Living with ADHD, EDS, and HSD - Dr. James Kustow
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- Опубліковано 31 тра 2024
- Dr. James Kustow joins us at our Edinburgh conference, and speaks on the subject of ADHD, EDS, and HSD, and offers insights on the connection between these issues, and offers ideas on management.
Transcript coming soon! Slides used in this presentation are available from bit.ly/37C9R6c
I'm sitting here watching this video, laughing alone at my computer like a nut because this reads like a flippin' autobiography... Gotta laugh or I'd cry.
Yahoo hu? Grin oxox
Though your journey with pain and disability is clearly difficult, I’m glad you can laugh through your tears. Though I’m now an old lady, laughing through my tears brought me strength in the darkness wof EDS and more. Thinking about you - Saundra
I m damn clever and smart when left alone by nuero typical fools - I have lots of energy - when I can get on with my life I am good 😆
The ego/fear/embarrassment issue regarding doctors not knowing about rare disorders is too real
Yes. And it's causing so much hurt. Patiënts who are ridiculed, dismissed, stigmatised and written off. It's devastating emotions and damaging self esteem and self worth.
Mine googled it lol. Then called me back
And the truth is that ADHD is not rare. I suspect the same for hyper-mobility disorders. It’s time for doctors to get training in what these very real problems are so they don’t end up harming patients by labeling them with a personality disorder due to their own ignorance.
In small town/ rural America it is even worse. I know some HIPPA laws were broken about my condition. Doc told his wife, she tells her sister, sister and my daughter law chat about it on Facebook.....
I would highly recommend that any clients with ADHD be also screened for Autism - especially girls and women who can be misdiagnosed or missed.
I agree! ADHD and Autism are part of the same neurodivergent spectrum, and given how little the public seems to understand about autistic adults or those with ADHD, don’t be so quick to throw these considerations out the window. Autism looks like a lot of things, not just what you’ve seen on tv or social media. There’s a huge (anecdotal) overlap between EDS/HSD and folks with ADHD or autism.
also clients diagnosed as borderline, bipolar, manic-depressive, sociopathy, NPD, and quite a long list actually, are people who usually end up being misdiagnosed for autism
@Anna S This "caffeine" test is not an ADHD test. EDS/POTS people have the same effect from caffeine, without having ADHD. Because caffeine helps with intracranial pressure.
I have both diagnosed with Aspergers at 23 and ADHD Inattentive at 40
When I was diagnosed with ADHD, they said it was more likely autism combined with my chronic pain and fatigue. But I couldn't justify paying another $1500 for a second assessment. And both appointments for neurodivergence and for rheumatology, have a 4 year wait list to do it for free in Canada. My occupational therapist specializes in multiple conditions, and has an autistic husband and tells me what works for him, and that often works for me, so both of us are fine with what they call "community diagnosis" where you aren't able to get an official diagnosis, but by talking with the community and people who understand autism, they basically say that yes you have it, but we're not allowed to give you a formal document. I needed the formal document for university accommodation and they said ADHD would be more helpful, which I'm glad I have it. I get extra time, I get those stimulant meds that help with my dizziness and brain fog, and it also got me in to see a learning disability specialist on campus as I also have dyscalculia. It's really hard to pinpoint with so many overlapping things, and I have ADHD, autism, hypermobility, non-celiac gluten intolerance, seasonal rhinitis, and heat intolerance all in my family. So they think I'm normal because one cousin does this the same, or my grandmother was always like that, so it's complex.
Wow, this is me! Never knew the hypermobility could be connected to the anxiety and adhd. Thank you
Same!
Me too!!
If you have loose neck ligaments (needs digital motion X-ray) then you could irritate your vagus nerve which is responsible for the pots, dysautonomia, gastroperesis, etc plus it causes lack of oxygen to the brain and also the brain fluid gets trapped and doesn’t drain properly and stays dirty causing toxic brain syndrome.
The caring medical clinic in Florida is doing groundbreaking research on this and successfully treating EDS.
I have loose neck used to crack as a child.aspeegers sure I have as my mum she had severe ms rhinos ime in the uk surely all this connected brilliant work I've had pots now ok it's pain fir me now anxiety ocD from birth had the exray helped you
Yeah larger amalgamia in the brain j Eccles proof
i’ve been diagnosed with adhd for about 7 months now (i’m 22yo), and my psychiatrist is the one who advised me to make an appointment with a rheumatologist because he saw in me symptoms that other of his adhd/asd patients had. i haven’t been able to get the appointment yet, but should get it next month. none of my other doctors (gp, physical therapist, and dermatologist) had noticed. i’m a trans guy and had top surgery a year ago. the sutures popped open a week after the surgery. needless to say, i would’ve loved to know about before hand. i’ve had subluxation pretty much my whole life without being believed because “it would be too painful for you to just keep going with your day”, or it was pinned as “growing pains”. i’m excited to find out the kind of care i’m going to be able to get now, but it’s saddening to see how unknown this condition is by medical practitioners.
I’m doing this three years later. I’ve never heard him speak before but right off the bat when he says, I am used to speaking to professionals, and then goes on to try to say he speaking to what Les people. No, he is speaking to the professionals. Anyone with this disorder is the professional we just do not have the medical degree.
I've been absolutely BAFFLED by the fact that my knees instantly begin aching as soon as I feel stressed out
So refreshing to see someone in the mental health field whos willing to look deeper and to work out the collation ! Makes so much sense and hope there is more research into this so as to help young people avoid the abuse ive had from medical and mental health sectors.
Been lucky enough to be on James course in Barnet. Been unlucky enough to have ADHD, JHMS, probably EDS, dizziness, massive heat intolerance, itchiness, brain fog, need to lie down a lot. All of this makes total sense. I wanted to get a neoprene suit to learn how to move properly & my physiotherapist laughed at me & called me a hyprocondrate that just needs to stand up straight. Not many people understand this at all, I'm really glad James does.
"just stand up straight"
...I thought I was 🤷
"Nope"
What do I do differently?
"Just...do it?"
Thanks mate 👌
I get itchy too…is that related to HSD?
Dizziness due to POTS?
@@carly9355 yes, mast cell disorders
I was diagnosed with EDS ADHD and lots of others but you really shouldn’t diagnose yourself😅
I have ADHD. I just got diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) I also suffer from hypermobility. I discovered HEDS while looking at things I could do to help with fainting. This is huge! Unbelievable. My whole life is starting to make sense. The struggle is very real. I have a time with a specialist in two weeks for diagnosis. It’s been a very very long road getting to this point. Everyone’s story is unique but if I could help with awareness, let me know! 😊
Hi Chrissy, if you'd like to share your story you can do so here: www.ehlers-danlos.com/story-submission/
@@TheEhlersDanlosSociety if it would help anyone through this diagnosis nightmare I’d be more than happy to help. There is so much stigma in regards to mental health, especially with prejudice associated with ADHD. Even when it’s been proven that my heart isn’t working properly, I’m questioned and belittled every step of the way. Awareness is the only way to move forwards. I’m exhausted
My son and I both have ADHD and both have hEDS.
That’s me. I live with HEDS, ADHD, alone, and isolated. I paid for diagnosis, treatment and self management. I m injured from a therapist over mobilising my shoulder. I was labelled with an emotional disorder. I adapt
Physio injured my foot 🦶🏾 legal case against them
I would like to express, I don't think all of us with EDS hyper mobility, that cant stand for more then 5 to 10 mins is related only to blood pumping issues, as much as it is, that we just cant hold our bodies up due to ligament weakness like a door falling when the hinges come off. with in 5 mins of entering a store expressly warehouse types concrete floors etc. I'm a wreck. There has been numerous times I've had to leave the store and my full shopping cart abruptly. Other times i would just lay flat on the floor where ever I was. sadly enough it became the norm for my children to witness. Unfortunately now that they are adults they too are suffering with EDS, 4 out of my six children. Each with his own complications. Thanks to heart felt Doctors like yourselves I've been able to help myself and them a bit more. and thank you for thinking in side and out side the box.
Check out the caring medical clinic in Florida
@@ElfisPerezLee Yes, "Caring Medical" in Florida has a UA-cam Channel and Dr. Houser is so knowledgeable about the body'sconnective tissue and how it affects bodies, as well as organs and organ systems He's a wealth of knowlegde. He's very compassionate toward ppl who live and constantly cope with this and other spectrums of illnesses. He understands that gravity is a big factor working against ppl with EDS, for example to isolate the real culprit, functional XRays and mRImaging are a must, and many if bot all images need to ne taken sitting or standing has a profound affect on how certian parts or ôrgans work or misfire. In many cases laying down literally hides the issue and worse than not being deteted, not seeing the issue on imaging, the patients can look even more like a hypochondriac. When I think of all the time and health of wasted allowing guys to be injected into my bloodstream in order for the doctors to better see what they needed to see, but because I was lying down the problem area was camouflaged into looking fine. Just as the situattional difference between having POTS while lying down versus POTS when standing. The difference And the answers that can be obtained in these totally different positions is beyond remarkable. And with the correct picture of what is actually going on with the patient from day to day in hand, doctors are able to find more variety of solutions in dealing with body mechanics that are for various reasons not working optimally or in some cases, they arent even meeting the minimum required for a specific portion of the body to pull its own weight, or at least not infringe on another, nearby or even further away located, but referred to, part of the body. Sorry this is so long, but its infuriatung that only a hand full of ppl and even fewer of them are able to properly evaluate and show proof of why so many ppl are horribly sick and/or hurting. Health care systems and their professionals should be flocking to this man, Dr Hauser trying to make up for lost time in helping people who are living miserable existences with connective tissue issues, p o t s, dishonomia, cervical instability, Vegas nerve laxity,, Chiari malformation, all kinds of musculoskeletal and connective tissue as well as neurological and other medical issues, and whether they have to do with EDS or not, the list goes on and on. There are theraputics that can help, and the sooner they are implemented the better. The jury is no longer out, these illnesses are accumulative and unfortunately, many are highly progressive. But it doesn't have to continue being done in a less than optimum way, just because that's the way it's always been done. People are suffering and dying horrible, sad and lonely deaths because these illnesses are so very misunderstood, and misrepresented, some imo, maliciously. Because of money to be made. Sick ppl are more profitable than well ppl. Let that soak in.
There was a time when the Doctor who determined that hand scrubbing and sanitizing prior to doing surgeries or delivering babies had a profound out come for the patients, mother and infant. It's a very interesting story, because this one Doctor was laughed at, riddiculed shunned, called a quack, and I believe he died in a mental institution after years of struggle and losing his livelyhood. Talk about bullying someone to the point of no return. But later, when microscopes were developed to the point that allowed invisible and deadly strains of bacteria to be seen it vindicated and proved this doctor was correct in his line of thinking and his intuition. It's an interesting story. Despite being a very good doctor, after being shunned fired from the more well equipped and prestigious hospitals, he was sent to work at the poorer hospitals. After a while, word and statistics got out re: the lower death rate among morhers and children who deluvered at the hospital where this doctor worked and evidently had some oversight regarding hospital policies and was strick about hand washing, so even the wealthy women wanted to deliver their children at the poorer Hospital... bc the infant and mother survivability rate at the hospital worked at was known to be mych greater. Human intuition is real. Even though the reasoning couldn't be understood or explained till later, this Doctor and these Mothers didnt need proof 1st, they simply did what worked. The hospitals where the doctors thought too good of themselves to require extensive hand-washing before, surgeons and Doctors were too full of themselves to Believe their hands could be the source of spreading bacteria. It was an ego and arrogance weakness within themselves.. The longer their Dr.'s white Lab Coat, the more intelligent and knowledgable they were percieved to be. It was all a farce.
I got way off topic there, my apologies, but Dr Hauser is, in many ways, ahead of his time, thete are other Prolo therapy Drs. We need many more, that undertand the value of functional MRI imaging, etc. He's genuinely nice, caring, unique in a rather quirky way, round very yellow glasses are unusual, but he likes yellow, bc its cheerful. Regardless of which glasses he wears, he seems highly educated, intelligent and still down to earth. A very decent and kind human being trying to help make vids that explains why our body mechanics get so far from where they should be to hopefully get bettet and feel our best. Early intervention is key. Ive been sick all my life with 1 things or another. Ive done my best to ignore these symptoms all my life, bc that what ppl told me to do. Ignoring compressed veins and pinched nerves doesnt make them go away. Tho some have un kinked thenselves, but most will catch up to you in your older years, and by then avlot of damage has accumated.
I've never met Dr Houser personally, unfortunately, but I have watched many of his videos and I gather these things about him from his YT Channel called "Caring Medical". He’s trying to share what he knows about helping ppl while he can, and hopes that other Doctors will also learn from his experience in helping patients resolve their issues, get well and thrive. I've been watching long enough to know that the sooner someone is properly diagnosed and given effective treatment, the less debilitated they become over a lifetime.
Damn. I am diagnosed ADHD. But I don't have diagnosis for other stuff I have. I do have hyperflexibility and IBS and issues with dysautonomia, although not severe enough for a POTS diagnosis. When I don't have to go to work or have an obligation to do anything I will just lay down in bed basically all day. I am too tired and have no motivationfor anything and i am constantly achy. I have a physically demanding job which helps but I am unable to work adequate hours really. I need tons of recovery time from most activities. I have been this way since childhood. I also have sleep apnea since childhood too. I definitely think i have orthodtatic intolerance though no diagnosis. It was especially bad when i was pregnant. The struggle not to faint when standing still was very real. I have been in a terrible brain fog my whole life. I don't have any severe symptoms of anything to warrant. Diagnosis of anything it seems but my life is suboptimal because I just don't have the energy for anything. Anyway, at least it seems like there is a real thing herethat seems to describemost of my dysfuntion...
why did you have that many children?
Definitely think my daughters ADHD is secondary to her HEDS. I’ve thought this for over 2 years. Really hoping there was more research was done around this.😢
I have ADHD, Binocular Vision Dysfunction (the eye issue), and today I just went to a Rheumatologist who diagnosed me with EDS. I’m pretty sure that I have POTS (or something similar) as well. My mind is blown at the potential links of these. I just started the video, can’t wait to learn more!
That’s hilarious. You and I have her all the same issues. I’m diagnose the parts as well on top of it and oh boy it’s exhausting.
@@sharonkaysummerford2099 I don’t know how you can get an ECG to diagnose you with pods. I had to have a tilt table test ECG will not get you that diagnosis in Canada
@@FERRARICWH69same here in uk the only diagnostic test for pots is Heads Up Tilt Test. Just had mine and got my diagnosis of hyperadrenergic pots as BP shoots up with HR 😊
Diagnosed with ADHD, BPD, anxiety, depression, POTS, and being sent for hEDS evaluation. I also struggle with severe hypoglycemia not caused by diabetes.
If I had a dollar everytime I was told to “stop complaining, push through the pain, you’re just being weak” I could afford the specialists I need 😂
I'm in the process of getting my HSD diagnosis upgraded to HEDS, I've gone through this information so often, BUT... Every single time I watch a new vid or read a new article I have the same reaction: "Oh... ooooooh... That explains THAT then". It truly boggles my mind how difficult it is to get a diagnosis when people living with HEDS, ADHD, ASD etc look at the list of effects/symptoms and consistently just tick almost every box. It shouldn't be this difficult to get a diagnosis. 😟
The audio needs to be normalised.
Lol.
Thanks for the link had similarities with what my guy was saying
Yes, another thing that often comes with ADHD and some other conditions is auditory processing disorder, so it makes it difficult. At least the slides show most stuff, that's what I do in university, mostly just watch the slides.
I have EDS ADHD and lots of anxiety! I’m only eleven I. Know crazy but I’m the first generation of children to have it! I’m glad I am not the only one..stay safe and get well!❤ (talking about EDS btw!)
It sucks that you have these dysfunctions, but I'm glad to know that you have the knowledge & language to describe it. I'm 55 & just thought I was bad when I was a kid. I wish you well on your journey. Kindness is a great strategy - begining with yourself
I haven't been diagnosed with EDS or ADHD, however I was diagnosed with hypermobility years back. I have always had some adhd issues but didn't realize just how much. This information was so helpful
I'd like to see research done on the correlation of eds and autism , it seems as though every autistic person I know including myself has either eds heds or hsd
I would like to see research on that as well. My daughter has autism as well as Narcolepsy.
Check out Jane Green and Jessica Eccles. 👍
Wow wow wow. This was like he was narrating my health struggles as a kid. I'm amazed that none of the doctors I saw connected any dots.
This video has been the most educational so far regarding my daughter, and her multiple diagnosises. She has ADHD, bipolar disorder, OI, heart problems (we suspect EDS, as she was screened and met markers), has anxiety AND Narcolepsy type 2.
Please stop dismissing girls and women in medicine TY. Almost all I know with hypermobility have signs of ADHD. Including me. But no support or diagnosis. Autism too. Among many other chronic issues I outlined here: ohtwist.com/the-chronic-constellation
This would explain why the amygdala is hyper-activated in OCD.
I have undiagnosed ADHD...family history of it (undiagnosed father and sister, diagnosed half brother and diagnosed nephew). Both my kids are ADHD (diagnosed) my kids are both hypermobile, my daughter can contort. I have joint pain, I had recurring patellar subluxations when I was a teen for which I had surgery for, I recently was told I could have EDS after joint pain that is not an autoimmune--I have had 3 rounds of tests within the span of 2 months for RA, lupus, hashimotos--all clean. I have translucent skin, varicose and spider veins, TMJ, joint cracking, my left rib partially pops out, sometimes, hypermobile (I thought these things were normal), bladder urgency, infections--including a bad double kidney infection I was hospitalized for. I have allergies, but I get hives and rashes that don't seem to be due to an allergen and when I scratch, I bruise and moreover bruise easily. I have stretchy skin too and soft. I used to know someone with Visual Processing Disorder, a child, who would calm herself by petting my arm because she said it was soft. I have stretch marks on hips, butt, thighs, and the back of my knees. Medical tape gives me rashes. I have dry eyes, dry mouth, a weaker eye where the nerve twitches. I feel dizzy when I get up too fast, when it is hot, when I go hiking, In 2018 I had--what I now recognize as an acute episode--I always have episodes in the summer--I had a double kidney infection, extreme fatigue, fainted in the shower, joint pain--but also went through a traumatic life experience in 2018 and was really anxious. I am waiting on a genetic panel, but all my symptoms make sense now.
Sound spretty much like classical and hypermobile eds. I have both and all of your explanations sound like me plus add on pfcpurse two mini strokes before 34 and complete memory loss (dysphagia), adhd severe dysautonima and chronic insomnia and migraine. Constant pain and constant streaks of adrenaline and cortisol. Always stressed, always feeling like I'm going to die, often wishing I would. I promise it gets better. No I don't have money. My best friend JUST killed herself aug 2, 2022, I'm a single mother to an EDS child who's father died of covid on his 5th bday, I'm broke and in the kdst of trying to relocate. Get creative..I went to school for holistic nutrition and because our bodies are beautifully sensitive..intermittent fasting (16:8) & keto diet w extra local and organic vegetables, lots of water, electrolyte packets and supplements help SO much, my POTs literally disappeared and gor the brain, I did ketamine infusions. Anything you cdont understand, just Google.
Ketamine helped with dendrite-synaptic connections (memory became stronger, thinking clearer, better cognitive abilities, less reacctive and emotional when I'm an over reactive, overly emotional person biologically, not bc I'm a p*ssy)
Supplements: PQQ, coQ10, turmeric, MSM, glucosamine chondroitin, full spectrum multivitamin that's from WHILE FOOD SORURCES (primal code Brand), a quality probiotic, pycnogenol.
Basically get a cute little cup, throw about 6-7 of those vitamins/supplements a day, eat between 11am-7:30pm, stop eating until next day at 11am. Sleep is a MUST, eat a handful of sleeping pills if you must..SLEEP, exercise, nutrition. That will wipe out 80%of your problems. I sh!t you not.
If you don't listen to anyone , listen to this. This is your sign.
It really, actually,literally works.
@@karencarney7595 sorry to hear of your problems and losses as this cured alot if your pain I have hypomobilty fybromyalgia pelvic pain 25 years.mother ms father had CFS both hypomobile but don't dislocate.
Sounds like you have Mast Cell Activation Syndrome …. ❤
My left rib also pops out a bit! Do you know why yours does and how to fix it?
chronic oi and adult diagnosed EDS and ADHD. my head feels half dead. once in a blue moon, I've felt normal, briefly, so I know what not normal is. I feel not normal 99% of the time like as if my brain is in spasm, feels like somebody squeezing my bloody head, and my ears feel like they are trying to turn inside out. muscles in my face, and head, and neck, constantly feel cramped. Constantly want to lie down. Try to fight it, keep on my feet. 10% of my day, I feel coherent. 90% of the time, It's like I'm in a dream, bumping into stuff, dizzy, sleepy, or wound up and edgy, etc. in cycles. mostly feel like how I did when I got knocked out by a softball when I was 7. Hey at least some of us know we're not just anxious. For 48 years I thought that this was called 'anxiety'. Until I got the right cardiologist. Thank you Dr. Dewart!
Watched the vid to get help with adhd but couldnt concentrate. Will have to watch again
I think brain fog is quite different to the attentional difficulties described by ADHDers. An ADHDer can generally tell you what was distracting them, whereas someone with brain fog generally can't. The one with brain fog feels unable to focus on anything whatsoever, whereas the ADHDer (quite contrarily) cannot help but focus on something, even if it's the wrong thing
Agree. I had adhd and suffer from brain fog after a hypoxic head injury and fibromyalgia…. I won’t life everything lol. Attention deficit is distraction, not paying attention, day dreaming, switching off which is very different to my bad brain fog days. Brain fog you just feel dusty! You can’t focus or concern grate, your forgetful, irritable and everything is slow, it’s a heavy feeling like your head is almost full. In my opinion
A friend with likely ADHD and definitely hEDS linked this to me, who definitely have ADHD and a mother with diagnosed hEDS... This was a lot.
Thank you so much, to everyone involved in this conference, both for the information itself, and for the open, sincere, and truly informed and caring conversation -- I didn't expect how incredible it would feel to hear so many people talk about their own thoughts and needs and knowledge and be told yes, absolutely, you are correct, here is an answer, here are tips, here are resources, here are ways to face the crappy ways you will get treated. All with people using the language I know and addressing the topics I wonder about too, without softening or mocking or suspicion...
Thank you so much.
I’d love to have fermented foods, but like many of us with HEDS I have mast cell issues and problems with histamine. Fermented foods are not good for people with mast cell issues.
I discovered: bioanimines are my triggers. Anything alive cultured, protein conversions not too able to explain YES MAST Activations! Protect your gut base line and Figure out HOW! Covid is waking everyone up to how delicate the body and immune nervous system is but we needed to know Years ago. Sheer Hell being ones own discounted advocate. those who can not surf further harmed.
Can you explain? I'm so new to allow this
I just got diagnosed last year with autism and ADHD at the age of 20. I’ve been dealing with scoliosis, hyper, mobile joints, and chronic pain since around 12 years old. For so long, I thought it was all in my head. I went to the doctor today and I was told that I most likely have hyper mobile Ehlers downloads syndrome. And I am on a waitlist to see an orthopedist. I’ve also struggled with dysautonomia symptoms. It’s going to be a while until I see an orthopedist, so I’ve been looking for other resources I can tap into until then. I could not have found this video at a better time.
Ive just found your channel and going to binge watch.
I am on my last attempt with linocloptide. Its not working. My surgeon has said ileostomy is possible due to no motility like you as well as intossception and rectocele as well as odd shaped bowel. Thanks EDS. Last appointment I told him i have had enough. He is hesitant with ileostomy due to risk of hernia etc with EDS. Finding your page and having a similar journey makes me feel less alone as well as gives me someone whos experience i can show him. Thank you for doing this. You are helping more than you probably know.
I’m laughing and crying, my emotions are swinging from relief, hope, anger and sadness.
I have had so many specialist doctors for so long I felt I was crazy- how could I have a issue here there and everywhere… when a doctor would recommend another specialist I wanna scream! I’m one body!!!!! I’m not a car in which parts are made in different factories… they’re all me yet I’m constantly pulled apart and often times I felt unseen even when sitting in sight of the doctor. I.e I have migraines but my side facial ear and jaw pain are to be managed by another doctor…. A facial pain specialist sees me gives me splints but after awhile refers me to PT. I’m already seeing a PT for my neck back and pelvic floor pain. Ahhhhhhhhhhh can’t anyone see me! I’m here a whole 😭.
I have a primary care doctor
I have two neurologists
I have two physical therapist
I have an two orthopedic doctor.
I have two gastroenterologists
I’ve seen just a rheumatologist
I have two ophthalmologist
I have Head Pain specialist
I have two OBGYN
I have a urologist
I have a dermatologist
I have a psychiatrist
I have a counselor
And for the first time in my life I feel seen
Idk if I have this but I ran through the flexible test and I passed
I have so many diagnoses and yet many don’t fit even my doctors have admitted that some of my diagnosis don’t fit but what else can they do
This won’t cure me, heck this might really do anything for me in terms of care
But what this will do is help me understand why, and how… if I have this it will finally give me something that makes me feel whole.
*I asked 3 of my 8 siblings to do the test they passed
When I say everything and the kitchen sink I mean it- chronic pain has been the only constant I know.
like 🍜🦆! it’s a damn 💡 .
Thank you, James, for such a wonderful talk linking this together .
I was diagnosed as hypermobile years ago and have been asking various doctors for an autism and ADHD assessment to no avail for years. Now that I understand there is a link I will present this to my GP in the hope of an assessment. It's an absolute nightmare trying to get help in the UK.
I've also found the channel Purple Ella to be helpful. They have ADHD, EDS, and are autistic. Ella has also done some interview videos with other autistic folks for the NHS recently, if you'd like to look those up on UA-cam.
Good luck. I’ve been suffering here for years. Screaming to be heard. Ignored. Fighting for my life. Can’t eat - still have a false diagnosis of an ED on my med report. I’m starving! I can’t eat for three years! I’m in a full time seizure state now for over a year and constantly asking for help and being treated like absolute shit by most of them.
We are getting lawyers now
ADHD and Ehlers-Danlos... *all* these symptoms (like clicking thru a checklist), the consciously having to focus on normal daily movements/brain fog, weird injuries from nothing, near-constant chronic "revolving" pain across different body areas and systems and worst I f all not being believed, wow my whole life from very small child... smh. I'm 60 now. This explains so much. TY
40 year old male here and this is eye opening. Started looking for a video to help with my shoulder pain, I have double jointed shoulders and they are really bothering me lately. I have dislocated them so many times I have lost count. I can take them out of socket whenever I want but it also happens when I don't want and that hurts quite badly. I am usually able to get them back into socket on my own but have had to have a doctor do it a few times. Crazy thing is once it is back into socket there is instantly almost no pain and I'm able to continue what I was doing. I have also had my knee dislocate on more than one occasion while I have been asleep. I have no idea how I managed that but that hurt incredibly.
On top of that brain fog has been insane for me lately, I have no drive, I don't finish anything, I sleep as much as I can. I'm not flexible but can dislocate my thumbs, shoulders, and wrists on command. I constantly fidget, I would imagine I'm incredibly annoying to try to relax near. I crack my knuckles constantly, my neck, my shoulders, my knees, my toes, virtually every joint in by body I can crack or self adjust. Basically I am struggling lately and this gives me some valuable information to use. The next problem is I am extremely stubborn and hate going to the doctor plus the bills that will rack up will ruin me. I do not have health insurance. As I'm typing this my shoulders are burning and I've cracked every joint in my hand 3 times. All this typing and it will probably get me no where sadly.
This is VERY interesting! I was diagnosed with ADHD 22 years ago (seems like only yesterday!). My psychotherapist once asked me if I had EDS. And my response was, "What's that????". Since then I've done some digging and ..... That sounds very painful! Right now I have 2 torn shoulders and I will need surgery on one of them cause it's a full tear of the labium and partial tear of the rotator cuff. I slipped on ice and fell at home. I also wear afo leg braces.
I want to assume it happened when I was on the chemotherapy, taxitere. I went through a breast cancer battle as well. 😬
THANK YOU!!!!
I personally believe it's inflammation.
Thank you for the continued research into these things! They all go together!
I'm beginning to suspect that I am 2E with ASD, ADHD and hEDS but I don't know how to go about treatment. My health care provider thinks its just depression and bad posture but I've done my research and know that my symptoms SHOULD be alarming to a Physician, doesn't help that my only healthcare is the VA
Great talk ❤️
This explains so much of what I experience!
Good insight about ADHD AND EDS
I love these presentations, I feel like they GET me
wow thanks so much for this info! It explains soooo much for me! I will definitely be rewatching this one!
This is incredible and extremely relevant in my personal experience. Thank you!
Very interesting talk! I don't think I could take my medication properly if I didn't use a phone app. As for exercice, I have experienced first hands the benefits of regular exercice, but my biggest problem is injuries. It's difficult to get my routine started because of my adhd and depression (and now evolving chronic pain), but when I manage to I feel great until my next injury that benches me and I have to start again from the beginning, building my strenght back up, doing basic exercices and checking my form so that I don't further injure myself by moving wrong.
My occupational therapist who does a session for POTS said swimming was the best thing to do, which I did regularly in the summer after sewing myself a bathing suit with long legs for compression. My problem is that I get allergic reactions to chlorine and it keeps getting worse, so there's only one pool in my whole city I can swim at, and it's like $7 a day since you can't get just pool access, you have to buy a pass to the whole building (basketball, volleyball, badminton, running track, weights, etc). I used to go on their cheap nights, and going from the sauna to the salt pool felt so good with the heat issues and pain. Sadly I'm not able to go there now due to the pandemic, and the university pool is extremely chlorinated. Any other exercise makes joint pain pretty bad. I've been walking and doing some stretches, but I have no idea what range of motion is normal for my hips as I sent a pic of me sitting to a chronic illness group chat, and they said that's a sign of hypermobility and to not sit like that. Most of what I've been doing is stretches to crack things back into place.
This shit is hell on earth 👽 chronic OI
I thought other people see stars too ✨
I use pill packs and I bought an Alexa which has been a God send for me. She reminds me of everything and all I have to do is open my mouth to speak in order for her to do so.
I so appreciate this lecture being posted. Everything he’s saying is incredibly validating and helpful!
I feel like this guy has been observing my life. It comforts me that the patterns I think I see in my symptoms may actually really be there. Physical and mental symptoms really are linked. A change in one means changes in every symptom I experience.
I'm going to be sharing and showing this talk and doing more research.
I want to say thankyou for giving me some hope for the future.
I've suffered all my life and experienced a sharp increase in severity of symptoms when puberty hit. My regular flare-up of symptoms occurs the week before my period and lasts 2 weeks (week before and week of my period). As I get to the end of my period my symptoms improve.
I also suspect that I might be going through early menopause as my period has started to be unpredictable, missing for months and then coming every two weeks then missing again, etc.
Sounds just like me! ❤
I'm so sorry that you have to deal with these same symptoms as I have... I'm hoping that in my lifetime we can educate enough people and make a difference to the quality of life for those of us who have invisible illness and chronic health challenges.
I hope you are able to find out what is causing your symptoms and what you can do to help manage them.
My journey has changed as my old doctor retired so I now have to educate my new doctor. So far we are reviewing my medical history and hopefully soon I can give him some more information about my current symptoms.
Blessings, Dot
Yep I have hyper mobility not sure about EDS yet but they are looking into but I too also have ADHD!
Woah, 11 months wait? My city has a 3-4 year waiting list! I got diagnosed with ADHD but the person who diagnosed me wasn't sure that was it. I was later diagnosed with POTS and got some compression socks (ToeSox brand as I get really sweaty toes and can't stand them sticking together). I've also been diagnosed with multiple chemical sensitivity, and both autism, and central sensitization have been talked about as well, but now I'm thinking of EDS as my family does have history of joint issues. I was told it was just our hereditary non-celiac gluten intolerance causing healing to be slower and the joint pain. Yes, my pain improved when going gluten free, mostly because my rashes went away and I didn't have the GI issues. I have been taking stimulants, as well as GABA as needed, but my doctor doesn't know anything about such conditions, so it's a long process. I went to neurology, chiropractic and laser therapy, physiotherapy, CBT, and occupational therapy, but it's so hard to manage.
Very informative and offering several helpful suggestions. The doctors seem to have an understanding of the complexity of hEDS. Most appreciated!
This is so insightful!💓
I have been diagnosed with hEDS, POTS, ADHD, depression, anxiety/social anxiety, and PTSD. It sounds like I have all of the symptoms of chronic orthostatic intolerance as well. The heat intolerance brought it all in for me. Nobody has understood why I had heat intolerance or that it was related to hEDS at all.
I do see a psychologist weekly but I have been in need of a psychiatrist. It would be amazing to have someone who understands all of my conditions.
Does Dr. James Kustow work with patients online or is there a psychiatrist I could work with that he would reccomend? (I live in Oklahoma, U.S.)
Same, I have most of that. When I was little, it was always 'it's just from the divorce" since my parents split at 5, but I did have some traits of ADHD and/or autism since as far as I can remember. My mom has MS, low blood pressure, and heat intolerance, so she didn't know what wasn't normal. I know I don't have MS as I did MRIs, but I think we have a similar combo. Unfortunately my stepdad comes from a place that's warmer and he likes the heat so even though my real dad paid for my mom and I to get heat pumps, he refuses to let us use them on the cold setting. So I've been doing my online classes in the basement in an old La-Z-Boy chair so I can rock while being cooler, but now I'm back in person twice a week, I've been noticing the joint issues more.
I have these conditions as well! I also have lipedema which is another connective tissue disorder. Very nice to see you here. Hope you are doing well!
Similar boat...I think there are a lot of us. I see you posted this 2 years ago, I hope you found relief in that time!
Me to my mum also has severe ms I have fybromyalgia anxiety I've had pots that git better hypomobility what a link to all this stuff do you have much pain? The genes all connected
Always had this where shirts in winter
Proper nutrition & original exercise, passionate emotions,
I appreciate your compassionate and aware professional and heartfelt perspective.
Although
I have not been diagnosed with austism,
I have suspected a mind autism all my life because
I also have savant abilities. As an extremely high functioning woman,
no physicians have explored these questions connected to
ED .
A lifetime of of catastrophic symptoms musculoskeletal, circulatory and nuerological issues.
Yesterday when I was finally diagnosed with Ehlers Danlos on my first appointment with a geneticist.
I am 52 on borrowed time.
So far no mention of autism yet as an artist of countless mediums, writer and chef
few will examine or explore
the diagnosis or expanded nuerological changes I am currently experiencing that are crystal clear to me.
This perspective has been ignored and belittled for decades as irrelevant by multiple Nuerological and GP physicians.
Thank you for illuminating the likely connections and unifying issues.
Including a few solutions.
Many thanks, sincerely.
I wish I was In the U.K. for treatment.
Thank you!
Excellent lecture.
I love the answer to the question about adherence to medication. He vastly overestimates how regularly people with ADHD actually brush their teeth 😂
I thought exactly the same. When you have ADHD or EDS for that matter, you struggle with executive dysfunction... Remembering anything is a huge problem. My 10 year old son with ADHD forgets to drink ALL the time. Despite his teachers following my orders and putting his water bottle at his desk so that he will visually be reminded to drink - his focus is elsewhere and he constantly get constipated because of it. Anyway, a fixed rutine /schedule is the only thing that works. You need a time schedule for the entire week and the entire day has to be organized into to do lists. That is why bullet journaling is so valuable for anyone struggling with executive functioning. Everything from brushing teeth, medicine or supplement dosage to drinking a glass of water, school/work//leisure etc should be listed and when you've done it you just cross over it with your pencil so that you know you have completed the task
I have both Elhers Danlos and ADHD
Welp... putting on my compression socks right now!
This is a brilliant discovery. I have adhd, and the patient in your video also has tiny veins, I have tiny veins, I cannot give blood. I sometimes suffer from head rushes. I am not hypermobile but I did have my first ever partial dislocation of my knee cap a month ago I'm seeing a physio about. My sister has Lupus and my cousin suffers from EDS. I wonder if there is a link between autoimmune system diseases and adhd too. Because my sister needs CBT and benefits from it for her mental health resulting from having Lupus, she is very similar to me . I'm awaiting to start another type of adhd medication Elvanse as other types don't agree with me too many intollarable side effects. I'm 36 years old, diagnosed with adhd 2 years ago. I've had all manner of misdiagnosis over the years.
Anyway, sorry for the OTT information sharing but thank you so much for this brilliant presentation 👏👏
Thank you so very much. I went to my family doctor recently. I have ADHD and I was looking at EDS, even though I do not seem to be classically hyper-mobile like with the fingers, elbows. But I am oddly overall unstable, my knees dislocate easily, my arms dislocated several times as a kid at the elbow and my shoulders are kinda loose, I have scoliosis and my back seems very flexible. I cannot bend my fingers back or towards my arm, but when I hold stuff, I feel like my hand will come apart from my arm at the joint. It's a very scary feeling.
Other than that, looking at the EDS criteria, I found so many things that I can put check-marks behind. I even found things on the list that I thought I do not have, then I looked them up and .... ops... turns out I do (the...I forgot the term. The bumps as the heels).
I did ask my family doctor if he knows EDS and he said "not from the top of my head" and I said: "That is alright, after all it is rare and also a differential diagnosis, too. I'm not sure if it's that, as I was with ADHD and my Endometriosis (both official now). But I read it and hear ppl and their experiences are so similar to mine. I have so much attention and pain that are constant. I have gotten stiff and move little since endometriosis surgery and I feel BETTER not moving, than any time I moved a lot."
And he's great. He kept my list of things and said we'll start with a workup in January as to see if there's anything rheumatologic or muscular going on and then we'll look from there. I loved that. That he was fine not knowing and not being sure and starting with the obvious to work our way towards the less obvious after, if necessary.
Eye problems is described here as I describe it to my eye doctor for years, and I only get told, this can not be. Neurodivergent Autism diagnosis present as well as hypermobility syndrome with genetic EDS component VUS, Autonomia problems were present in my teen and twen years, but not any more, since my blood pressure went haywire.
Venous insufficiency, bad healing and histamine trouble are also present. Now at 50 + years old, I wonder how helpful it still is to pursue diagnosis more aggressively.
Yep.
Nutrition!! Low carb/carnivore has been a game changer. Oxalates lectins and phytates are absolute poison for many of us. But many poh pooh it because of the messed up dietary "guidelines" and fad high veg/fruit modern diet trends. Collagen, protein and cholesterol are imperative to our tissue health and brain development.
LOL, thinking everyone remembers or has the spoons (energy/fortitude) to brush twice daily - but I have improved that with a sulfate-free toothpaste (no sting) that still contains flouride, a "kid's" size toothbrush, and leaving it on the counter by the sink. Also, the routine tip is good: I use a clear pill box that's always in my bag, even at home, and set phone alarms, which reminds me to EAT, as well as take my Rx.
Omg!!! I have both. I had no idea these go together. 100% adhd makes treatment much harder as i am so disorganised and forget to do so many things. Including normal self care.
I don't know, I've been diagnosed at 32 after returning to education(I was tested and found to be ADHD before 10 years but my parents didn't want to pursue treatment), through my teen years to about 27 I was in great shape (some small slips here and there, since lockdown I've ballooned) and participated in a lot of sports. I had worked on building sites and warehouse jobs which required standing for hours, starting at one warehouse I needed to stand for 11(12 house shift) hours in a night without moving from the station.
I've always struggled with low-stress work without deadlines and constant pressure unless physically exhausting (I did progress in my fields of work to management before now). I've also always had issues with long tedious jobs, fidget a lot and pump my calves. In addition a High-risk taker ( I had to give up sports motorbikes because I can't stop myself and I will kill myself for the next adrenaline hit, fine in cars and more relaxed bikes were a lot better). Also, I'm hyper-emotional even though I know I'm overreacting to situations it's like a pressure that has to be let out, this has ruined all sorts of relationships, risked trouble with the law and disciplinaries at work.
Since taking medication (I'm only a month in) I can now complete tedious jobs like cleaning for 2 hours without taking constant or any break (I've quit jobs THAT I NEEDED only because it was too boring).
My emotional regulation is far better. My HR&BP are now lower compared to 4 weeks ago when I started (not as low as when I was in shape), though I've stopped drinking the absurd amounts of caffeine.
I don't see how I relate my problems to this blood flow illness, for most of my life I had great HR BP and blood oxygen (99 or 100%).
Not saying he/you're wrong, just trying to work out where I fit in with this.
P.S Also I'm dyslexic, found ways to compensate IE type (muscle memory) and stick to familiar fonts etc. Reading handwriting is just embarrassing.
My massive calves and I are right there with you lol. It's fascinating and terrifying how many of us seem to have these serious conditions, yet so many health professionals are totally ignorant regarding spotting it
18:44 chronic orthodontic intolerance a bad ADHD
I think there might be a connection between all of these disorders and Fragile X Syndrome.
Thank you for this insightful and very helpful presentation!! I had lots of a-ha moments because I have ADHD and hypermobility (perhaps an undiagnosed disorder.) I agree that either disorder takes a ton of energy to manage so it is very helpful to see how the symptoms of ADHD can be explained by the enormous energy it takes to get out the door each day while managing a hypermobility disorder. Time blindness is a huge problem for me requiring a lot of external cues (Post-it notes, timers, alarms, notes to self, etc.
I think there’s far more undiagnosed EDS out there than is realised
Most of the clinical cases for vascular and classic EDS are severe or thought that they have to be in order to gain diagnosis, but there are many many people with hypomobile EDS that also have symptoms. Albeit minor symptoms of classic and vascular, that wouldn’t gain a diagnosis on these two, but definitely have symptoms
With chronic OI, could someone just feel a little dizzy all the time? I feel that all the time. It's rare to feel "clear" and balanced.
I have ADHD ( evident as a toddler ) , severed tip of finger 7/8
So traumatic , I developed a nervous tic in eye , cried am , ‘ I don’t want to go to school mum’
I was such a confident child
My surgeon recommend I try ballet ( his daughters studio , excellence in elite training )
I was born to be a bendy ballerina .
And undiagnosed ADHD , what is more mindful than classical ballet ?
I was also gifted ball sports . Captain , coach , catcher softball team , age 11. I had no ‘ 21:48 syndrome ‘evident until blood noses , sweating profusely , the dizziness in ballet class , turning to left . Oh m
Edit: I figured it out. Its hypertonicity.
Can it cause really well defined calf muscles? I have no idea why my calf muscles are. That well defined. Anyone else here?
And thank you so much for this lecture. I have hEDS, dyslexia and adhd (inattentive). I have had some similar experience like PoTs but as i read more, i knew it's not that and I made this Orthostatic intolerance hypothesis to explain the situation (i had no idea of it existing or the name) and I figured it might be linked to adhd as well. Another common link i found was IBS. I'm open to discuss if needed.
I have EDS and Epilepsy but I don’t have ADHD. Could Epilepsy be a comorbidity? I have the Classical type
27:32 maybe that's why we sit with our feet up in the chair to increase blood flow from the legs 🤷♂️
I have ADHD and hyper mobility
Can you, as a physician diagnose ADHD if the symptoms can be explained by a general medical condition? Sitting on hard surfaces causes discomfort and pain which produces concentration problems. Obviously it is easier to get a psychiatric diagnosis than it is to get an HEDS diagnosis.
Well done doctor. I have suspected a correlation between the two for years. I have both Eds and Add (I’m no t hyperactive) I now understand better how they could possibly be connected. Could you suggest any other studies?
Oh I didn't know that was an actual alternate! I joked with someone on twitter abt us not ever being hyper increasingly more ADZ🧟♂️D also more high BP than low which I think is either 10 or 20% with POTS
My personal belief is that the genes responsible for EDS, ADHD and ASD are artifacts from our protohuman ancestors "resurfacing" in anatomically modern humans. (And no I don't believe that is or should be seen as derogatory)
YUP harder to do personalized Med via gene variants even than overt symptoms. It is emerging! Would have been the only good thing that could have addressed Covid therapies!! Imo
Anyone had success with TMS work for pain
Well, imo, ADHD may be expressed a little different in different people. So maybe a percentage have this correlation, but imo, not all of us.
I have Ehlers Danlos syndrome, but do not have ADHD. However, my son has ADHD he’s now a doctor in his residency for completion of medical school, but he definitely has Ehlers Danlos syndrome. It’s just not diagnosed. Could it be that hyper mobility Ehlers Danlos syndrome is just more common than it was Ever known about in the past? And now we’re just seeing it in the population more often. So, if Ehlers Danlos is more common, and ADHD is more common, then yes, you can see them together.
How is the tonsillitis and veins related bc I have those issues
I have undiagnosed ADHD and hypermobility, diagnosed pelvic congestion syndrome, tree nut allergy, curious about pots and mcas
Ahh my eyes 👀 do odd things looking at 📱 to read or watch 📺 . I can look in mirror & my eyes 👀 look funny all I can explain. I have EDS & Anxiety. Stopping here to pay attention I have ADD. Ok I have 💛 issues 1 is that I have muscle spasms that were squeezing the Coronary Artery & causing a blockage that added a Calcium Channel Blocker to my other ❤meds. Can't explain it like my Cardiologist
I have to read books tilted at a 45 degree angle. I can't read straight lines or I lose my place reading and I causes huge eye strain. I found this out in 5th grade. Now I know why.
Tapping helps?
Is that another reason why we might rhythmically tap our feet even in bed sometimes? N one foot out for temperature regulation 😊
Omg yes the one foot out from underthe covers!
I do see how OI can mimic ADHD symptoms, at least the ones you listed, and appreciate this research. However, how do you explain the large number of EDS folks who have true ADHD - that does not just cause those negative symptoms, but also has us thinking differently, with extra creativity, quick (sometimes genius) multi-track brain connections, extra energy and focus (hyperfocus) for hours on things we are interested in, and all the other "superpowers?"
Theres probably some genomic link there.
Can you please activate Russian subtitles?
If This guy studis magic mushrooms, he’s probably headed for a Nobel piece prize
So many very damaging misdiagnosis. Does my fkn head in.
That woman with physiotherapy really missed the point! You remember to do your therapy by remembering to do your therapy? And what if you just forget?
I have ADHD and I also believe that I have EDS however, I don’t fit into any category for a diagnosis of EDS
I believe that I have EDS related to low tongue posture, which has caused a malocclusion as the pressure, not being there on the upper jaw from the tongue, stunted the growth of the upper jaw & enough room to hold my tongue at the roof of my mouth, I have a very high narrow palate & as such, I mouth breath, I also believe that this is linked to, and possibly the cause of ADHD, mouth breathing
Here I am at 42, ruined 😂
We seem to have certain facial features as well.
Like?
@@enidwellness100 prominent/large eyes, small chin, thin lips, and thin nose
I think those features are more for vascular EDS.
Most people with EDS look very young for their age. This came up at an EDS conference years ago when it was held in Texas
@@Franeb747people always tell me I have a baby face. I’m 32 and people tell me I look under 25
I initially found this very interesting, but it's incredibly disappointing that Dr. Kustow also advocates for EFT tapping. Belief in pseudoscience there makes the credibility of his connections here extremely suspect. Yes, EFT has been proven effective (inconsistently), but the practice doesn't have a plausible, concrete mechanism by which it is proven to work and the basic claims behind the practice don't have any strong science behind them. The success is far more easily explained by features in common with proven, scientifically explained treatments.
It means we need to take this connection between ADHD and EDS/HSD with a grain of salt.
Don’t throw the baby out with the bath water
If you refuse possibilities and see neg you are extremely harmful to SCIENCE ludderites have a place but not YOUR DENIAL type of reverse superstition. what you can't imagine? needs paper evidence for YOU. Then suffer till some cone along.
Glutamate.