Join the Conversation on
681 people
0 stories
40 posts
About Delirium
Explore Our Newsletters
What's New in Delirium
See full photo

Pain in the neck (part 3)

In women it can be hormonal they tell me, disappearing in the mid-fifties, when the menopause cuts in. To me it's an emotional brainstorm, which burns out the computer screen, leaving the sufferer unable to function. Lightning strikes can have the same effect - twitching, memory loss, staring blankly into space, like you're in a trance. Everything speeds up - urination, defecation etc. until the body reaches a climax, whereupon it collapses back down again into stillness and the mind into silence. It's almost like manic-depression but physical not mental sensitisation followed by de-sensitisation. Freezing during the day - boiling in bed at night, like an overnight heating storage system. Bitter taste before an attack, sweet one after - like insulin kicking in. In fact I think the whole of life is like one, gigantic migraine attack youthful discharge, followed by collapse into old age's illness and decay: Inability to keep food down, loss of memory and awareness - dementia as the equivalent state of migraine delirium, where you lose contact with the real, solid world and drift away into serial dreaming, contacting dead others, like you.

When I first took pills that worked, I could feel my body reacting as the chemical imbalances were corrected. Half an hours sleep and I was right as rain but it was only effective with mild attacks because during severe ones I couldn't keep anything down. Taking showers was something else though. I could feel every drop of water on my skin as though it were hail stones, such was the effect of the mould derivative on my nervous system.

When I went to the dentist, he said I suffered from bruxism. What's that I asked, incredulously? 'Teeth grinding - everybody who has migraines, does it.' he assured me.

'Oh?' I responded.

'Yes, it's the suppressed anger' (as if I didn't know!).

He suggested a gum guard like boxers use, in order to stop it. Worn overnight he said, it would stop the teeth crunching and therefore the pressure in the jaw that led to the headache (That was the theory anyway).I tried it once but it was like trying to go to sleep with an apple in your mouth, so I soon dumped it as impractical and uncomfortable.

Before an attack my skin would crawl as though it was brushing up against cobwebs. My shins got so itchy that I'd scratch them until they bled. I'd also get this funny prickling sensation on my left shoulder and a high pitched whistling in my ears. My doctor said it was probably wheat intolerance. What about all the tension in my back and other joints and the only relief I got was by cracking them? Gas, he said. And the rheumatoid arthritis after an episode? None of this is related to the migraine but is a separate issue, according to him. We'll put you on so-and-so, which should soon sort it out (It didn't, anymore than his answers satisfied my curiosity).

I believe as I said earlier, this proves it's some kind of accumulation/ discharge problem, showing up as the hot/ cold difficulty, body tension and relaxation, plus other polar opposite symptoms: This includes the static I'm prone to, when I touch plastic handrails or pull off my jumper, made of synthetic materials (The spark across my nose is shocking, just shocking!).

I tend to drop things after an attack because I'm not aware I'm holding them. The doctor said its possibly nerve damage or blocked blood vessels as a result of the migraine. This and slurred speech, memory loss etc. indicated signs of minor strokes but not to worry (Apparently all these mini-strokes can build up into a major one in later life, which can kill you and this is the real danger with migraines, even if the attacks disappear in your mid-fifties as with most people: Personally I wish I hadn't found this bit out ).

Life is a pain in the neck and then you die, recover, forget all about it, then die again, in an endless cycle of hope and despair. Such is life.

4 reactions
See full photo

A Pain in The Neck (Part 2)

When I'm like this I hate everyone and everything, including myself. As the old joke goes 'I'm not prejudiced - I hate everyone equally.' I just want to die and want everything else to go as well. Lights are too bright, sounds too loud, smells too strong and touch makes my skin crawl - don't mention taste - even water won't stay down. These dead eyes back away from the world in disgust. They don't want to see, let alone look. The curtains are closed, the blinds are down and the eyes shut against a cold, uncaring world. Every system breaks down under pressure (overload): The final straw on the camel's back or the bucking bronco, kicking back against the heavy load and going into defensive mode (protecting the friend within by closing down and shutting the intrusive enemy out). This is probably why all my orifices dry up or block up, after an attack - gunge in my eyes and nostrils, wax in my ears - skin pores blocked with stale sweat and let's not forget the constipation (if only I could) and the thirty minutes straining on the toilet seat. Everything shutting down and trying to shut out, everything else outside.

I slip between dreams and wakefulness, in a delirium of self-loathing. I spit out the odd syllable oh hatred as I twist and turn, in a sweaty melodrama of contempt. Future? What future? As for the present, I don't want to be here and don't mention the past with all its interwoven failures - the parents I let down, the jobs I dumped for no good reason, the women I discarded like empty cigarette packets, the towns I moved away from. I couldn't face any of it. And now here I am again, wallowing in self-pity and spitting at any help offered me, in a mad rage. I don't want your pity, your helping hand - I just want to be left alone to die! (But I don't die and that is the bitter pill I swallow every time). This hell circles me me like a bunch of vultures , each time this mini-death strikes. I smell and look like a corpse because that is what I am. The world's biggest hangover never goes anywhere - it's always there, waiting in the wings for its next curtain call. Still Scarlett, tomorrow is another day!

Today I feel flushed out like a toilet - drained, empty and my breath stinks like an open sewer. Work tomorrow, if I'm lucky - if not another day in bed at least. The reward of sin is death and I've hit the jackpot again! Another bowl of scorn flakes, to set me up for the day. Hi-ho, hi-ho and it's off to work we go! This anger driven obsession gives way to laughing at its absurdity again and the brave face returns. The sad clown gives way to the mad clown, giggling away at nothing; instead of frowning at something as though this speck of dust, this instant in eternity, was a ten ton rock on his chest (or head more like).

Did you know most hospital patients die between three and four in the morning? They call it 'The Death Hour' because of this. I worked out that this is when my migraines start in ernest. Somebody told me that this is because this is the time you run out of energy, nutritionally. I believe this is partially true. It's also when you're most relaxed. When you're awake, your body tenses up naturally, through mental stress and body motion: Move-tense-move (hold in position and let go).

It's like a car going into a garage, to get repaired - you need to decommission the body, to carry out work on it. Take it off the road to deal with wear and tear or the accidents we are all prone to (You can't fix the engine driving along the road, can you?).

One of my biggest insights was when I discovered from a friend that it wasn't the stress that really caused the attack but the relaxation that occurs after, which leads to the body's systems getting flooded, when you let go of the cares of the day. It led to a eureka moment, where stormy weather as a trigger, suddenly made sense. Then I saw a program about mountain sickness and realised it was the same thing too. It told me that mobile decompression chambers were used to treat this condition, in the same way The Bends were fixed in more solid versions of this (pressure problems again). I rushed to my doctor, to ask if the local mountain rescue team had a Gamow Bag I could borrow.

He said 'You're joking of course! I go hillwalking and it's needed for people who can become fatally ill through altitude sickness, not minor headache sufferers.'

'Could I buy one?'

'Oh yes but they are not commercially available to the general public you know?'

'Why not?'

'Ask the government.'

So that was that.

Looking for alternative treatments, I dipped my toes in a sensory deprivation tank.

3 reactions 1 comment
See full photo

A pain in the neck (part 1)

I am thankfully passed all this but I had twenty or more years of migraine (now 72 but was told that by my mid fifties I would lose them. I didn't. Fine if you are a menstruating female but not true of a grumpy old pensioner, trying to write. Mine disappeared in the mid sixties. In light of this here is a story I wrote from that time:-

I've got to get this paperwork finished by tomorrow but all I can hear is this thump, thump, thumping bass above me. I want to get into my head. I 'need' to get into my body, to get this stuff done but no matter where I go in the flat, this incessant noise grabs my attention. I could kill the bloody bastard!

The pills don't work anymore. I've got a splitting headache and I know tomorrow it will have turned into a full blown migraine: Three days in bed, vomiting, sweating like a pig, stuck in delirium...

It starts with tension in the neck. I can sometimes feel a sharp pain where it joins the skull. One day I know this blockage will turn into a stroke that will kill me but there's nothing I can do about it. I tried anger management but left after punching the guy who ran it. He knew how to push my buttons, so I pushed him back. The guy above me is different. I fantasize about taking a sledge hammer to his music centre (Kicking in his door and kicking that thump machine into a million pieces). Any resistance from him and I'd do the same to him. The reality of course is different...We pass in silence or polite greetings. He doesn't care one iota about my feelings, the arrogant sod. It's like being in an abusive relationship. I hate him but my feelings don't touch him. This is a living hell.

I won't let him drive me out of my own flat. Sound smashes your ability to concentrate. It splatters all over the place, so that you become a flat, empty, mindless husk like him. Responsibility is about seeing but he wants to remain blind. Drinking, partying to all hours. Where does he get the money from? How's he even fit for work? Still I never am - mainly because he makes me sick, literally! Why do we have to carry these wasters? Why!? Why!!? Why!!!?

A silent, contemplative society - that would be my dream (A monk to his viking raider). Peace! Peace! Peace! That's all I want! Christ, is that too much to ask?

I'm a workaholic - I admit it but where would this society be without people like us? They'd just let things fall apart or worse still, rip them actively to shreds. They'd rob people, beat them up, threaten and cheat them, just to get their needs met or expect to be spoon fed like the babies they are. They resent the world and everything in it, including themselves. Work is a four letter word in their vocabulary. Honesty is another swear word to them. They'd rape and kill, to get what they wanted but ask politely? No way! They kill cats, grunt obscenely and drive their cars and lives into the ground because they don't really want to be here. Drugs, alcohol, lack of sleep, reckless abandon of all sorts - anything but settle down and develop inner resources, inner knowledge for dealing with the world they find themselves in. They're damaged goods that they helped damage. Self-sabotage motivates them, not thought. They call people like me boring: Shopkeepers, accountants, academics just as they called the first farmers the same because they were the mighty hunters - posturing and pouting, in their antique roles as time passed them by. They see themselves as predators still and we as their prey. And why not? We've got the real power in society, not them. They are the victims of this world - dinosaurs left behind when the rest of humanity caught on, to what we were about. We want to see a different world - they are only happy if they can take their old one with them. They want to convert the new world to their old ways, dragging us down into their hell. We don't conquer the outer world and turn it into replicas of our own lives. we conquer ourselves and our primitive fears, to better appreciate anything new and different we encounter. Still enough about them and our efforts to convert them to a better life, raising their consciousness to our level.

I know an attack is coming on because get this vile taste in my mouth that reflects the mental bitterness I feel inside. My skin feels like it's flea infested. I get severe indigestion because I feel life is hard to swallow. Perversely I also get the munchies, where nothing I eat satisfies this craving inside (Stuffing down my feelings because being sick means no longer being able to control them). Coffee is one of my triggers. I know this from vomiting up a cup I'd drunk half an hour earlier, in a distilled version (no sugar or milk, just the black steaming caffeine).

I reckon the reason migraine is on the increase in this society, is because of the ever increasing pressure on its members. It's like an orgasm or a massive electrical discharge. Things build up to a climax then explode like a volcano. Epilepsy is that way and I think migraines are no different.

It's like trance dance as seen in voodoo and whirling Dervishes too. Continual motion, leading to inevitable collapse of the organism through adrenal fatigue or society through panic attacks par excellence! I believe were just vacuoles sucking in and blowing out experience or electricity generators, accumulating then discharging energy. I believe too this explains ageing as motion between two points and again dementia as chronic delirium or loss of contact with the world, leading to balance problems, loss of appetite and inability to keep food down (The big trip of unconsciousness as opposed to small deaths on the way). All of this fascinates me and why not? My doctor says I'm talking rubbish in his own particular, polite, professional way. I accept his reaction with a pinch of salt. What does he know? He should be on my side of it.

I awake the following morning. Awake, is that what I really am? I feel like death, staggering about the flat like a zombie. It took ages to drag myself out of bed and look in the mirror. Yes that confirms it - I am dead again. That sallow skin, those lifeless eyes - black around the edges, bloodshot within. Tongue out. Yes it's that white flag of surrender again (another overnight snow storm, covering it). Sometimes it's yellow with vile bile and it tastes bitter and ugly like my mood too.

I just want to curl up and die - oh God, here it comes! The wretch throws himself down before the God of the toilet seat and retches. He prays to the Lord of Vomit. 'Please accept this humble offering - yurp!' Oh God, here we go again. Yurp, yurp, yurp! Nothing there but I don't listen to my stomach. Once more with feeling - yurp!'

I sit there for five minutes, leaning back on my heels. Is it over? Is another eruption on its way? Eventually I stumble back to my feet and walk shakily back to my bed. 'I'm ready for my shot, Mr Romero! No, I don't need anymore make up and I remember my lines perfectly. Groan, grimace, stagger isn't it?' I don't need the thump, thump, thump of his music above me anymore - I've got the recording going on in my head already. Sorry no, make that the sound of blood pounding around somewhere in my crunched cranium.

2 reactions
See full photo

My Wife has "Alzheimer's Like" Dementia caused by Strokes

My Beautiful Wifeycritter, Cheri, has suffered a combination of Strokes. It began when I woke the morning of January 2nd, finding her on the Floor between the Bed and her Closet. We got her to the Hospital, against her wishes, because it was obvious she was no longer Herself!

The 1st Hospital would not listen to us about her Blood Gas and COPD Exacerbation that caused her to be place in a Chemically induced Coma, Twice before in a Local Hospital nearly a decade ago. We had to FIGHT them to even get the CT Scan and MRI done - Then once the MRI results came back they could no longer deny she had a STROKE - Not just ONE, but three and the most recent had hit her Right Parietal Lobe near the Prefrontal Cortex, and she lost her Cognitive Abilities and can no longer recall Passwords, phone numbers, addresses, etc.

Cheri is a former Regional Franchise Training Manager for Skipper's and Winner of numerous Awards for Excellence in her career, Former Owner of Ice Cream Store, Floral Shop, Etc. One of the most Intelligent women I have been with, and was a huge help to me, as I battle ADHD, Autism Spectrum, Borderline Personality, Dyslexia, and she helped me overcome my last bout of Suicidal Depression. She taught me how to use Audible and Podcasts to help me LEARN and navigate some major Learning Difficulties. And, in less than 6 months time, she has been reduced to a Childlike State of Mind. Her mentality ranges from about 6 or 7 yr old to young adult... (Earlier today she said she felt about 18).

All of this was compounded by the fact that we were living in substandard housing which had become overrun with Rats, and no help from the Management. Our home was in need of being condemned and was far below any Health Codes.. Our Daughter, Ashley moved us out of the Trailer while Wifey was in the first Hospital. We now have a very cute apartment in a very secure 55 and Older Bldg.

Cheri was moved to a Rehab Facility that only made her Delirium more pronounced. She declined Mentally while she was in care at that Facility and moved to another Hospital... They ran numerous tests on her that all came back INCONCLUSIVE, and she was finally released to come home, and we tried to establish care for her.

On 15 March, she was taken to Good Samaritan Hospital, where she has been since and had an extensive battery of tests HERE IS WHAT WE KNOW - She has Acute Metabolic Encephalopathy - Damage to her Right Parietal Lobe, near the Prefrontal Cortex resulting in Alzheimer's Like dementia... We STILL do not have the COPES Assessment done, to get her set up with IN HOME care... They wanted to Discharge her tonight, and we FOUGHT IT - Because NO ONE has trained us on how to Navigate her Dementia, or how to Redirect her when she is in some Delusional Reality and petting her purse and talking to it like a cat, or seeing and talking to people her daughter and I cannot see or hear...

I am reaching out for someone, anyone who can offer insight and help, because I am losing my Life Mate, a piece at a time... Every time she has a set back, a little LESS of her comes Home to me. I have times when I sit in the car, for an hour or more waiting for the TEARS to pass, after kissing her Goodnight at the Hospital...

If she has deteriorated this much in less than 4 months, will I even have another six months before she REQUIRES Assisted Living, (In which case, I will become Homeless, because I cannot make the RENT here ALONE), or worse case, she becomes incapacitated to Stroke, or Crippling Dementia??

I am looking for a Face to face Support Group, Locally, and I am going to request Weekly Counseling for MYSELF to be have Guidance and Direction and something or someone to Help ME...

9 reactions 2 comments
See full photo

Missing my Wifey. She's recovering from a Stroke.

This is deeply effecting our Daughters family, as Well. Our Daughter is her Power of Attorney, now. Life has changed so much. Watching my wife go from being a well educated and successful business woman, who was widowed to a Decorated Retired Air Force, and former Spec Ops Pilot turned Firefighter Paramedic. He served with my best friend and are both, now inturred at Mount Tahoma National Cemetery. Now my Soulmate, and Partner in Crime, lol... has been reduced to a very scared and insecure, childlike mind and she cries and apologizes to me because she can't make sense of anything... This is so hard on me, psychologically. I am battling my Emotional Dysregulation, and Trauma Response to darn near everything now.
I am overwhelmed and have little choice than to accept what I must. My wife suffered a stroke to her left Prefrontal Cortex and is now battling Delirium and Dementia... I am losing the love of my life, a piece at a time... My Soul is shattered, there ain't much left of me. This hurts on levels that have only begun. I love her, and watching her suffer is wrecking me.
I miss you, Baby... but I'm right here trying to care for you. And still make sure I don't forget my own care too. Balance will take time. I am fighting for her now. Praying we can find recovery together. 🙏

31 reactions 8 comments

A caregiver’s tips on navigating the healthcare system

Part 1 of 2 My father has dodged death more than once. So many times, in fact, that we’ve lost count. He survived a heart attack at age 36, and two open-heart surgeries by the time he was 38. By the time he was in his 50s, he suffered from debilitating, chronic pain as a result of damage to his saphenous nerve from his bypass surgery and underwent a pioneering thoracotomy heart valve repair. In his 60s, he survived a rare epidural abscess that resulted in a four-week hospital stay after his first of many complex spinal surgeries. Now in his mid-70s, he’s facing a daunting trifecta of heart failure, chronic inflammatory demyelinating polyneuropathy (CIDP), and chronic obstructive pulmonary disease (COPD).

Given the above, my family has had more than our fair share of interactions with the US health care system. Our latest (ongoing) encounter, which has included two heart catheterizations and a stent placement at a world-class hospital, has been particularly eye-opening. Since I happen to work in health communication and patient advocacy, I feel compelled to share some key takeaways with patients, their families, and the health care professionals who treat them.

1. Patients need someone – be it a family member or friend – who can advocate for them.

While we’re enormously grateful for the surgeons, doctors, nurses and other health care professionals who have helped my dad survive, the most important member of his health care team is my mom. She has stayed by my dad’s bedside for weeks at a time; caught countless mistakes with his many medications; flagged serious infections before they show up in his bloodwork or x-rays; advocated non-stop for visits with appropriate specialists or hospital minders to watch my dad overnight; and kept track of his vitals, diet, medications, side-effects, and follow-up appointments.

2. Patients (and their advocates) shouldn’t be afraid to speak up, and health care professionals need to listen rather than dismiss their concerns.

I know health care professionals, particularly those who work in a hospital, are busy and overwhelmed. Nonetheless, when someone tells you that their loved one isn’t acting normally, this should be taken seriously. During the latest hospital stay, I believe my dad’s delirium was chalked up to normal old age and/or hospital-induced delirium. My mom was the one who discovered during some late-night research that it was most likely a result of withdrawal from a drug that was removed before my dad’s procedure and hadn’t been started up again. It took us days to get a consult with a psychiatrist who confirmed our assessment. By that time, we had thankfully already implored the Physician’s Assistant to restart the medication. Sure enough, my dad’s mental state improved quickly. In the past, my dad has displayed confusion as the first sign of a systemic infection, which we’ve also had to alert his medical teams to. The bottom line is that you know your loved one best and have to speak up if something about their physical or mental status doesn’t seem right.

3. If you have a loved one who is hospitalized or sick, don’t underestimate the power of online and offline networks.

I have never been more awed by the willingness of both friends and strangers to jump in to help. I have frequently, and somewhat desperately, posted on local Facebook groups asking all sorts of questions. While they can’t give direct medical advice, complete strangers have given me the names of doctors, aides and home nurses, and more than one local doctor has responded to my posts with advice about navigating the health care system and their perspectives on various hospitals. Many have been willing to hop on the phone. Friends who work in health care have offered to get involved and one even made time to see my dad right away, given the urgency of the situation. I know not everyone is in a position to pull this lever, but most everyone can join disease or condition-specific support groups or neighborhood Facebook pages, and ask, ask, ask.

4. If you’re a patient, or supporting someone who is, take notes, do your own research and write down your questions.

Unfortunately, many health care professionals have not necessarily been trained in health literacy best-practices. Fortunately, I’ve been able to act as a translator for my parents when they need it, but my mom takes real-time notes so we can reference the doctor’s terms and instructions later. While I would never suggest using ChatGPT for actual medical advice, if you aren’t familiar with medical jargon, it can be helpful in explaining procedures and terms in plain language. In addition, my family collaborates on keeping a list of questions as they arise, which we print out and bring to appointments so we don’t forget to ask anything in the heat of the moment.

While these tips

See full photo

Apparently here in CO we know how to ADHD.

I am on pinterest a lot finding things to do, make, eat, and essentially everything else you have ever heard about that site. I even have my own personal collection of pinterest fails (no they are not on the internet). One of my favorite things that pinterest seems to know about me is the extremely goofy stuff that I can't help but laugh at. Apparently my golden hour for this is bedtime. As anyone who has been diagnosed with ADHD or any other condition and those trying more self care probably know phone usage in bed is a big no no, but hey I haven't spent the majority of my life as a rebel for nothing. As delirium sets in I fall down the meme/dumb video hole frequently. This has gotten me kicked out of bed frequently because I end up laughing so hard that I shake the bed and make my wife nauseous. I have come across a town center in my home state that uses their sign as a letter board that has had me in tears a few times, though it wasn't until a few days ago I saw one that really hit home. After all the years I have spent feeling bad about not completing projects and finally realizing the cause (not the fix yet, but I am still new) I can laugh about it and this sign surely helps! Maybe it's our mountain air that leads to a lack of oxygen that gives us our neuro diversity or maybe like science says it is genetic, but people here in CO have your back!
#ADHD #neurodiverse #funny #Meme

See full photo

I miss my best friend #dementiasucks #onlychild #Caretaking #alone #alzheimers

My best friend is my mom. We have been
2 peas in a pod my entire life. In March she had rapid onset vascular dementia with terrible delirium. My dad and are caretakers. Within a matter of 3 weeks I lost her to another reality. We have gotten her out of the delirium, but she has STM loss, horrid anxiety, latent anger and a lack of filter. I can no longer share what is happening with me because I trigger her.

I am an only child, and my dad and have a troubled relationship when it comes to communication and life. He doesn’t listen or talk to me and he said “he was sorry I was alone, but he doesn’t want to talk.”

I would give anything to have her back laughing, and reacting like she used to. I just miss her sooo much.


...held by helium.

…held by helium.

revive my soul.

a refining work continues its need to take place.

there’s no hiding that fact.

there’s impurities galore that keep rising to the surface,

in the ebbs and flows of life’s furnace.

Your promises are a trustworthy pact,

despite the circumstances that I daily face.

make me whole.

sparkle my eyes.

pure silver dripping in the tears I shed,

my requests rise to You.

the light of days and nights and scars

penetrates the hopelessness of prison bars.

no matter what I say or do,

I need to trust You rather than my head.

truth be wise.

hands that move,

rise up skyward as if held by helium,

searching beyond earth for reward.

You alone are my inheritance.

help me hold You in complete reverence.

taking roads least explored,

grace that covers the depths of my delirium.

find my groove.

lift me up.

unfailing love is the ultimate blessing.

come to my rescue.

I need to sing because You are good.

give me the courage to act. understood?

my body is Your venue.

woo me with Your righteous caressing.

fill my cup.

© Mark Bryant. May 7th, 2021.

[Psalms 12-17, 19-21]