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Friday, July 6, 2018

I Get No Kick from Sham Pain

stilton’s place, stilton, political, humor, conservative, cartoons, jokes, hope n’ change, medicare, seizures, PNES, bullshit, elaine dance
Shaken, not cured.
Owing to post-holiday sloth, we're skipping politics today and giving you what will hopefully be the last update in the ongoing adventure of punching ourselves in the face in the course of having multiple (sometimes 50 or more) seizures each night.

Flailing, flailing, over the bounding main!
After weeks of nervous waiting and several annoying tests (including having our head wired up to a mobile EEG recorder for 48 hours) we finally got the neurologist's final diagnosis on Tuesday:

"You're having seizures, but the EEG didn't show anything so it's not epilepsy. Goodbye!"

"Wait, wait! How can that be?"
"Well, you don't have a brain tumor and you don't show unusual EEG activity, so you're just having seizures. Pseudo-seizures, actually. Goodbye!!"

Pseudo-seizures, we've since learned, is an archaic and (theoretically) disused diagnostic term owing to the fact that A) it's inaccurate (it suggests the seizures aren't real - but they are), and B) that it's insulting to the patient...essentially blaming them for having a condition which neurologists don't understand and, therefore, can't make any money out of trying to cure.

The more proper term for what we've got is PNES (which would be a lot funnier if it were pronounced "penis" and we could declare ourself to be the 2018 PNES poster boy). Boringly, it actually stands for Psychogenic Nonepileptic Seizures.

And "Psychogenic" gives you a big hint about how medical science views this unusual and violent phenomenon and its close (albeit still hypothetical) relationship to having an overabundance of night-flying leather-winged mammals in your belfry.

 "You might get relief by seeking extensive psychotherapy," the neurologist hinted while hiding all the sharp objects in the exam room.

"Try relaxing more," she said while backing towards the door. "Listen to music. Learn to paint. Take up gardening!"

You know, pretty much the same advice they gave Lou Gehrig before things went south on him.

Before we could ask another question, our neurologist had fled the room with enough speed you'd think we'd actually flashed our PNES at her.

Fortunately, the intensity of our nightly seizure activity tends to run in cycles, and we're currently enjoying a nice run of some pretty calm nights (anything less than 10 seizures is considered a wobbly walk in the park). Our days are somewhat less calm, because that's when we discover atrocities like the $8,500 bill for questionable services leading to a non-diagnosis.

Theoretically, Medicare will rip that money from the hands of my fellow taxpayers (thanks, guys and gals!) but it's another example of how getting the government involved causes prices to skyrocket WAY beyond what market forces would have charged for all this. Seriously, we could BUY the damn miniature EEG machine and wear it 24/7 for the rest of our life for less than what they're charging for a 2-day rental!

And don't tell us that we wouldn't be able to read the results. Ha! Following our brain scan when all this started, we couldn't get a straight answer out of anybody about what the results showed, so we went to Fiverr.com and hired a radiologist in Chile to review our scans (actual price, $35 including a $10 "rush fee.") He assured us that we had no brain tumors, lesions, or aneurysms, and just a little bit of brain atrophy "which is about normal for someone of your age." Especially if they lived through 8 freaking years of Obama.

Anyway, the good news is that this may all just go away on its own (there's genuinely no need for anyone to worry) and it's unlikely to do any damage other than disrupting some sleep. To that end, we just placed an Amazon order for a 25-pound weighted blanket which is said to not only help keep people calm, but also helps keep arms and legs from escaping their confines at night, sneaking out the window, and joining violent street gangs.

Additionally, we will be redoubling our stress-fighting activities, increasing both our daily meditation sessions ("Think of a calm and relaxing place. A long and sandy beach. You hear only the rush of waves, the cry of a seagull, and the occasional "melp! melp!" from the progressives buried several feet under the warm, nurturing sands..."). We'll also be doubling our intake of Clan MacGregor scotch, which could easily cost us an additional $7.50 a week.

Unhappily, the doctor's order to reduce stress also means that we must sadly withdraw our name from further review for President Trump's Supreme Court nomination. But it was an honor and delusion just to be considered.

It's time for PNES sufferers to come out of the closets!

BONUS: SUPPORT THE CAUSE & OFFEND EVERYONE!

Because we're certifiably not right in the head, we just made this handsome t-shirt available on our Amazon store. Sure to fill your days with exciting and passionately confused comments from complete strangers!

59 comments:

George said...

My PNES is bigger than your PNES!

You're the best Stilt, thank you.
I hope one day your PNES subsides... :)

Sortahwitte said...

My wife, Sioux, made a quilt for our 18 year old granddaughter from old blue jeans. She is ADHD and just loves that quilt. It would be way too heavy for me, but it works for her.

My friend, I don't know how you get any restful sleep. Bless your little tired self.

Regnad Kcin said...

PNES, seriously ? Self abuse is not the answer and, besides, it's a sin. More single malt is the cure for everything. Bon Chance......

Geoff King said...

Not that I would know anything about such a substance, growing up in the extremely innocent seventies, but have you considered Medical Marijuana or CBD oil for treatment of your symptoms? I see it is now legal in your state of Texas.
There has been a lot of success using the Devil's Lettuce in treating standard Epileptic Seizures, and I found this article on a Canadian study which actually mentions PNES:

https://news.lift.co/effects-marijuana-use-reported-patients-canadian-epilepsy-unit/

I too suffer from a sleeping disorder. It is called NBDS, and stands for Neighbors Barking Dog Syndrome. Damn thing often barks all night long with the exact frequency that suggests he actually senses when I start to dose off again after he woke me the last time. The owner, unfortunately, is a police officer that works the night shift, and therefore does not hear the animal at it's worst. I have left a couple of nicely worded notes in his mailbox, to no avail. I would call the cops on him except for the redundancy. Thus far, I have not tried giving the dog some Cannibis.

Mike aka Proof said...

I was a doctor in a play once. I suggest buying Mrs. Jahlsberg a Taser and have her zap you with it at the first sign of a seizure. It may have no beneficial effect on you, but at least the Mrs. will be entertained!

Hopefully you'll find someone competent with a better line of treatment. Good luck.

JC said...

Ya pore bastid. Mine's gotten worse since I've started sleeping solo. I wake up in the morning and find there's no vodka in the freezer. Not my idea, okay? Amy? Amy? I left you some tequila on the shelf. I know you're all dead and shit and I miss you lots but I need the vodka.

Gee M said...

Dr. Sanje Gupta did a comprehensive study...it's on Youtube, titled "Weed"...several types of seizures zapped using either high level CBD or just plain bud.
Whole families packing up everything and moving to Colorado w/epileptic kids to avoid arrest in their states for possession of cannabis.
I disappeared my severe sleep apnea using tiny amounts of cold water hash...60% THC. Really.
69 times an hour my brain didn't tell me to 'breathe'...I put my B-pap mask/machine away almost 3 years ago and I sleep like a happy baby. As a caring friend I recommend some CBD.
PS...no cannabis now for 2+ years. Cure took permanently.

Gee M said...

Geoff King :
I suggest an edible...all dogs eat cookies.

woof!woof! zzzzzzzzzzzzzzzzzzzzzz.

Anonymous said...

I know someone that has REM Sleep Behavior Disorder (RBD). Her brain doesn't paralyze her muscles during REM sleep, so she acts out her dreams. Could you have that? Of course, a t-shirt with "I'm not ashamed of my RBD" just doesn't have the same ring to it...

Sally Jo said...

I've purchased the weighted blankets for family members and they RAVE at the deeper, calmer sleep, less stress and anxiety, and general feeling of refreshing sleep. Between that and the potential use of CBD, I hope it ends the seizures for you. Hang in there!

Bob Lee said...

Hopefully you've moved on from the neighborhood Doc in the Box and sought help at a major medical center with a highly rated neurology department.

Bill said...

Hello,

I was kidnapped by ambulance workers, drugged and taken to a Pittsburgh PA hospital.

I have a copy of the hospital report. It says that they tested me while I was unconscious, and within a few hours, determined that there was nothing wrong with me.

However, they kept me unconscious and strapped to a bed for the next five days, and when I woke up, I got up and left the hospital. They tried to stop me, but when they realized that it would be a fistfight, they let me leave.

Then, they sent over $300,000 in bills to me.

The medical system is way out of control.

Bill Moore

Stilton Jarlsberg said...

@George- It's frightening how many t-shirt designs are possible. "Want to see my PNES?" springs to mind, or for those with my variety of the affliction "My PNES gets busy at night."

I don't think my condition is permanent. I think it was enabled by a medication (Wellbutrin) that I don't take anymore, and that it will just take my brain a while to get back to normal. Well, normal-ish.

@Sortahwitte- I'm looking forward to trying the weighted blanket. I always find it sort of soothing when the dentist drapes that lead apron over me before taking x-rays.

@Regnad Kcin- You just made me think of another t-shirt. If I eventually get past all this, I can proclaim "I Beat My PNES." Regarding scotch, I'm pretty sure that Clan MacGregor isn't single malt. Assuming there's any malt in it.

@Geoff King- I didn't know medicinal marijuana is legal in Texas (apparently fewer than 20 doctors are able to prescribe it). I've seen some remarkable videos of people with epilepsy and Parkinson's benefitting from cannabis. I certainly wouldn't be against trying it in a legal venue, though I'm not curious enough to seek the stuff out in Colorado for a trial run.

@Mike aka Proof- I'd normally say the taser is a terrible idea, but I DO already have a camera set up, and there IS money to be made from viral videos...

@JC- Sorry for your situation. I don't actually get up and drink more when having a "busy" night. Clan MacGregor may be cheap, but I don't want to spill it out of a shaking glass!

@Gee M- Congratulations on the successful treatment of your apnea! I'm still wearing the jet pilot mask every night, along with headphones/MP3 player for my tinnitus, because it's my personal goal to become the world's most stupid looking sleeper. I think if I put on Mickey Mouse gloves and a pair of swim fins, I'll be in the Guinness book of world records.

@Anonymous- Oddly, I'm awake (albeit sleepy) when this nonsense is going on, so it's not REM stuff. It does seem to be related to sleep cycles, though. For weeks I took meticulous notes showing exactly when seizures were happening, and the numbers definitely point to something cyclical. At least, the numbers pointed that out to ME - my neurologist couldn't even be bothered to look at my pages of detailed records; "No, no," she said, "We get everything from the EEG."

@Sally Jo- There's an excellent biographical movie of Temple Grandin, the woman with autism who sort of discovered and popularized the use of restrictive devices/garments to reduce agitation. Weighted blankets fall squarely into this area of therapy and I'm looking forward to trying one. Now if I can just find a nice marijuana leaf duvet...

@Bob Lee- I wouldn't say that my treatment to date has been a major medical center with a highly rated neurology department (though such may soon be on my shopping list). My neurologist operates out of a small building with non-airconditioned halls, and shares the space with a "manual medicine" massage place, an herbalist, an acupuncturist, and an "anti-ageing laser center." Such are the choices afforded by Medicare (sure glad I paid into THAT system for half a century!)

Trust me, if this condition doesn't get better on its own, my happy hiney will be off to somewhere more impressive.

David said...

I would try going vegan - slowly. Wean yourself off meat and dairy over the next few weeks and see if you don't start feeling better.

I don't have PNES, but I lost 25 pounds without even exercising and pain in my feet and teeth went away because of improved circulation.

Stilton Jarlsberg said...

@Bill Moore- That's a terrible story! What was the initial problem - PNES or another seizure of some kind? Or did the ambulance just slow down when they neared you on the sidewalk, then toss a net over you?

And I'm sorry, but I can't help but wonder if they saw your name and thought it was actually an instruction for the billing department? In any event, did you eventually get free of that godawful bill? Seems a man could have a lot more therapeutic fun with $300,000 over five days in a lot of places...

Liberty Card said...

Maybe it's caused by exposure to agent orange. Ever been to Viet Nam, or splashed weed killer on your plants?

John the Econ said...

So their only answer was that you seek out "extensive psychotherapy"?

Brilliant! There's your future of health care right there. Think of all the money that can be saved on actual tests and diagnostics by just sending people for "extensive psychotherapy"? Of course, this will be a boon to big psychotherapy, but there are so many advantages to that:

o Everything is subjective, unverifiable, and will require more "extensive psychotherapy".

o You will be in even a lesser position to question the diagnostic, since you are both not an "expert" and are obviously nuts anyway because you need "extensive psychotherapy".

o Which means you will need more "extensive psychotherapy".

o Which will end up being even more expensive than the $8,500 diagnostic that found nothing in the first place.

o The legions of those practicing "extensive psychotherapy" are almost exclusively Democrats versus the evil corporations that made all those expensive machines that found nothing. Ultimately, your problem will be associated with your support for Trump.

o No need to worry about a retirement home. They've already picked out a nice padded cell for you, to be funded by Alexandria Ocasio-Cortez's universal health care plan.

So you can forgive me for not having PNES envy.

Emmentaler Limburger said...

"it will just take my brain a while to get back to normal Normal? What's wrong with the way it was before this started? I mean: don't do anything DRASTIC!

(I really hate these new captchas. The image quality sucks, you can't always tell what they're after, and they're never-ending... I know it's blogger and not you....but I still hate 'em.)

Bruce Bleu said...

"Sham pain"? Were you in a hospital or the Punatentiary?
(You KNOW I love it!)

John Canfield said...

"..Then, they sent over $300,000 in bills to me.

The medical system is way out of control.

Bill Moore.."

They must have thought your name was really Bill More.

Alfonso Bedoya said...

Stilton: My daughter has a PhD in Neuroscience and has been a researcher for about 20 years. She and her kids visit us tomorrow. I'll throw the PNES "diagnosis" at her and will report back. PNES sounds as if the docs can't provide an answer. Assuredly, for every condition, there is a cause, and it's absurd that the only diagnosis that can be provided is a "non-diagnosis."

I'll peruse the internet for conditions that offer seizure activity and send you a list of possibilities, even though you have probably already done this. Chronic seizure activity is just not normal, and a little detective work is in order.

great Unknown said...

Whether or not you're ashamed of it, it can't hurt to try some Viagra

Stilton Jarlsberg said...

@Liberty Card- I haven't been exposed to any toxic chemicals. Unless you count the cancer-inducing poison cloud we lived in for several months during remodeling.

@John the Econ- Great points. The neurologist went straight to the (entirely untested and unproven) theory that PNES is caused by psychological trauma of some kind, which is magically transformed into physical manifestations by something which apparently isn't your brain. The fact that I was singularly relaxed when this started happening didn't phase her. She was so sure that I must have an oozing psychic wound that I had to dig deep to recall a troublesome time in the past. "Okay," she says helpfully, "don't think about that again. And try yoga."

And bonus points to you for the PNES envy joke. If it becomes a t-shirt, I'll cut you in on the profits.

@Emmentaler Limburger- Yeah, I think "normal" is too high a bar for me to shoot for. And just because you mentioned it, I'm going to try turning off the CAPTCHA system for awhile. Don't tell the trolls and spammers!


@Bruce Bleu- I haven't been to the punatentiary, but I'm no stranger to bars.

@John Canfield- I think before my next hospital visit I'm going to legally change my name to "No Charge."

@Alfonso Bedoya- I'll appreciate any extra insight, though again let me be clear that things have been getting better over the past few days. I've spent quite a bit of time online trying to figure this out, and it doesn't seem to fit anything I can find other than PNES. But PNES isn't so much a thing as a not-thing: "You've got not-epilepsy!"

Even if the condition is largely harmless (outside of disrupting lives) you'd think SOMEone would want to find some answers about it. Why does mine only happen at night? How does it relate to sleep cycles? Is the activity being directed by my brain or not? If no volition is involved, then who the hell is calling the shots? So far, the Internet offers no answers...and a lot of the psychiatrists who work with PNES patients also dope them up to some degree, muddying cause-and-effect.

And when you say "a little detective work" is in order, it made me think of Peter Falk, who was my favorite little detective.

@great Unknown- Well, that would certainly add a new element to my night vision videos...

American Cowboy said...

@ John The Econ said, "The legions of those practicing "extensive psychotherapy" are almost exclusively Democrats..."

And that is what should give pause to anyone seeking out "extensive psychotherapy" these days. That treatment has the potential to earn one the designation as mentally "defective". ATF form 4473 (Firearms transaction) defines that as, "A determination by a...lawful authority that a person, as a result of...or mental illness..." Am I paranoid where government definitions are involved? Damned right! Would the "powers-that-be", if ever the leftists currently protesting everything under the sun came back in power, ever use the broadest definitions concerning treatment choices to strip U.S. of our constitutional rights? I believe they would. Just my 2¢.

Rob said...

For the guy who has the dog problem, the first comment on this blog does have an answer for that. https://snarkolepsy.blogspot.com/2018/07/so-neighbors-woke-me-up-with-their.html

The first comment here explains it better.
https://snarkolepsy.blogspot.com/2018/07/ive-got-nothing-for-you.html


Good luck with your unknown Mr Stilton!

Alfonso Bedoya said...

Stilton: My daughter was previously involved with research into sleep disorders. I googled PNES and found what appears to be a well-written article. Don't know if it applies specifically to your problem, but here it is:

https://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures

John the Econ said...

"The neurologist went straight to the (entirely untested and unproven) theory that PNES is caused by psychological trauma of some kind..."

Remember the whole "repressed memory" fad that was cutting edge psychotherapy back in the '80s and '90s? Countless innocent lives were trashed because emotionally compromised people were convinced by "professionals" that all their current shortcomings and unhappiness in life were due to bad things that others had done to them years before and that they had "repressed" the bad memories in order to survive. With seeds planted by "the professionals", the patient was free to imagine all kinds of horrors that had supposedly long since been perpetrated upon them by family, friends and associates. (It really helped if you already held a grudge against somebody) For a time it was a staple of daytime Jerry Springer-level television.

By the mid-'90s, this had largely been debunked. But some bad ideas never fully die, and seem to come back in 18-year cycles.

In fact, today's Progressivism is largely built upon the concept, except instead of imaginary evils having been perpetrated upon individuals, it's now ancient evils against whole classes of people. You no longer need to have actually been acted upon; The the fact that something happened at some point in the past to someone in your chosen identity groups makes you too a psychological victim. This is also one of the reasons that Progressives are working diligently to turn normalcy into pathology. There's no room for psychologically healthy people in the brave new world!

But seriously: I generally hesitate to give advice on other people's health issues because it's really none of my business and I generally have more respect and faith in you (if not your health professional) to figure out your own path to wellness than I have in any advice I might give, but I'm going to second @Geoff King's suggestion of CBD. I wouldn't recommend smoking, but would suggest consuming in edible form. (capsules are easiest) Quite frankly, the secondary health effects of marijuana extracts are near non-existent, and certainly less invasive to your neurological well-being than Wellbutrin ever was.

Will there be PNES hats?

Mike Porter said...

General PNES rundown: A specific traumatic event, such as physical or sexual abuse, incest, divorce, death of a loved one, or other great loss or sudden change.

I'm willing to bet it's due to a combination of the above... eight plus years of death of a loved one, which is a great loss (which, BTW, felt verily much like sexual abuse, divorce AND incest, as if there were some distinction), combined with the sudden change of Donald J. Trump. As the cereal box always said, allow six to eight weeks for delivery. I mean, counting all of those box-tops is no picknick, and the cure is coming all the way from Kankakee Illinois, after all.

Anonymous said...

Hey Stilton, I can relate to your circumstance. I have a problem with early stages of neuropathy, a problem with my balance and my speech has been affected. I have been through my PC Dr, a Neurologist and a Nuero-surgeon. Multiple blood tests (including one sent from AZ to MD to check for myosenius-gravis (sp?, MRI's and EEG's. Even a speech therapist. All blood tests and other tests are "normal". No one can advise me of the next step. foruntaluy, Medicare and Tri-care (retired Air Force) have covered my bills . I wish you well and if you get an answer, tell us all. it may help me. Thanks, G. Foulke, Sun City AZ

John the Econ said...

@American Cowboy, I wholeheartedly agree. I do believe that there is an unholy alliance between the physiological community and the Progressive political agenda, and they are more than comfortable using their professional credentials to forward that agenda. (Although it has backfired at times)

There's no question that by defining everyone they disagree with, particularly conservatives and gun owners as mentally defective is a very convenient way achieving their goals without having to mess with their historically problematic.

That's what we're up against. I can't remember off hand who first said this, but I think this is a good example of it as a truism: Conservatives think Progressives are wrong. Progressives think conservatives are evil. And as such, they feel justified and free to use whatever tactics they see as necessary to forward their agenda.

M. Mitchell Marmel said...

CAMMONT TYPE LSUGHING TOO HARD AT SHIRT AD

M. Mitchell Marmel said...

@John the Econ:

"And as such, they feel justified and free to use whatever tactics they see as necessary to forward their agenda."

Unfortunately, conservatives are rapidly approaching this point as well. Unfortunately for the progressives, conservatives will, albeit reluctantly, use Second Amendment tools (as Stilton puts it)...

Walter L Stafford said...

A suggestion: I'm certainly no MD, yet some conditions associated with the disease we acquire at birth...AGE. may contribute. Ask your physician for a prescript of Primidone or Sertraline.
Some physicians just practice while others are somewhat "edumacated." Also, go to Drugs.com and read the info relating to this two medications.

NVRick said...

So, the experts have determined that your PNES is in your head?
"There once was a man from Nantucket..."

Gigi said...

Stilt, Wellbutrin created this continual buzzing in my ears. Like I am on a permanent picnic in the woods. Went off Wellbutrin quickly but the bzzzzzzzzz is still there. Looked it up and sure enough that is a side-effect. Sigh. I love all the medical self help in this column. Better than any doctor!

Pete (Detroit) said...

Elaine Benis, by the way, just to ad to the joke.
You might want to talk to the accupuncturist - re-balancing basic energy flows is kinda what they do. Yes, some put them in the same category as blood letting and leeches, but others swear by them. Your Mileage May Vary.
College roomie had been self treating his free-floating anxiety and (self diagnosed, dunno if he ever got anything 'official') PTSD w/ weed for decades. When he moved to Canada (coupla years ago) he could get a medical scrip and is able to blend the CBD / THC content, I think he gets best relief from a 70/30 blend... (he *does* still enjoy the buzz) Point being, as others have noted above, CBD is well documented as beneficial, and is (supposedly) widely available as it has zero "buzz" effect...

Sandy Link said...

I believe the weighted blanket may act like swaddling a baby to calm it down. Perhaps a second opinion is in order. I would see another specialist just to make sure the diagnosis is correct. I had a son who experienced "night terrors" and it scared the crap out of me. Now this was before the Internet so his pediatrician had to look it up in an actual medical book (go figure) because he had no clue what it was. My point being, this could be something entirely different than what your doctor diagnosed. Not sure the Scotch is helping, though. Maybe a little weed before bedtime???

CC said...

So idiopathic, then?

Stilton Jarlsberg said...

@American Cowboy- I completely agree. How many of my rights would/will be compromised if I'm given a diagnosis of some kind of mental illness? Then again, I've been on Prozac for years (and loving it) so many on the Left would probably already say I shouldn't be allowed to use a firearm. Or a keyboard.

@Rob- Wow, that's a fascinating use of technology! Similar techniques are used to drive young loiterers away from stores using high-pitched annoying tones that almost no one over 30 can hear (honest, I'm not making that up).

@Alfonso Bedoya- That's an excellent article- probably the best I've found. Not that it has many answers, but at least it allows the sufferers to maintain a little self-respect.

@John the Econ- "Repressed memories" were hugely popular because by definition the "victims" couldn't remember the alleged incidents that scarred them so. A lot of families ruined, I'm sure. And you're absolutely right that the same specious logic informs much of the Progressive mindset.

Interesting that so many folks here are suggesting CBD (or the free range equivalent). I take it all perfectly seriously and may look into whatever extracts are legally available. I'm not about to try buying anything illicit because, about 45 years ago, I say the movie "Midnight Express" and have harbored a fear of being thrown into a Turkish prison for drug offenses ever since.

@Mike Porter- Yeah, that's pretty much the laundry list presented, and I'm beyond happy to say that MOST of those things have never happened, and none has happened recently. So I'm skeptical of the whole thing. Then again, I did take the Obama years pretty hard. I've joked here before that I aged in dog years during that time...only I was only barely joking.

@G. Foulke- I'm very sorry to hear about your medical mystery and sincerely hope that you either A) get well or B) get a diagnosis that can get you well. One thing I liked about my family doctor (now deceased, damn it) is that he was willing to admit what he - and the medical profession - didn't know. Turns out it's a lot.

@John the Econ- Exactly right. I'm sick of Progressives branding me (and folks like me) as evil and/or mentally impaired. As you say, either definition allows them to dismiss me - or even harm me - without a ripple of conscience.

@M. Mitchell Marmel- I'm kind of surprising that Amazon let me post that shirt. On the other hand, it's a perfectly valid cause. Apparently PNES isn't all that rare, but there aren't many PNES products on Amazon. I'm damn sure that mine is the only t-shirt!

And I agree with the sad reality that too many people on BOTH sides are warming to the idea of active and possibly violent confrontation rather than resolving our differences logically and peacefully. This scares me. A lot.

@Walter L Stafford- I'll look up those drugs and see what they say. Thanks!

@NVRick- You wouldn't think you could have PNES in your head without an extremely flexible back, right?

@Gigi- I'm very sorry for what's going on in your ears. I, too, have tinnitus - high pitched squeals which may be similar to your "crickets." I survive by using masking sounds (fans, etc) at all times. All times. I can't say that I like the idea that Wellbutrin may make permanent changes, either. I'm very much hoping that's not the case here.

On the positive side, there IS a lot of good advice being dished out here today - not to mention all the camaraderie which is perhaps the best tonic of all.

REM1875 said...

Doc good luck....it's a frustrating deal for the Dr who can't diagnose you also. Seeing real patients vs those there to get UNEARNED SSD wears em out. (not talking about those with real conditions who usually go through hell to get their SSD)
By the time they get to real patients who simply want to know what the hell is wrong with them their bedside manner ( often in short supply to begin with in the medical field) is worn thin....
Not that they don't want to help .....but their interactions with actual live humans are often ......ahh..... not their strong suit ....to say the least .....
20 some years assisting Dr in the military medical field (including time as an EEG tech) has left me often in the middle between Dr and patient.....
After a 1/2 hour with the Dr it was up to me to put into words they could understand, things like...
"ya take the bright shiny thing called a suppository and TEAR THE TINFOIL OFF and SHOVE IT UP YOU ASS......."
Something that the half hour with the Dr could not make them understand ......

and it goes down hill from there.......

Don't give up ...don't loose hope ........get relief ....

Andrew said...

Great shirt. May have to break my 'no message shirt' rule.

And you could follow up with "RBD for your pleasure."

Stilton Jarlsberg said...

@Pete (Detroit)- I know some people who've had good results from acupuncture. I'm not actually averse to the idea, though at present I'm not convinced that I need it. I don't accept the whole idea that I'm over-stressed and that it's giving me jazz hands. I'll look into the CBD thing, though. I have a family member who swears by the therapeutic properties of the leafier form.

@Sandy Link- I'll definitely seek out a second opinion if this nonsense doesn't go away, though for the last few days the trend has been good. I think taking Wellbutrin kicked it off, and eventually it will just go away. (I pause briefly to knock on wood). And I hope your son no longer has night terrors - that would be tough on the whole family.

@CC- Exactly! And I'm hoping you're referring to the Johnny Optimism cartoon I did a couple of weeks ago with this very situation in mind...

Doctor: When doctors don't know something, they say "idiopathic."
Johnny: Why?
Doctor: Idiopathic.

@REM1875- I appreciate the good words and I'm nowhere near being without hope. Heck, look at the fun I've had here today with my friends! Assuming that things get no worse (and I DO assume that) I can keep laughing until this goes away.

But you make a good point about the fakers who clutter doctor's offices hoping to get benefits. I don't know if my neurologist considers ME a faker, but she certainly lost interest in me in a hurry. But what the heck would be my benefit in faking? Not that it isn't FUN taking night videos of thrashing around every night, but I don't need or want any financial benefits, I'm not looking to sue anyone, and I don't have a job to avoid. I'd just sort of like to stop kicking my legs like a Radio City Rockette, and stop occasionally using my face as a punching bag. Sheesh.

Doug M said...

Dang, Stilton, that's a shame.
Well, not "you should be ashamed" but still…
Seizures sound bad, but I suffer 8-10 hours of total loss of consciousness.
My only recollection for any given night is getting up to pee.
That's it, 8-10 hours of my life totally dedicated to peeing.
Nature's cruel that way.

Randy S. said...

See if you can get one of the genius(s)to give you some primidone. Small dose at night should do it.

Dan said...

Geez, Stilt.
But I did enjoy your calypso video.

After looking at it, I gotta say that you may have seizures, but all the leg movement and so forth should keep your circulation in good shape. And lessen your chances of DVT.

mamafrog said...

Gee Stiltie, if you're going to "kick like a Rockette" you really need to consider shaving and getting appropriate heels for the routines (your wife might appreciate that show), and definitely get some support hose since at your age they're a good idea to keep the legs in shape. Actually, I hope you are getting better and it's not just temporary. It's always nice when a weirdly idiopathic condition finally goes away on it's own since you won't have to visit the "idiopathic neurologist anymore. I really dread starting Medicare next year, but I really need it so...say la vee.

R. Davenport (the Mad Monk) said...

Stilton,
My suggestion: 4oz of (true) Mead [an adult beverage made from Honey] at bedtime to relax all those muscle groups. True Mead will be about 14 - 16% ABV and has good properties form the honey base. Avoid 'honey wine' not the same. Have a neighbor started taking it before bed and didn't need pain meds for all his joint replacement parts any more. YMMV.

RedHatty said...

On the CBD recommendation, I concur. I use it regularly to help my non-specific seizure disorder. I live in a state where medical cannabis has just rolled out, but I've been using Hemp derived CBD for years - completely legally. I strongly recommend you check out what www.bluebird-botanicals.com have to offer. Completely legal in all 50 states.

Using this helped me to reduce the amount of big pharma medication I have to put into my body & has now allowed me to go a full year (for 3+) with less than 5 seizures a year.

I didn't believe it would work in the beginning, now I won't go without it.

Unknown said...

Thank you for letting us laugh at your misery. This alone ought to be enough to confer sainthood. Sadly my wife won't let me order a shirt and since we still occasionally do our own nightly calisthenics that I would miss I'm going to listen this time.

If you get bored you might try your video to Yakety Sax. It makes everything funny.

https://www.youtube.com/watch?v=v1bJnd4Yy7s

I'm a bad bad man.

Thanks for this place it is sometimes the highlight of my day.

Stilton Jarlsberg said...

@Doug M- Sad to hear about your nightmarish condition. I wouldn't dream of making a joke about it. On the bladder-half-full side, at least you're getting out of bed to pee.

@Randy S- I'll check it out.

@Dan- I like your attitude! I have to admit that my calves have never looked better. Maybe I should release a "Seizures of Steel" workout video?

@mamafrog- One night I wore sock puppets on my feet for the video, but I decided it was a bad idea as doctors might subsequently think I wasn't treating this whole thing seriously. And good luck when you join Medicare. I've been on it for about a year and still have no idea how it works. Or IF it works, for that matter.

@R. Davenport (the Mad Monk)- Interesting! I'll sniff around a little to see if I can find such (per your specifications). I'm assuming that the same benefits would not accrue from simply using a bear-shaped squirter to add honey to my Clan MacGregor. Or would it...?

@RedHatty- Since this comment started, I've researched CBD because I'd like to try it. But the whole "legality" thing is a bit shaky in Texas. Apparently it's "legal" to possess only with some considerable qualifications: you have to be diagnosed as having "intractable epilepsy" (I don't) which has failed to respond to two medications. You need a doctor to prescribe it (there are 16 such doctors in all of Texas) and a second doctor to agree with the first.

Currently, it sounds like I could order CBD oil by mail and nobody would much care...probably. On the other hand, being a medium high-profile troublemaker I don't want to have my house raided, or find out that using the mail to ship CBD is a felony, or even have my name on a mailing list which can be traced. Dang it. I'll continue my research, though - including the site you mentioned. Thanks!

@Unknown- No, no - you're not laughing at my misery, you're laughing with me. There's a difference! And how the heck did I miss using Yakety Sax in a video? It's just gone to the top of my list!

John the Econ said...

I can appreciate your paranoia. Medical marijuana is legal in our state, and Mrs. Econ is currently consuming edible CBD for a health issue. It has been very effective with no quantifiable after effects. She's been pushing me to get a card for an occasional back issue that was the result of getting rear-ended by a bunch of meth heads in a hit-and-run episode.
Unfortunately, I have some Federal certifications that I am concerned about and really don't want to give them any excuse what-so-ever to mess with me. And as aforementioned above, it's just a matter of time before that is used as an excuse to seize my guns.

Such is the insanity of our times: Today in San Francisco, you can shoot up heroin on the street and they authorities will leave you alone. But try to snort some coke with a plastic straw and you may end up in the slammer. Not for the coke mind you, but for the straw!

Anonymous said...

Hopefully they ruled out REM sleep behavior disorder. Those patients punch themselves in the face (or punch their bedmate). These aren't seizures but failure of the paralysis mechanism that is there to stop you from acting out your dreams. The EEG should have shown if you were in REM during the spells.

Stilton Jarlsberg said...

@John the Econ- It's all craziness, but I'm glad Mrs. Econ is getting some good effects. There's no way I'm running the risk here in Texas, as the law makes it abundantly clear that CBD isn't legal for me.

@Anonymous- It's not REM sleep disorder because I wake up and am conscious during the attacks. I'm pretty sure that it's related to my sleep cycles somehow, but the neurologist wouldn't look at my data and didn't attempt to explain PNES or any details at all about why it only happens to me at night. The more I think about it, the more resentful I become of the way I was simply brushed off and deserted. Not really a great value for the taxpayers' $8,500.

valvenator said...

Ive become quite resentful too. It seems after hundreds of years one thing hasn't changed. They still use leeches, just not the bloodsucking kind. Now they bleed your life savings.
It's the very thing that insurance was supposed to protect us from.

Emmentaler Limburger said...

General PNES rundown: A specific traumatic event, such as physical or sexual abuse, incest, divorce, death of a loved one, or other great loss or sudden change.

And there it is. Your PNES is a delayed reaction to the trauma of....


....that @#$%ing remodel!

Gee M said...

It's the Russians, I tell you!

ChrissytheHyphenated said...

I hope you don't mind me butting in here with advice, but these two OTC supplements could potentially reduce or even eliminate your seizures. I mean ... what have you got to lose besides $100 or so

I don't have seizures, but I do have a couple dozen other "there's nothing wrong with you" things wrong with me. I've gotten a tremendous amount of help from taking ionic liquid magnesium. Dr. Dean says here that ionic magnesium can be helpful for seizures as well. (Magnesium is used by every cell in the body. The ionic liquid form allows you to take very large doses without getting diarrhea.) I strongly recommend Dr. Dean's book, The Magnesium Miracle, which is very readable and only $14 at Amazon.

https://drcarolyndean.com/2011/07/settling-seizures/

This $28 bottle is enough for six weeks at the RDA of 400 mg/day (1 cap full). Dr. Dean recommends 700 mg for best health in adults and more if you're overcoming a deficiency. Basically, she says to start out small (100 mg/day) and slowly build up the dose until you hit your target dose, feel better, or get diarrhea. Diarrhea may mean the magnesium has triggered a detox cycle. Or it can mean you're getting more magnesium than you need. FYI: Doctors rarely test magnesium and, even when they do, the test isn't accurate for whole body magnesium status. The heart needs magnesium and keeping the heart pumping is job #1, so the body will drain cells, bones, and teeth to keep that blood level up. Dr. Dean talks about the test in the book and also explains why magnesium is so important, so often overlooked by MDs, and so very often deficient in Americans.

https://www.goodstate.com/ionic-minerals/single-ionic-minerals/ionic-magnesium/mag16oz.html

This article suggests that just 10 mg per day of CBD oil can be effective in controlling seizures. I just started taking CBD myself this week for chronic pain and inflammation. I decided on Elixinol brand, because it was the only one that showed up on two out of the three "best brands" lists I found on the 'net. One of these sites was Consumer Lab which tested a bunch of the top brands for purity and gave Elixinol two thumbs up. I am using 10 mg per day under the tongue. It doesn't taste great, just mildly unpleasant. It's not cheap at $1/10 mg, but if it helps with my chronic pain so I can sleep and walk better, I'll be delighted.

https://www.webmd.com/epilepsy/news/20180516/low-dose-of-cbd-oil-eases-epilepsy-seizures#1

A one month supply of CBD oil is $30 @ https://elixinol.com/

Stilton Jarlsberg said...

@valvenator- I don't know how much of that $8500 bill I'll be on the hook for, but even if ALL of it goes to the taxpayers I'll be honked off. That's a preposterous figure and one that wouldn't stand in a free marketplace. If anyone in the government really wants affordable healthcare, all they need to do is get out of the healthcare business and let competition bring the prices down. Case in point: I get many of my prescriptions for $3 a month. Is that because of a great government policy or excellent insurance? NO - that's simply the price at the register since virtually all pharmacies are trying to bring people in with the lowest prices.

Ironically, I now pay a lot more for my prescriptions because under Medicare, I also have to pay for "prescription insurance" that is higher than all my meds combined.

@Emmentaler Limburger- By George, I think you've got it! I've still got remodeling PTSD!

@Gee M- Perhaps I published one Putin joke too many...?

@ChrissytheHyphenated- Many thanks for all the information. I'm already taking a magnesium supplement, but not the ionic liquid you're describing. I'll look into it.

And as I've mentioned above, I'd definitely try CBD oil if it was legal in my state, but it isn't except for "intractable epilepsy" that fails to respond to two other meds, AND you get two doctors to vouch for your need for the CBD. Since I don't even have epilepsy, I'm hosed right out of the gate.

Oh sure, I could still order it...but as you can guess, a guy who's been blogging about governmental mischief for over a decade doesn't really want to expose himself to unnecessary risk.

Unknown said...

My father had ALS (amyotrophic lateral sclerosis) for 3 years His first symptoms were weakness in his hands and losing his balance which led to stumbling and falling. He never lost the ability to swallow or breathe. His one hand, then his legs, were affected first; then his arms. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of his primary physician, he would have died . There has been little if any progress in finding a cure or reliable treatment. So this year his primary physician suggested we started him on Natural Herbal Gardens ALS Herbal mixture which eased his anxiety a bit,We ordered their ALS herbal treatment after reading alot of positive reviews, i am happy to report this ALS herbal treatment reversed my dad condition. His quality of life has greatly improved and every one of his symptoms including difficulty in walking and slurred speech are gone. Their official web site is ww w. naturalherbalgardens. c om He will be 74 soon and can now go about his daily activities