What causes ADHD? Some intriguing findings

A short paper in the current issue of the Journal of Child Neurology (Hypokalemic Sensory Overstimulation) raises some tantalizing possibilities:

  • In some patients, ADHD may be caused by an excess of sensory stimulation arriving at the brain, rather than being a disorder of the brain itself
  • For such patients, potassium supplements may be an effective treatment
  • ADHD symptoms may indeed be triggered by sugar in some people
  • ADHD and PMS may be related in some women –and their PMS may also be treatable with potassium
  • Dentists may be well-positioned to identify possible ADHD patients

Conventional wisdom is that attention deficit disorder results from a problem in the brain. This seems reasonable since the stimulants used to treat ADHD work on particular pathways in the brain. But conventional wisdom is not getting much traction: researchers have studied the genes in these dopamine pathways and found only weak effects on ADHD.

Now, a group of Harvard-associated doctors –including Health Business Blog contributor Michael Segal MD PhD– has suggested a different model for ADHD based on an excess of sensory stimulation arriving at the brain. They came up with this model by stumbling across a family with some peculiar issues, and by having the background to understand the importance of what the patients were describing. Interestingly, they were able to treat the ADHD with a simple over the counter medication – potassium supplements.

The authors were not originally focused on ADHD. They were drawn into the area when a woman described to a neurologist that one of the core features of ADHD, a sense of being bombarded by sensory input, suddenly went away, –as if a shade had been pulled down.” This occurred 20 minutes after she took an oral potassium supplement for muscle cramps.

The neurologist was intrigued. It reminded him of the muscle disease hypokalemic periodic paralysis, in which ion channels in muscle become over-active when potassium levels in the blood are low. The woman described the factors that triggered her symptoms, and they were the same as those noted in the muscle disease: meals high in carbohydrates, food high in salt, and resting after exercise. Her son, who was having attention problems in school, also found the same triggers and got the same benefit from taking potassium.

Hypokalemic periodic paralysis is part of a family of “channelopathies.” Other variants were known in the heart (producing arrhythmias), in the brain (producing seizures), and in sensory nerves (producing pain). No variants producing ADHD had been described, and it would be difficult to suggest a channelopathy producing ADHD since the evidence in this family seemed “soft” –based as it was on subjective patient reports.

That all changed one day. The boy got a shot of the local anesthetic lidocaine for minor toe surgery, but he insisted that the numbing medicine wasn’t taking effect, even after repeated shots. The surgeon was skeptical but touched the boy’s toe lightly with his instruments and was surprised when the boy could describe exactly where he touched. The doctors knew that lidocaine works on sodium channels, and realized that an insensitivity to lidocaine would fit very well with a channelopathy causing sensory overstimulation. When the mother heard the details later that day she recounted that lidocaine hardly worked for her in dental procedures. Now the doctors had some objective evidence suggesting a channelopathy accounting for the core symptom in ADHD.

The way to confirm such a hypothesis is to find the gene for the mutant ion channel, which is hard to do using a small family. The doctors knew that it would take more families to do “positional cloning” to find the gene, and wrote up their paper, hoping to find other families. The paper appeared in early January and within days of publication another family sent an email to the contact address on the paper to describe a similar story in their family. If you have a story like that you may also want to make contact using the email address listed here.

Until the gene is found it is hard to say whether this sensory overstimulation form of ADHD is common or rare. Some factors suggest this clinical picture may be common – some people with ADHD think their symptoms are worse after consuming sugar, and occupational therapists describe a “sensory integration disorder” in many people with ADHD. One intriguing line in the paper even suggests that the sensory overstimulation may show up in ways that might not have seemed connected at all to ADHD: the mother “suffered for many years from strong menstrual pelvic cramping and noticed in her mid-40s that oral potassium supplementation blunted the menstrual pain to a dramatic degree.”

As people become familiar with the sensory overstimulation model of ADHD and researchers do the genetics we may soon have an understanding of ADHD at the molecular level and have new forms of treatment and prevention.

January 11, 2008

55 thoughts on “What causes ADHD? Some intriguing findings”

  1. My daughter aged 16 was diagnosed with severe adhd at 6. Since I can remember she has complained regularly of cramps in her legs and shoulders. She has a muscular build and is very good at sport but with little suppleness (cannot touch her toes). Perhaps this is the answer for her. She also tends to have dry skin particularly on her legs.

  2. The ways to “help parents whose kids have attention deficits navigate through emerging research” are mostly indirect.

    One major way is to encourage the research in the first place. As an example, the doctors involved in this ADHD study had affiliations with one of the top research hospitals in the country, and one had run a lab studying ion channels, leading to the crucial insight behind this work. It is expensive to have lots of clinicians with research training, but when it results in the “prepared mind” of a clinician coming up with an advance in a disease that affects millions of people that reminds us why it is important to spend some money on medical research and MD-PhD programs.

    Another way is to encourage doctors to communicate with the general public. This is particularly important with something like ADHD, where the average general practitioner is not going to spend enough time to elicit a history based on subjective impressions. Blogs are a great way of doing so since the results can be amplified by others picking up the story.

    Such public awareness coupled with some gene tests will do much to revolutionize the way ADHD is diagnosed and treated.

    Most of what a president needs to do is keep existing infrastructure humming along, as well as encouraging “thinking outside the box” and encouraging the notion that the public should hear directly from doctors in public contexts.

  3. For Marina:

    People with ADHD and cramps may well turn out to have this newly described form of ADHD. Once we have a gene test we will be able to answer such questions. In the meantime the most important thing to do is assemble existing information so one can choose a few families with a similar enough clinical picture as to likely have the same gene defect. Once the first gene abnormality is found it becomes a lot easier to make additional progress.

    So at this stage we need to develop a “registry” of some families who appear to have at least two affected individuals and hopefully it will not be hard to find the first gene.

  4. My daughters and I are diagnosed with ATP1A2 Familial Hemiplegic Migraine (not the calcium channelopathy rather the sodium potassium form of FHM) and we see MAJOR overstimulation issues in my daughter Zipporrah who is 4 yrs. old. She literally climbs all over you, wriggling, and can’t sit still when she is having bad days. I am wondering if or how this could relate to what you are saying???

  5. Darla Klein:

    This sounds like it will not be the same gene, but may turn out to involve some final common pathways that are similar in the nervous system.

    Even for pure ADHD we imagine there will be quite a few genes, a phenomenon that is likely to be familiar to you from your knowledge of the literature about migraines. However, as we learn more about each gene and its clinical picture we will learn to ask more information that will allow us to deduce a lot from history and physical examination.

    Based on our paper and on similar descriptions we’ve now heard from several other families, work-up for ADHD may come to include collecting all sorts of information not originally appreciated as being related to ADHD, including:
    1. Response to local anesthetics
    2. Symptoms of premenstrual pain
    3. Effects of carbohydrates, sodium chloride and exercise.
    4. Episodes of transient limb weakness following mild injury
    5. Muscle cramps
    6. Need for sunglasses

    I’m sure we will get much more knowledgeable about such things as we make progress similar to that already made in studying channelopathies and other gene abnormalities in migraine and epilepsy.

    1. I started taking potassium in order to get rid of Premenstrual Dysphoric Disorder. I noticed that my Attention Deficit Disorder is completely gone.

  6. My 4 year old son has ADHD that is worse after high carb meals. He has lots of sensory issues and speaks of leg cramps.

    I asked his Dr. about the potassium and if we should try it. She did not know about it and would not give me a dossage. Where can I find this imformation?

  7. I’m also interested in finding information about potassium supplements to show my son’s dr. My son takes Focalin for ADHD. Would the focalin mask any benefits that potassium supplements might demonstrate?

  8. There is a good article on managing potassium supplementation at http://www.translational-medicine.com/content/6/1/18.
    Some people can have problems with potassium supplements and people should discuss taking potassium with a doctor, but the article has a lot of practical tips from a doctor with another disease with similar potassium issues.

    As far as interactions with stimulants such as Focalin, we haven’t tried the combination. The two treatments work by very different mechanisms, and we don’t know if some people will do better with one and some with the other, or if many people will benefit from the combination (or whether there are problems with the combination).

    Once we find the gene and can divide people into subtypes better we will be able to be much more helpful on such questions.

  9. I read this article with fascination. The youngest of four children, I have always been referred to as “hyperactive”, although no one actually thought the descriptive term applied clinically. I was, however, clinically diagnosed with ADHD a couple of years ago.
    My mother also has ADHD-Inattentive Type and shows signs of Sensory Integration problems. I also have a sister who has a great number of symptoms of the Highly Organized Type of ADHD, and my brother also shows many symptoms, although I’m the only one with clearly Hyperactive symptoms.

    I’m not sure about the experience of the others, but my brother and I both have such overwhelming anxiety and fear regarding dental procedures that we have to resort to very expensive IV Sedation. After reading your article and thinking over all my past horrible experiences, I think insensitivity to lidocain could possibly explain much about my problems with dentists! As an example, during one root canal using Nitrous Oxide the endodontist became so angry and frustrated that he ripped off his gloves, threw them on the floor, and exclaimed “That’s it! I just can’t work on you!” As I experienced the episode, it seemed that he turned the Nitrous up very high so that it seemed to me I was unconsious for a time. He must have turned it off and turned on the Oxygen which allowed me to groggily become aware of his actions. I had no idea what had happened to make him so angry until he said something like, “I just can’t get you numb.” The worst part was that in his anger he quickly shoved me out the door. Because I was still so groggy, I stepped right out into oncoming traffic and was only saved by my sister who was there to drive me home.
    It seems to me, that, aside from this particular experience, if I have an insensitivity to lidocain, it would go far to explain why I have such dread, fear and axiety regarding the dentist! I can also recall multiple occasions when I’ve had to receive injection after injection and times when I still felt the sharp, severe, stabbing pain in the dental chair.

    I also have constant problems with cramping – not just nighttime cramps. For example, when I try to open a jar that’s over a certain size, my hand will cramp and freeze in position. I get constantly frustrated when doing most tasks with my hands because of the frequent pain and cramping that seems to always accompany any dexterous movements. My nighttime calf muscle cramps seem to only coincide with the times I forget to take my Thyroid medication for a few days (I have Hypothyroidism).

    I have had Fibromyalgia symptoms all of my life. Some of my first words as a toddler were, “Feet hurt! Feet hurt!” The Fibromyalgia has become disabling in recent years. I have been tracking my symptoms in relation to both my ovulation and menstrual cycles for more than nine months now and can say without a doubt that the each month, the night before my period begins, I do not sleep at all. In addition, I have many classic PMS symptoms and all my Fibro/ADHD symptoms are routinely more severe when my estrogen level drops. I have also had surgery for endometriosis in the past. Also, although I have hazel eyes, not blue, I do require sun glasses whenever outdoors. My light sensativity even bothers me during nighttime driving, for example, I always skew my rearview mirrors so the headlights behind me are not in my field of vision.

    I am very interested in your information about Potassium supplementation (which kind of Potassium, Dosing, etc) but I would also like to see if I can help with the research for the gene. Would I be required to travel to your location or could a cheeck swab or such be done by my local doctor or shipped to you? I could figure out a way to travel to you, if that is necessary. I would very much like to help. I will also speak with the rest of my family in an attempt to convince them to participate as well.

    Please forgive my garrulousness. 😉

    — Stephanie Handley

  10. Both of my sons ages 11 and 12 have been diagnosed with ADHD. (I have just the two boys, no girls) The older son takes Adderall and the younger son takes Straterra. I have been diagnosed with Hypokalemic Periodic Paralysis (clinically, yet have not been diagnosed genetically). I am followed by a neurologist at the local MDA clinic. I take a combination of Daimox, spironolactone and oral potassium (RX 20 meq as needed). I also take mirapex for restless leg. Both of my sons complain of muscle cramping. Have not noticed lidocaine intolerance, but only the youngest has had a dental procedure requiring it (once). I am very sensitive to light and if my K is low I am MUCH more sensitive to light and noise and all other stimuli.High carb, high sodium makes me very ill. Haven’t seen it to be a problem with the boys. My older son complains of sensations in his legs sometimes but it is hard to determine if it is similar to my restless legs or if it is indeed weakness (as he sometimes calls it). Please let me know if this helps at all. Thanks, Wendy

  11. To Stephanie Handley:

    I’m sure there are lots of people who are told they have dental anxiety when in fact they are getting dental work that is effectively without local anesthesia. That is why one of the authors on the paper is a dentist.

    To Wendy:

    We’ve heard from other families with some classic hypokalemic periodic paralysis findings as well as hypokalemic sensory overstimulation. So far it looks like this is a genetically distinct form of hypokalemic periodic paralysis.

    To both:

    We’ve seen light sensitivity in some of the other families too.

    Write to me at the email address given in the abstract referred to in the original post and I can get more details to you.

  12. I too, have a son with ADHD, who is struggling. Aderrall and Ritalin were successful for three months each. I now see improvement with EFAs, B12 supplements and some diet restrictions. Interestingly, he complains constantly during the summer of the sun in his eyes, and also suffers with muscle cramps. Could I learn more about dosage for potassium gluconate? Thank you so much.

  13. I found this information on Hypokalemic Sensory Overstimulation when I was researching which medications I am taking could be blocking the effects of lidocaine. I have had chronic migraines since I was about 7 years old, and in my 30’s (I am 44 now), they became more frequent (2-4 a week), requiring me to take some maintenance medications and migraine aborting medications. I could find no evidence that my medications could be blocking the effect of the lidicaine.

    I also have “Sensory Integration Disorder”. I am writing this from my almost dark office at work. I have always needed sunglasses outside, whether sunny or not. Any light is too much. I have always had times that I felt that there was too much sensory stimulation from lights and sounds, and I usually need to retreat from those circumstances. The only time I am forced to work through it is when I am at work.

    When I explained some of this to my mother, she told me that lidocaine hardly works on her either. She also has a history of migraines, though I can not say if she has any sensory integration problems.

    To try to rule out if this is part of my problem, I have a question: Is the serum potassium decreased in individuals with Hypokalemic Senory Overstimulation?

  14. It is not clear that serum potassium is actually decreased in “hypokalemic” disorders. Rather, it seems that everyone’s potassium fluctuates, and people with these disorders have symptoms when their potassium happens to be low (“hypokalemic”).

    Reasonable things to try are avoiding some of the triggers such as high salt meals and meals with lots of simple carbohydrates.

  15. Thank you for your quick response. As an added note, my migraines are preceeded by some mental confusion, and extreme sensitivity to light, sounds and smell. Over the past few days, I have been able to abort 3 migraines with potassium gluconate when the confusion and sensitivity began. Is there any correlation there?

  16. Debbie: We have heard scattered reports of people with ADHD + lidocaine not working well + migraines, but it is interesting to learn that potassium gluconate can be of help here too. Since your migraines sound very related to sensory overstimulation it is possible that the potassium is acting by reducing this stimulation. Another possibility is that many migraine disorders are due to channelopathies and there may be a direct effect on channels in the brain and its blood vessels.

  17. Thank you again. Just one more quick comment. As I first stated, Lidocaine has not worked well for me over the years, but most striking, was three maxillary blocks that I had done last week with lidocaine and there was no effect at all, to the astonishment of both myself and my dentist. We had planned to try again this past Wednesday with Septocaine, but a few hours before my visit, another dentist in the office used my Septocaine. My dentist agreed to let me try taking potassium right before my visit, and we would try the lidocaine again to see if there was a difference. She would like to say that the technique in the block was different, but it was not. I did get numbness in the whole area of the block, but it was not profound. I did though get numb enough to explore part of the tooth in question, and it was enough to remove some decayed areas that were causing me pain.

    We plan to use Septocaine that is kept under lock and key until I arrive in two weeks. Should I also take potassium before this visit? Also, could you give me the recommended doses for the potassium?

  18. My son is 6 1/2 and takes Focalin for his ADHD. Would you recomend that I try him on the potassium supplements and if so how much should we give him? I would like to discuss this with his psychiatrist who manages his medication. Can you tell me if the medication Focalin will mask any affect the potassium may have on him? Can you send me more information on this?

  19. Britta: We don’t know whether the potassium-sensitive form of ADHD that we described is a common or rare form of ADHD, If people have a clinical picture that matches the one we described, particularly the lack of effectiveness of lidocaine, they should have their doctors look up our paper (http://www.ncbi.nlm.nih.gov/pubmed/18174562). Once the gene is found we should be able to do more detailed studies and offer more detailed advice.

  20. Dear Dr. Segal,

    Can you recommend a potassium gluconate dosage for a 7-year old boy, approx. 46 lbs. He is currently on Metadate CD 10mg per day but the effectiveness is waning. Thank you so much.

    John S.

  21. John S. – Even for over-the-counter pills such as potassium gluconate it is best to talk over your plans with a doctor, though you may need to mention our paper (http://www.ncbi.nlm.nih.gov/pubmed/18174562) for them to have any idea of why you are interested in trying potassium. A pediatrician can give advice on how to scale down the dose we used in the paper to an appropriate dose for a child, and would be aware of the rare situations in which taking potassium pills could be harmful.

    I would also stress that I’m not aware of anyone having checked for possible interactions between metadate and potassium, so some extra caution is warranted.

  22. My son is diagnosed with ADHD. From day one he has complained of leg cramps. I am going to discuss these findings with his doctor at his next med-check.

    Interestingly, my daughter is also diagnosed with ADD (though not taking meds) and she has complained the numbing agent used by her dentist did not work. She also sufferers from horrendous cramping with PMS.

    I think I may be seeing a correlation here that I need to bring to the pediatrician. Thank you for sharing. I wonder how many pediatricians are aware of these findings.

  23. Hmmm… I’m another ADD-Inattentive with sensory overload issues. It seems like all of my senses are at max-volume, and can not be turned down the way most people seem to be able to. I’ve had Migraines for the past 20 years (since menarche), primarily with light/sound/smell sensitivities. I also require higher doses of dexadrine when PMSing.

    I am also insulin-resistant, and have noticed that the ADD is less… overwhelming since I’ve gone low-carb to control my blood-sugar. I have also not had a migraine or night-cramps since the low-carb transition.

    It never occurred to me to notice the link between the ADD and the Migraine /Night-cramps before, but I found your article after I drained an O.R. of Lidocaine with no noticeable effect. The surgeon was finally was able to get me numb with Ropivacaine(? I think that is the right one…) He mentioned that he was going to do some research and see if he could find any stats on Lidocaine resistance, so I thought I’d check too, and found this.

  24. StormFire :

    This sounds very much like what we described. One of our recommendations is a diet with no meals heavy in carbohydrates. This is similar to recommendations for diabetes, but for the opposite reason: in diabetes a lack of insulin results in glucose getting too high, and in hypokalemic sensory overstimulation, normal insulin production results in a normal drop in potassium and that produces symptoms in people who have this disorder but not in those without this disorder.

    Many people report migraines with this disorder, and migraines are also commonly found to be a result of ion channel disorders.

    I hadn’t heard of people trying ropivacaine before, but it is very similar to bupivacaine, which does work in hypokalemic sensory overstimulation, so it is not surprising that it works. As detailed in our paper, articaine is even better, but it only comes mixed with epinephrine, which limits the situations in which it can be used.

    If you would like more information please follow the link to the contact information given in the blog post. Your doctor should have a look at our paper, and I’d be glad to give him more details as well.

  25. Hi. I can’t believe I just found this post. I am researching Sensory Processing Disorders (my 4yr son will be evaluated soon). Through my research I found the info re Hypokalemic Sensory linked to ADHD (which I as the Mom have been diagnosed with) I am also (self-diagnosed) with lidocaine resistance (I HATE fillings) as well as terrible PMS since puberty. I want to speak with my doctors (I have a primary care doctor, a psychiatrist and neurologist that I work with.) What can I do for the next step in finding if my potassium is low, etc. Thank you

  26. People have symptoms when their potassium level is low, but it is not clear that people with this disorder have potassium levels lower than those of other people. The difference is that people with this problem have symptoms when their potassium is low. If taking potassium makes the symptoms go away, or if having a lot of salt or carbohydrates brings on the symptoms this is suggestive of this being the diagnosis.

    It will all get easier once there is a gene test, but in the meantime there are things on can do differently when eating and one can ask a dentist to use articaine instead of lidocaine.

  27. My son has ADHD and is not effected by numbing agents. We found out when he had to get stitches on his hand. It was horrible. I would really like our family to be in your study. I have a list of conditions that seem to correspond with PMS that are extremely severe and require ADHD meds, prozac, panic attacks, and head neck and shoulder pain that is constant.

    1. Hi Marissa,

      I also used to suffer from Inattentive Type Attention Deficit and Premesntrual Dysphoric Disorder. I started taking 600 mg potassium per day (I am supposed to do that for 4 months for pmdd). My attention deficit is gone. Instead of having breast pain for 18 days per months, I just have it for 4 days (I am also expecting this to lift, as I proceed further with the potassium protocol). Low mood had lifted as well, and bloating and constipation are gone too!

  28. I’m real glad to have come across this blog as I surfed on this topic. My daughter, who is 3.8 y/o exhibits the hyperactivity symptoms cited and I just realize that some of the occasional complaints she would make about pain on her feet or legs may be related to cramps. At least now I can also ask her pediatrician about potassium supplements as well as update the behavioral specialist we brought her to before on the possible use of this to improve her condition. We had enrolled her in a pre-school before as suggested to help channel her energy and improve her language as she used to just imitate words but now refuses to go back which I realize can be due to limitations she has experienced due to her condition.I will refer them and the school she went to which also has kids similar to her to this site as reading the comments has relieved me that something can be done about it.I also realized now why the dental procedure I went thru this first quarter for the removal of all my amalgam fillings prior to a cyst operation finally diagnosed as endometriosis was quite an ordeal. Previous dentists who worked on me said i was hypersensitive to pain but now I can ask them to check this site and see the connection. I will get back to this site again after I get to have my daughter evaluated again. Thank you so much for all the generous sharings and rigorous studies you have undertaken. God bless you all.

  29. As we noted in the paper (http://www.ncbi.nlm.nih.gov/pubmed/18174562), the alternate local anesthetic that many dentists have, articaine, works in people who are lidocaine resistant. For procedures elsewhere, bipivicaine can be used instead of lidocaine with good effect.

    Don’t expect doctors in general practice to know about this work until the genes are found and that work is published.

  30. Pingback: Rerun: What causes ADHD? Some intriguing findings | Health Blog
  31. Hello Dr.Segal

    I found a link to your article on sensory overload add in the add forum over a year ago.. that is what led me to fiqure out that i too have a ion channelopathy,,I wrote to you last year and you were kind enough to get in touch with me..Next week i am sending my blood along with my sons to take another step in the diagnosis of my family with Andersen Tawil syndrome,,I truly believe that these conditions are not nearly as rare as they have been presented to be..and are so much more than just attention deficit disorder..MY family and I thank YOU karen…

  32. I have Hypokalemic Periodic Paralysis and I can definitely vouch for brain fog as well as horrendous uterine problems (which resulted in surgery for me), highly sensitive nerves resulting in chronic pain, and complications from anesthesia. Thank you for this article and I will be sharing it with others.

  33. Very interesting, thank you so much for this information. Just survived another ineffective anesthetic injection (actually, I asked for two)… glad to hear that I’m not the only one. It must be pretty rare as no dentist or doctor I’ve been to has encountered someone who doesn’t feel the anesthetic and are at a loss as what to do… so they generally go ahead with the procedure, and I deal with the pain. What I would like to know is what are the alternatives to the common anesthetic- any?

  34. In our paper (http://www.ncbi.nlm.nih.gov/pubmed/18174562) we describe using articaine instead of lidocaine for dental work. Since then, we’ve found that both individuals described in the paper got good local anesthesia from bupivicaine instead of lidocaine.

    The estimates are that about 4% of the population is somewhat resistant to the anesthetic effect of lidocaine. Dentists should be prepared to offer these substitute treatments.

  35. I would be interested in getting a copy of your paper and the dosing amounts for potassium. My father, myself and my son are resistant to lidocaine and some opiates.
    I am not ADHD but my son is as well as my nephew so I guess we have a genetic trait at work.
    Please keep my e-mail if you need people for your study. I am so tired of telling the doctors that I do no go under well for surgery, do not get the full effects of the after surgery drugs and for sure the dentist and I have had more than a few issues. After reading your article, I did have some dential work done and he agreed to try arcaine. It did work for a very brief time but did not last nearly long enough. I thought the problem might be the CYP2D6 gene since I also had a reaction to codene. It will be so nice to show your paper to my doctors so they will not just think I am a whinny person. Pat

  36. Wow, what interesting concepts I happened upon here today.I have experienced some sort of wide-spread pain syndrome over the past 6 yrs or so that has become nearly intolerable over the last 2 yrs. Along with the severe pain, fatigue, lack of restorative sleep, etc., it has become very difficult for me to focus and concentrate, often with ‘brain fog’ and some memory loss; both short- and long-term. At first I believed these cognitive symptoms were related to stress, since I continued to work a full-time job until a year ago, which was extremely difficult considering the way I felt. I dismissed the effects of sleep deprivation since I had completed my college degree with honors just 4 yrs prior as a single parent with a young child who didn’t sleep more than an hour at a time for 5 yrs. The last 2yrs friends, family, and coworkers who barely knew me at all, suggested that I need medications for ADD. At first I tried to dismiss their comments, but when I quit my job and gained 50+ hours per week and yet still couldn’t complete a single thing, it could no longer be denied. Interestingly, all of my health problems, physical, neurological, and cognitive, seem to have worsened in the last 2 yrs since my menopausal symptoms have subsided. I even blamed my mental fog on menopause too. Then when I read here about numerous people experiencing severe cramps and PMS as well as resistance to lidocaine, I began to have a real “Aha!” moment. I was ready for a hysterectomy at age 13 from the pain; not to mention all the other miserable symptoms. I have always known about my problem with lidocaine and have always warned every dentist I ever visited. Some have administered so many injections that they feared reaching serum toxicity as I reported feeling strange sensations in my feet and legs. I have always rejoiced in the knowledge that I do not have wisdom teeth requiring extraction. During my cesarean section, my physicians found it impossible to believe that the spinal block I received was inadequate, but they administered general anesthesia at my request anyway. As a young girl I often suffered from leg pain, but my mother just called it growing pains. She also mentioned fairly often that I have always had a low tolerance for pain. I thought my sensitivity to sunlight was related to light-colored eyes, and I have found loud noises to be painful for many years. Thank you for making your study available for us all. No doubt I never would have correlated any of these parts of my history. I plan to at least mention some of these points to my doctors and direct them to your study. Meanwhile, I will speak to my siblings and try to get more details of their health history. Thanks to all who have shared their stories here too.

  37. I was pleased to see this post as it flipped on a light for me. I’m an adult female with inattentiveness-type ADD and though I’m petite ( 5’3″, 106 lbs.) and generally very sensitive to medications, lidocaine has very little effect on me. Dentists are always surprised when I say, “I still feel that.” Then, unfortunately, they often say, “Oh, you’re just feeling pressure,” which is soon followed by me flying through the roof in pain and me detailing precisely where they touched.
    I, too, struggle with PMS and ADD meds were rendered virtually useless during the week prior to getting my period. (By the way, for female readers – the PMS was finally mitigated by supplementing my estrogen with an estradiol patch.)

    My mom and sister – same story on the PMS front, though no ADD. Plus, we all get toe cramps.

    Should you need further participants in a study to identify the gene at work, I’m open.

    One last item to toss in the pot: I have blue eyes and sun sensitivity. In fact, I had a huge (11 mm) choroidal melanoma removed from my right eye six years ago. So, sensitive to sun? Hell yes! I bring this up because the incidence of eye cancer is so rare and is more common in blue-eyed people. Perhaps there’s some genetic cross-over there?

  38. I’m glad to find this, though only after having a lot of dental work where they’ve had to give me a ton of anesthesia to get me numb. I have ADHD, but I’m not currently being treated. I’m also horribly dental phobic, and avoided for 7 years until I broke a tooth. I remember as a kid having something done and I could still feel it. I’m going to the dentist now, but unhappily. When I get lidocaine, it feels like something is happened, but unless I’ve gotten a lot more than what most people get, I’m still going to feel it. It always takes forever because they have to give me so much. Then today, finally, after 3 cartridges of lidocaine, it still not being numb, someone suggested they get septocaine for me (I’m getting this done at a dental school). Someone asked if I have red hair (I don’t naturally). A few minutes later, it was finally numb. I await the day this is widely known, and it doesn’t take so many trials and errors for others, and hopefully prevents some phobias for some people.

  39. It is refreshing to see that others have been struggling with this issue along with me. I have had impacted wisdom teeth removed, cavities drilled and filled, root canals, fingernail removed…..all without effective pain remediation.

    No matter how many times I mentioned that I could still feel everything, they would still give me another shot and wait for it to work. Eventually they would tell me it was all in my head, or that I was just feeling pressure and they would go on with the procedure.

    A few years ago I got a new dentist, and when I mentioned to him that Novacain/Lidocain had no effect he surprised me. He was aware of this condition and knew what to do about it. Whatever he is using is working. I assumed this meant that the medical community was now aware of this issue and had found a solution.

    My wife recently took my boy to the doctor for a fairly minor procedure. He had been in before for a partial toe nail removal and after no effect from Lidocain, they gave him a general anesthesic to knock him out. I made sure my wife understood that this Lidocain issue was very real and she needed to back up my boy on this in the future. She sided with the Dr. and tried to tell my 13 year old to man up.

    It became clear that I needed to speak with the Dr so I took my boy to his next appointment. The Dr was completely unaware of this issue and after I insisted she put a note in my boy’s file to put him under general anesthesia when pain remediation was necessary in the future. That’s when I decided to do a bit more research

    Thanks to Google, suddenly all those years of pain for me and my siblings makes sense. When I asked around the family, my mother’s side has been dealing with this for as long as they can remember. We all seem to have ADHD, cramping and an insensitivity to Lidocaine. There are 3 generations alive now that fit the pattern.

    If there is any way we can help forward this research, please let us know. No other child should have to endure what those of us on this blog have been through.

    Thank you for your research. I have just taken an over the counter potassium supplement and am not sure whether there is any effect on my ability to focus. I feel more directed, but this could easily be psychosematic.

    -Bill D. Seattle, WA

  40. Wow, I just started reading about this disorder and I know several members of my family that seem to suffer from it — myself included. I have experienced the problem with lidocain not working, muscle cramps, ADHD, accident-prone, and often have to wear sunglasses even indoors. Like I said a number of people in my family, including one of my daughters (and the other one to an extent), have this problem, too. Are you still needing families for your research?

  41. Julie: If you email me at the address listed at http://jcn.sagepub.com/content/22/12/1408.abstract I can put you in touch with those who are doing the genetic studies. They will probably start with families with several affected individuals, and hopefully the result will be identification of a gene. But in the meantime you can inform your dentist and doctors about workarounds to the problem of lidocaine not working well.

  42. Thank you so much . . . will send you an email right away! And I am going to pick up some potassium tomorrow to see if it makes any difference.

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