Jul 20, 2011

My Lidocaine Mystery SOLVED? It's Hypokalemia Sensory Overstimulation (probably)!

So one of my super weird symptoms since I woke up with POTS a year and a half ago is that I am non-responsive to "caine" drugs like Lidocaine and Novocaine.  This was never a problem before POTS, as I was always numb and drooling like an idiot after dental procedures - the way you should be if the Novocaine is working properly.

If you've read some of my prior posts on here, you may have heard about my Lidocaine/Novocaine mystery.  Early this past spring, when the surgeons tried to use a scalpel on my neck to insert a chest port (a pretty minor procedure) after giving me a shot of Novocaine, even though I was under anesthesia, I totally freaked out on the operating table, tore off the safety straps that hold all patients on the table when under anesthesia, and attacked the surgeon to prevent him from cutting me.  He said I went bonkers when he started to cut me with the scalpel, probably because I wasn't numb enough.  Thankfully I don't remember any of this because I was under anesthesia.

Well, a new neurologist I saw today may have figured out what is likely causing this weird problem in about 5 minutes. He thinks it's Hypokalemic Sensory Overstimulation.  FYI... "hypokalemic" means low potassium.

I have had low potassium levels for the past year and a half.  At first I was just drinking coconut water and eating bananas and white potatoes trying to increase my potassium naturally. That wasn't enough, but my doctor was reluctant to give me a potassium supplement because too much potassium could cause dangerous heart arrythmias.

In addition to the brawl I started in the OR when they inserted my chest port, I've had another situation involving 'caine' drugs not working.  This past May I went to Cleveland Clinic and they tried to do a biopsy on my stomach (looking for amyloidosis). They had me on the OR table, with a drape so I couldn't see what the surgeon was dong to my belly.  He gave me a 5mL injection of Lidocaine, to numb the area before he took the biopsy. Then he pinched me with his foreceps to see if I was numb yet. Nope, I could still feel everything. He gave me a second 5mL of lidocaine, this time with bicarbonate added which makes it work better in some people. Nope, I still felt everything. He cancelled the biopsy, because it wasn't just a little skin poke, it was a 1-2 inch cut into my stomach to retrieve fat tissue from around my stomach. The surgeon said, come back and next time we will knock you out before the procedure so at least you won't remember it. I happen to have my potassium levels checked by another Cleveland Clinic doctor the next day and it was really low.

For about 1 year before the Cleveland incident, I had what I described as "sensory overload." My sense of smell was heightened (like a canary in a coal mine), my sense of taste was heightened, my startle response was through the roof, anything that touched me unexpectedly (like a tiny little gnat landing on my shoulder) made me jump out of my skin, and things that were only supposed to be slightly painful (a blood draw) were excruciatingly painful.  Sometimes I would scream as if I was being sliced with a machete just from a blood draw - ridiculous, I know!

After all of this hypersensitivty, some of my doctors thought I was just a nervous nelly or a bit of a drama queen, but anyone who knew me before POTS had it's way with me knows that's not the case. I used to donate blood regularly because I am Type O- (the universal donor that anyone can take) and that I was more of a rough and tumble tomboy than a drama queen - usually fearless in the face of bodily injury (drove 3 hours in a snowstorm with a mangled arm bone after a snowboadring wipe out, and I never shed a tear, maybe just a few F bombs because I was mad about ruining my ski season with a cast).

After the Cleveland blood test showed such low potassium levels, my family doctor started giving me a daily oral potassium supplement, and now my levels are back to the normal range. I noticed that my heightened sense of smell and taste have gove back to normal recently, and my startle response isn't as bad as it used to be, but it's still a little high (grrrrrr-maybe I need a larger dose of potassium?).

So I saw a new neuro doctor today and happened to mention my non-repsonsiveess to Lidocaine in response to his question about having any weird symptoms. He was very interested in this weird little fact, and started doing research on the internet as I was going over my other records with him. He kept going back to the Lidocaine issue, which I really thought was odd, but hey, at least he wasn't ignoring my weird symptoms like so many other doctors have. So sure enough, after about five minutes he pulls up this article on Hypokalemia Sensory Overstimulation and tells me that some people with low potassium don't respond to "caine" drugs like Lidocaine and Novocaine, because those drugs work on potassium channels. He says sometimes if you take a potassium dose before getting the Lidocaine shot, it will work properly. OMG!  I literally wanted to give this man a hug, but I just said thank you about 1000 times before leaving the office.

I am supposed to go back to Cleveland and have that stomach biopsy under anesthesia next week. I am going to get them to check my potassium the day of the surgery and if it's low, correct it, and then try the Lidocaine before they knock me out. So much better to NOT have anesthesia, because that seems to trigger a 1-2 week flare up of my POTS symptoms every time.

I want to see if there is a reason I have low potassium, since I shouldn't because I'm eating about 3000 calories a day of super healthy foods.  There are some genetic causes of low potassium or 'channelopathies' that cause your potassium channels to be abnormal.  When I return from Cleveland, the new doc is going to try to get to the bottom of the low potassium levels.

Stay tuned to see how the biopsy goes at Cleveland next week... will a potassium pill make the Lidocaine work, or will I end up sick for 2 weeks from anesthesia?


  1. Let me know what you find. I've been working with a neurologist to figure out my hypersenstivities, but after reading your post I wonder if that explains why I have had so many "local" procedures not work. They docs are frustrated and I"m traumatized. I am reported to have had kicked the surgeon and his assistant, opps. Curious about the "Caine" drugs, will just the local ones not work? What about regional blocks? Those seem to have worked but I had atypical symptoms as they wore off.

  2. Just wanted to post an update here.... I had a lip biopsy under anesthesia, but when I woke up after the procedure, my lip was still totally numb, which means the lidocaine was working properly. Yay!

    Since then, I have been given a Provocaine cream when they insert the needle into my chest port. This slightly numbs the area so the needle doesn't hurt so much.

    So long as I have good potassium levels, the "caine" numbing drugs seem to work. Thank goodness!

  3. OK, so I stumbled across this as the cause of all my childhood trauma. For all of my life, Drs and dentists have not believed me or any of my siblings, parents, children...,about the ineffectiveness of Novacain. This condition is very real and has finally been acknowledged in the dental community to some extent. It will be a great relief when the medical community catches up with the folks that care for my teeth. Hypokalemia Sensory Overstimulation is generally caused by mutations in the ion channel genes. After sweets, starches or during the resting period after excercise, potasium is drawn out of the blood serum and into the tissues leaving the serum lacking the potassium needed to help the "caine" family of drugs function as designed. The interesting finding is that this is actually a form of ADHD. When managed with diet, potassium supplementation and awareness of the effect of exercise, people affected with this started to notice a significant and dramatic increase in the ability to focus. This effect occurs about 20 minutes after oral dosing and is descibed "as if a shade had been pulled down". All this time I have been sending my boy out to burn off energy so he could settle down and focus only to now find out that I was aggravating his condition.

    I would suggest reviewing a paper by Michael M. Segal, MD written for the Journal of Child Neurology, Vol. 22 #12 dated December 2007.

  4. There are other anesthetics than the caine family. I have to use them since I am Lidocaine Insensitive. I have Hypokalemic Periodic Paralysis and Sensory Processing Disorder. My senses are all messed up, but they are worse the lower my Potassium is.

  5. I am also lidocaine-insensitive, as is my daughter -- it's apparently fairly common in EDS patients, but rare in the rest of the population. (We also both have POTS.)

    We've been working on a survey of which -caine-family drugs work on us, and so far we've had pretty good luck with Marcaine, Carbocaine, Benzocaine, and Septocaine. Lidocaine has no response at all, and we're not sure about Novocaine, since my dentist doesn't use it.

    Now I'm curious about our potassium levels . . . I will try to get them checked at my next blood draw!

    I find it interesting that, for you, this was an acquired condition -- we probably have the mutated potassium channels, because lidocaine has NEVER worked on me since I was a child -- and I had a LOT of procedures done under "local" anesthesia, and got a reputation as a crybaby/drama queen because I kept insisting that I could feel things like a scalpel cutting into me . . .

    . . . turns out I'm actually tough as nails, because I was able to SIT THROUGH multiple un-anesthetized minor surgeries, heh.

    I'm really surprised that the Cleveland Clinic didn't have other anesthetics on hand to try -- most surgery rooms at least have Marcaine/Carbocaine.

    Glad you finally got to the root of your problem, and I hope potassium supplementation continues to work for you! :)

    Thanks for writing this blog (I was a legal secretary for 11 years, I appreciated the part about having your paperwork together!), because it's really helpful -- I'm trying to find some medical-bill-paying/insurance-subsidy help for my daughter (who is 20, and neither of us is insurable unless we keep paying $1250/mo for COBRA), and came across your site.