Does anyone else here see a connection between these. If EM is such a rare disorder, why are so many kids with the above symptoms/diagnosis having EM?
Our Doctor says it is not related to the meds. Never thought my child had ADHD, but a hypersensitive neurological system. Could that all be part of the EM "syndrome"?
Just searching.......
Hi Jame
That's a really interesting thought !
I'm diagnosed with ADHD / ADD-PI and sensory processing disorder.
I was diagnosed as an adult ( just two years ago ) but have had the same symptoms from these two disorders since childhood.
It certainly would make sense if somehow it all related back to a neurological issue / hypersensitive neurological system.
As a physician, I am very interested in this connection. It cannot be a coincidence that such a rare disorder has that common of a link. Did you get tested for the genetic mutation? I am wondering if that is also in common.
The neurologist here has only seen a couple cases of this in his career and he just wants to throw the pain meds at him which I really do not like to do, but will for now until there is a better solution. I myself am a doctor and I had never even heard of it after 25 years of practice. When my son was diagnosed Tuesday, I wondered immediately if there was a link between his CNS/PNS system issues.
Thank you for sharing.
Jame,
I wonder whether there is any connection between the use of Ritalin or Dexedrine with children with ADHD who have highly sensitive nervous systems and development of vascular disorders. I noticed that when my daughter was young and taking meds for ADHD she developed severe Raynauds in hands and feet. Although the symptoms lessened after stopping these meds, her feet and hands have never gone back to being normal. They are still hyper-reactive to changes in temperature or emotional states. (Just to clarify, although I have severe EM, my daughter is adopted--so no biological connection there.)
Dragica
There must be some connection somewhere. My son’s conditioned worsened rapidly around the same time that he started taking an increased dose.
Jame.
That makes sense to me. Ritalin is a very dirty drug that affects so many systems. We found Dexedrine (long-acting form) to be far superior causing less Raynauds symptoms and no rebound effects. Ritalin caused massive rebound effects (including hallucinations) and ever-increasing amounts because it increased metabolic rates. S, my dughter would burn through it faster causing terrible peaks and troughs in concentration, behavior and emotion.
Dragica
I have primary EM and found out by accident that taking Ritalin stopped my flares entirely. I could see that it may have the opposite effect on Raynaud's since Ritalin is a vasoconstrictor.
Dear NotSuffering.
That's wonderful news. Just wondering how frequent and intense your flares were before taking the Ritalin? And how much Ritalin did the trick for you?
Thanks,
Dragica
I had no life at all actually. I've had EM since 1998 but undiagnosed until I found it on the internet. Confirmed by doctors after ten years. I felt like a freak - my face scared people - I'd never met anyone with this disease. Still haven't in person. My own family shunned me as though I had somehow brought this upon myself. Until I finally had a name for it. As far as I am concerned and my family is concerned, I can live a somewhat normal life, where as before that was not possible. I am taking 25mg a day spread out over the day. I do not have flares unless in a heated room or car. I used to have flares even sitting in my house in the winter with no heat. I still am in a house with no heat but with Ritalin I began to sweat again when outside. That was huge....This disease does not define me as it once did.
HI Nor Suffering.
Thanks for your quick reply and info regarding the severity of your EM and dose of Ritalin.
I have come to believe that EM can also be a disease associated with the body's temperature regulation system. As long as I stay in less than 68 and use fans 24/7, take Cymbalta and Lyrica). and don't have skin breakdown, I am pretty good until the one major nightly flare. It's such a confusing disease.
I wish you well.
Cheers, Dragica
I am a mother of a child with this profile.
When he was born he was impossible to sooth and has always been emotionally disregulated. His “trick” was to tuck his toes in under our shirts or pants waist to regulate. The second his feet were separated from a warm body he started awake screaming and crying. This even from a solid sleep. We couldn’t ever put him down.
This evolved into exteeem sensitivity to socks and shoes and clothes. We would spend hours and tons of money looking for the right clothing.
Now at 12 he takes meds for ADHD and ocd/anxiety. We see significant positive effects on his education and his social skills and his ability to acknowledge when he needs help regulating (thank goodness we live across the street from a park where he can run). Problem is… Are these meds contributing to EM? Causing it? And I can not say with certantiy when he started showing EM symptoms because of his history with tucking his feet, with his sensory issues and because the EM symptoms we ignored for years until it became unbearable and worsened to the point of tissue damages.
We also had to find our own diagnosis and bring to Drs. for confirmation.
Jamie, do you have access to journal publications? A quick google search gave me this but I can not access the article on
Hypokalemic sensory processing, ADHD, and erythromalgia.
I am finding a lot of article about the sodium channeling and mutations on the ions that seem to share a lot with these stories. It is just a hunch
Hi Stacey,
Thank you so much. Do you know where you saw this article? Or what did you google. maybe I can find it
Thank you
Jamé
stacey said:
Jamie, do you have access to journal publications? A quick google search gave me this but I can not access the article on
Hypokalemic sensory processing, ADHD, and erythromalgia.
I am finding a lot of article about the sodium channeling and mutations on the ions that seem to share a lot with these stories. It is just a hunch
Sorry - I'm only just catching up on this thread :) - things have been chaotic!
I have been diagnosed with Dysautonomia, Raynauds, ADHD-PI and Sensory Processing Disorder.
end of 2013 I started taking dextrine to help with ADHD issues - although uncertain at the time - reflecting back over following months my sensory processing issues (which have always been a problem for me), actually worsened after starting medication - although my concentration improved some what - and memory (very slightly) improved.
I noticed a few flushing-red-burning episodes here and there, but didnt take much notice of it. I had had them before over the years - but it was confusing as to why it was starting to happen more often - I attributed it to the fact my physical health had been going down hill (before even starting medication).
I then had dose increased... and thinking back... may have been when I started to have daily to twice daily flares of EM symptoms.
I stopped medication mid 2014 as I didnt feel I was benefiting from it anymore and it was making HR / BP worse (was diagnosed with Orthostatic intolerance - secondary to Ehlers danlos type 3 - it's taken years to figure out what's been going on!)... got a little sidetracked - my point being no wonder HR/BP were also worse with dexdrine use.
Its been about 8 months since stopping - it took a little while after stopping dex for the flares to really decrease in number - but they have - so much so that EM-type flares dont occur all that often (maybe one every month or so - however still have my 'bad' patches where I will get a couple of days of flaring off and on - or three to four flares over a week / week and a half) - but nothing as frequent or intense as the period of time I was on Dex.
Wouldn't at all be surprised if EM is part of a syndrome that also includes ADHD - or ADHD type symptoms and sensory processing disorder due to fault / condition to do with CNS/ANS
Jame,
It would be a very interesting research to do--do you know of any studies? Not sure which comes first the chicken or the egg. Does an unstable nervous system make it more likely that we'll also find vascular symptoms like Raynaud's/EM? OR do the meds we give to people with ADD/ADHD cause the vascular symptoms we see? I just googled Ritalin and Raynauds and an FDA warning appeared about Ritalin use and vasculopathy--see the following link: http://www.fda.gov/Safety/MedWatch/SafetyInformation/ucm359945.htm
Dragica
Which is why for me (Primary EM) Ritalin has allowed me to live a life free of EM flares (I guess since it is a vasoconstrictor)
I did find a link between hypokalemic sensory overstimulation ( which has a lot of crossover symptoms with ADHD) and peripheral Channelopathies and EM. Of course the neuro dismissed it outright. My son has EXACTLY the same symptoms as the people in this paper except I don't know if he is immune to lidocaine. Although I tried topical lidocaine on his open wound on his toe with no relief.
this paper suggests an abnormality in hypokalemic sensory overstimulation is expressed in a peripheral sensory pathway. "Although attention deficit dis- order is often presumed to have a central basis,6 the cases pre- sented here suggest that overstimulation in a peripheral sensory pathway is another mechanism that could, in some forms of attention deficit disorder, explain the sensory over- stimulation."
Hypokalemic periodic paralysis results typically from mutations in ion channel genes. The mutations are chiefly in calcium channel genes or sodium channel genes, but a few cases may be due to potassium channel gene muta- tions.5 Channelopathies due to mutations of sodium chan- nels have been described also in hyperkalemic periodic paralysis,5 the cardiac long QT syndrome,7 several forms of epilepsy,8 and the intense pain syndrome, SCN9A-related inherited erythromelalgia.9 The family described here may have another channelopathy with localization to peripheral sensory pathways and a phenotype distinct from that of channelopathies described previously.
Attention deficit is a finding present in many disorders. The exis- tence of individuals with attention deficit disorder ascribable to a peripheral channelopathy would add a different mech- anism of action to consider. An ability to treat attention deficit disorder in some individuals with oral potassium supplemen- tation could be a useful treatment option, particularly in light of recent concerns about side effects of drugs targeting bio- genic amine neurotransmission."
So it seems like there might be a peripheral channelopathy that causes hypokalemia and that would cause BOTH the hypersensitivity AND the EM.
Psychostimulants (methylphenidate and amphetamine salt) are the pharmacologic treatment of choice for children with attention-deficit/hyperactivity disorder. However, psychostimulants have been linked to a variety of vascular problems, including peripheral vasculopathy. This article describes four boys with attention-deficit/hyperactivity disorder who developed vasculopathy during treatment with psychostimulants. These kids were all diagnosed with Raynauds…..but since EM is such a rare disorder ( I haven't seen it in 20 years of practicing) perhaps some of them were EM
Jame, thank you for looking this up! We are seeing a new psychiatrist to assist us in managing our child’s medication given his EM diagnosis. While this particular psychiatrist is “the best” in our area in regards to complicated psychatirc care with co- existing complex medical issues I don’t know that he has knowledge of EM. As a parent and physician how would you suggest I share this information? Should I bring in our conversation here? I am realy curious about the EM/and channeling mutations.
A couple of thoughts here:
Since 1 out of 10 children is diagnosed with ADHD in many countries, it stands to reason that a certain number of EMers will also have ADHD. That does not establish a connection between the two.
Also, chronic pain makes sustained attention more difficult, and some experience symptoms of brain fog or inattention. It is possible that they may be given a diagnosis of ADHD based on symptoms that are typical for chronic pain. ADHD is still a very non-specific diagnosis.