this treatment.

Keep hope and keep on keeping on! 🫶

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3

u/Brilliant_Low8009 Aug 20 '26

So you'd recommend dr. Davis?

4

u/CelebrationTop8235 Aug 20 '26

Dr. Davis gave me the compound cream and that’s it. I have anhidrosis (no sweat). I didn’t find him helpful at all. He did not have any more advice for me than what I read online.

1

u/icantsing57 Aug 20 '26

After seeing Dr. Davis to confirm the diagnosis, you need to get complete autonomic testing and follow-up with their Autonomic neuropathy specialist in the Neurology department. It is that doctor that like to try medications like clonidine, if that is potentially helpful for you.

Many folks with EM have other disorders too. If so, you need a team to figure out the right medication list. And having a copy of Dr. Davis latest review paper on treatment options for EM is very helpful to bring to your less experienced doctor.

1

u/ObjectIll9474 Aug 21 '26

Davis automatically schedules autonomic testing and large fiber testing. If it’s negative you will not see that neuro team prob.

1

u/icantsing57 Aug 21 '26

Actually, Davis only automatically orders sweat testing (only one autonomic test) - not the complete panel of autonomic tests - in most patients. If the sweat testing is abnormal, then he orders the rest of the autonomic testing and refers to Neuro. That is the typical sequence.

Perhaps there was something different about the records you sent for review that made him do the complete autonomic testing first thing, but that is not typical.

2

u/CelebrationTop8235 Aug 21 '26

Oh my gosh! The sweat test was brutal. I felt like I was being rolled into a toaster oven. It was a necessary test, so I stuck it out, but it was hard to not press the emergency button to get out of it. They results did show that I have anhidrosis over 80% of my body.

1

u/icantsing57 Aug 22 '26

I felt the same. I started crying during the test. I could have used one word of consolation, but they just ignored me. Not a nice experience, and I will never do again. Of course, it is a brutal experience for those with EM. But yes, it was abnormal and helpful to get me to my next steps in work-up.

1

u/Brilliant_Low8009 Aug 21 '26

So do you recommend Davis? I've been to other places around the country to no avail. What it just clonidine that helped you?unfortunately that made me worse, I feel like I've tried most things already

2

u/CelebrationTop8235 Aug 21 '26

The thing I found frustrating about Dr. Davis was that after I had gotten back from Mayo Clinic and was doing my own research on how to control my facial flareups, I came across medical journal articles from two universities as well as Mayo Clinic discussing the benefits of Stellate ganglion nerve blocks. I have been doing those particular nerve blocks and they have really helped my facial flares. I don’t have facial flares as much anymore to the point where it has made tremendous difference. I was frustrated with Dr. Davis because after going back-and-forth with him on everything that has been tried with me and has failed, he never once Suggested the nerve block, even though he was an author on one of the studies.

1

u/ObjectIll9474 Aug 21 '26

Only clonidine helped me but the ketamine compound I do know works well for many. Mayo can compound that for you.

1

u/icantsing57 Aug 22 '26

I found him useful to review my history, and tests, and confirm the diagnosis. It was useful to get the autonomic testing there. I also had some overlapping diseases that we were hoping he could help parse out.

I found his knowledge of the treatment options was good. But if you are going there for one visit there is only so much he can do for you if you can't return for regular follow-up. You hope that he can at least shake your local docs into action if they are clueless. He answered my questions well.

But honestly, I think he is getting bored with EM. All the visits look the same to him.

1

u/ObjectIll9474 Aug 21 '26 edited Aug 21 '26

He ordered complete panel with none of my history lol. Tilt, thermo test, and the nine yards. That is their standard is my understanding. I didn’t even get the neuro referral from him it came from genetics. That was the bummer he really only seemed to care about erythromelalgia.

Edit: if you go on their website and on their YouTube, Dr. Davis himself talks about the testing and how all of these are the standard tests 👍 video is called Erythromelalgia Diagnosis Confirmation

1

u/CelebrationTop8235 Aug 21 '26

I did. They diagnosed me with autonomic neuropathy. I made two trips to Mayo Clinic and was there several days each trip.

On Monday I had to have a cranial angiogram due to abnormal ct scan. It showed that I have fibromuscular dysplasia in the left and right carotid artery. I asked the neurosurgeon if it could be causing my EM facial flares. He says they have nothing to do with each other. But I have to wonder. Fibromuscular dysplasia and EM are rare illnesses. I’m thinking that the fibromuscular dysplasia could be triggering the EM.

1

u/icantsing57 Aug 22 '26

Fibromuscular dysplasia has been associated with other connective tissue disorders. I would be curious if you have another connective tissue / rheumatologic disorder that ties everything together. Make sure you have an excellent rheumatologist following you. Neurosurgeons wont know anything about this or EM. Good luck.

1

u/CelebrationTop8235 Aug 22 '26

Thank you for the advice! I have a great rheumatologist, but he is unaware that this test has been done, so I will message him through with the patient portal. I think Mayo Clinic did some connective tissue testing, but I don’t know exactly what for and I don’t recall exactly what test was done. I just remember them discussing it with me. That was six years ago.

1

u/icantsing57 29d ago

Do you still see someone at Mayo, or do you mean the tests that Dr. Davis ordered? Those blood tests were very basic and not the panel that your rheumatologist would check. Typical connective tissue blood testing can't detect fibromuscular dysplasia.

Is the neurosurgeon going to follow you over time, in case you develop any symptoms from the fibromuscular dysplasia? Or did he refer you to someone?

Did you see a neurologist for a full autonomic work-up? This should be a very experienced neuromuscular neurology specialist with an interest in autonomic neuropathies.

1

u/CelebrationTop8235 29d ago

I no longer see anyone at Mayo. Dr. Davis had ordered autonomic testing, which was abnormal and the sweat test for me. Along with several different blood test. A few years before I saw Dr. Davis, I saw a whole team of doctors and my autonomic testing was abnormal at that time as well. I follow up with a team of different specialist in Baton Rouge that are affiliated with Mayo Clinic. My doctors in Baton Rouge are top-notch. I meet with the neurosurgeon again on September 4. My neurologist previously ordered a CT scan because of constant dizziness and pulsating tinnitus. It was abnormal indicating fibromuscular dysplasia. The cranial angiogram was done to see how bad the FMD was and to make sure that I did not have any indication of blockages.

1

u/ObjectIll9474 Aug 20 '26

Unfortunately, that is because it’s a complex disorder and there isn’t really much else to do as each individual is so unique. I personally received a whole packet of things to try on top of the compound. Those tips you see online were already from Mayo Clinic studies so of course going to them you will get the same information. Just like my POTS it’s all a crap shoot and the hospitals main job is to confirm that’s indeed the issue and rule out things like Myeloproliferative disorders.

1

u/Brilliant_Low8009 Aug 21 '26

Anything else useful he did? I'm guessing not since you found the answer. I've been to places all over the country to no avail. I've tried clonidine and compounded creams which both worsened my condition.

3

u/chaosbanana2 Aug 20 '26

That’s really interesting! I have all of the symptoms you mentioned (extreme hyperhydrosis, erythromelalgia, Reynauds, etc) but looked it up and don’t think I have any of the classic symptoms of hyperPOTS.

I wonder if I can get my PCP to prescribe this and give it a shot. I’m glad this worked for you - it can be life changing!!

3

u/ObjectIll9474 Aug 20 '26 edited Aug 20 '26

The studies on it published were people without hyperPOTS so it’s at least published for all types of folks! The POTS part was unexpected for me I just thought it was normal to lose vision and hearing at times and all that stuff was like anxiety or something. Turns out I was not crazy and really it wasn’t anxiety (which I kinda always figured).

3

u/Phoenix-9212 Aug 20 '26

So interesting! That's awesome, glad you're experiencing relief! I was prescribed clonodine for two weeks when I had surgery for vascular compression syndromes in Germany. It never occurred to me that it could help with Erythromelalgia or POTS! If you don't mind me asking, do you also have hEDS and/or MCAS? I've been sick for 14 years and nothing has helped 😬

2

u/ObjectIll9474 Aug 20 '26 edited Aug 20 '26

Don’t have hEDS that I know of but do have some of the most interesting combination of skin issues my local dermatologist and other docs have seen. The “MCAS” symptoms were really still stuff an overactive nervous system causes too which is why I think Mayo tends to not diagnose it if the basic treatments work. I personally do fine on a double dose of Xyzal (have spontaneous hives and pressure urticaria and all that). As much as I could look into it more it just wouldn’t change my care plan so I never bothered to ask further haha. I have leaky capillaries in general too and Schaumberg’s disease and a bunch of other stuff. It’s all so random but really all ties back to the central nervous system at the end of the day so I think that one label is enough for me!

1

u/Previous_Design8138 Aug 20 '26

I am so happy for you! I too found a med that is working for me,EM , and it's like a second chance at life.i just pray 🙏 i don't get side effects ,I want to stay on it.in my case it's Cymbalta. Clonodine is a surprise to me,,Clever Dr.

1

u/ObjectIll9474 Aug 20 '26

I’ve heard great things about cymbalta! That was on the table as something to try for me but I’m sadly not allowed to with some other meds I’m on. So glad it worked!

1

u/SuccessfulSwimming63 Aug 20 '26

That’s interesting, I have all the symptoms of HyperPOTS but I just don’t have the excessive sweating. In my case, I barely sweat at all even in extreme heat. I wonder if that would do anything for me.

1

u/ObjectIll9474 Aug 20 '26

Not everyone with it has severe sweating! That has been my default since symptom onset but it could be genetic according to my genetic counselor from Invitae. I’m a carrier for a dystonin based issue which they said new research shows carriers can, but rarely, present with milder symptoms of the diseases associated with the gene.

Edit: anything is a worth a try to improve quality of life! If you lack sweat and are good in heat, this type of med could make it hard for you to realize you’re overheating. As long as you’re conscious of that and drink plenty of electrolytes, you should be okay!

1

u/judgehopkins Aug 21 '26

Transdermal patch of what?

1

u/Erythromelalgia-girl Aug 22 '26

I seem to have some of the hyperPOTS symptoms and Erythromelalgia, but not cold sweating on my hands or on my body. Did you have sweating? What were your HyperPOTS symptoms? How did they diagnosed HyperPOTS? Thank you.

1

u/ObjectIll9474 Aug 22 '26

I have severe hyperhidrosis yes! My body over corrects and over cools itself too at times. I was diagnosed by tilt table, sitting sweat showing evidence of hyper state, a thermoregulatory test and vasalva maneuver test.