Discover and read the best of Twitter Threads about #epilepsy

Most recents (24)

#EpilepsyTwitter, I have a question for you! Does anyone ever experience a feeling like an electrical pulse, or what can feel like an electrical jolt, but that isn’t accompanied by a jerk? Not a myoclonic jerk you would normally associate with #epilepsy, but a similar feeling >
> without the jerk itself, and no micro loss of consciousness. I usually feel it in my forearms or legs, but sometimes in my lower back. I described it to the nurse who runs the #epilepsy clinic, she hadn’t heard of it before. I think she is wondering if it it not epileptic, >
> but more anxiety based. As I’ve been writing this Tweet I’ve had a small one in the top of my arm and in the side of my back. Sometimes it can be accompanied by feeling sleepy. No loss of consciousness though. If I had to describe what I thought it was, it feels like >
Read 4 tweets
Today is #purpleday. I was diagnosed with #epilepsy at the age of 28 after having simple partial seizures for years. I had tonic-clonic seizures -- what used to be called grand mal seizures -- in my sleep, and never knew.
This was diagnosed in a very classy way -- I woke up with a bruised forehead and a broken toilet seat. Things like stroke and brain cancer had to be eliminated. I had just moved to NYC and started writing for @CBSRadio. Bad timing.
There are more than 40 different types of seizures. They are very personal. They have different 'triggers'. Mine are triggered by exhaustion. I had to stop working overnights, and I avoid early mornings, which is difficult in a business that starts at 3am and goes all night.
Read 17 tweets
We get asked about this a lost on #theNewsAgenda, so this may help some. A thread on #epilepsy, the #vaccination, and what to do when you get left off the priority list. 1/
I am in my mid-40s. I'm pretty healthy. I also have epilepsy. mirror.co.uk/news/uk-news/e… 2/
A while ago my mum, who'd read something about the neurological aspects of #COVID19, said to me: "You should be among the first to get your shot." I didn't feel particularly at risk, so I went mmm, yeah, right. 3/
Read 16 tweets
Thread, a reflection:
It's hard to describe how often throughout the work day I'll surprise myself by how 'on it' I am.
Before #keto, while on massive doses of #epilepsy meds, I would sit in a meeting, take exhaustive notes, yet struggle to recall action items a mere hour later.
I would have multiple projects running simultaneously and struggle with remembering which deliverables were for what campaign, the resources assigned - people would ask me questions and I would have to dig through pages of notes to come up with the answer.
I regularly suffered from impostor syndrome. I didn't feel competent in my work, especially when running meetings. My colleagues had it so together and I felt like such a mess, unable to recall even the most high-level details.
Read 8 tweets
New publication: Structural Brain Network Abnormalities and the Probability of Seizure Recurrence After #Epilepsy Surgery. With @_Nishant_Sinha @yujiang_wang @sjoerdbvos @DrGavinWinston and others in Neurology @GreenJournal doi.org/10.1212/WNL.00… Image
Great editorial on the study from @katedavis12341 and @VickyLMorgan here: doi.org/10.1212/WNL.00… Image
Further info on the Neurology podcast: open.spotify.com/episode/1Cv2Fe…
Read 4 tweets
1/ I had not even heard about Sudden Unexpected Death in #Epilepsy (SUDEP), until last week, and now I've been seeing it a lot...concerning that this report identified a rise in the number of maternal deaths occurring in the UK & Ireland 2016-18 from SUDEP
epilepsy.com/learn/early-de…
2/ But Why?
- Low proportion whose medications were optimized either before or during pregnancy

- Women were also stopping medicines either of their own volition or on the advice of a health professional, or receiving inappropriate medications, simply because they were pregnant
3/ It is unacceptable for women to receive a lower standard of care simply because they are pregnant.

Clear & rapid pathways of access to neurology and/or epilepsy teams with expertise in caring for women before & during pregnancy need to be established. @janevandis @doctorjenn
Read 4 tweets
#MedicalNicotine

348,601 "ever-#snus users had about 60% lower Parkinson's disease risk compared with never-snus users."
academic.oup.com/ije/article/46…

30,000 British doctors followed for 60 years: "current smokers at baseline had a 30% lower risk of PD."
n.neurology.org/content/neurol…
#MedicalNicotine

Nicotine is beneficial for people with #ADHD. Research on adults and adolescents with ADHD shows that nicotine patches improve focus and attention, and reduce hyperactivity & impulsivity.
#MedicalNicotine

Nicotine reduces symptoms of Alzheimer's disease (AD).
d1wqtxts1xzle7.cloudfront.net/48014043/bf001…
Read 11 tweets
ADHD: "Nicotine ...may have properties similar to stimulant medications (e.g., Ritalin) used to treat ADHD. [It] may increase attention and reduce hyperactivity & impulsivity."
clinicaltrials.gov/ct2/show/NCT00…
#MedicalNicotine #ADHD #ADHDAwareness #Autism #Neurodiversity #Neurodivergent
ADHD: "The positive relation between ADHD & nicotine dependence is best explained by the self-medication hypothesis. This hypothesis ...is supported by ample evidence."
tandfonline.com/doi/pdf/10.108…
#MedicalNicotine #ADHD #ADHDAwareness #Autism #Neurodiversity #Neurodivergent
Read 5 tweets
Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
It’s comics time again! Glad to see our manuscript out in @NatureComms where we describe neuronal subtypes affected in temporal lobe #epilepsy and reveal a neuronal subtype-specific molecular phenotype.

nature.com/articles/s4146…

Here's a brief explanation of our findings 1/10 Image
We used the surgically excised temporal lobe (TL) cortex from 9 individuals with epilepsy and compared against 10 non-epileptic controls. MRI of the TL showed epilepsy-associated abnormalities.
We processed >110,000 cells from these samples for #snRNAseq 2/10 Image
We found that the largest transcriptomic changes occur in distinct neuronal subtypes from several families of principal neurons (L5-6_Fezf2 and L2-3_Cux2) and GABAergic interneurons (Sst and Pvalb), whereas other subtypes in the same families were less affected
3/10 Image
Read 11 tweets
#PARENTS: If kids wet the bed over age 5, they might be at higher risk for the onset of #migraine. If they're over 5, peeing while sleeping AND have #migraine or #headache, the bedwetting is likely neurological, not behavioral. /thread ncbi.nlm.nih.gov/pmc/articles/P…
The relationship bwn #migraine & #sleep disorders is well known: sleepwalking, sleep terrors, insomnia, and, in kids, betwetting over age 5.

The same abnormalities in brain structure & function that make migraine also make sleep disorders.
Migraine & sleep disorders share "common pathophysiological substrates. In particular, the increased prevalence of #migraine in patients with #sleep disorders is associated with the hypothalamus regulation of circadian rhythm" (Ferrara 2016).
Read 15 tweets
1) Absence Seizures::
Age 5 years to 10 years, history of febrile seizures in only significant.

Simple TAS:
Sudden onset of impaired Consciousness with blank facial stare without other motor, behavioral phenomenon.
Complex TAS:
Accompanied by motor, behavioral or Autonomic
2) phenomenon.
Clonic... May be subtle, like eye-blinking, Nystagmus, jerk of arms.
Tone... Extension or flexion of trunk in case of contractions(increase tone) , head nodding or dropping objects in case decrease Tone.
Automatism... Rubbing face or hand, licking lip, chewing,
3) grimacing, scratching.
Autonomic...Pallor, Flushing, salivation, sweating.

Atypical Absences::
Less abrupt onset or cessation, more changes in tone, long duration than TAS, associated with other seizures types & mental Retardation, usually begin before age 5 years,
Read 12 tweets
1/3

Perhaps this storm is passing?

I'd like to find the other side of these past 3 weeks.

I've had the most serious relapse in 9 yrs of having #Epilepsy. I've had more #seizures in 3 weeks than 9 yrs combined.

A new high of 4 in 1 day.

I've been very sick. Very scared. ++ Image
2/3

I've had to finally accept that I'm #epileptic. That when my meds aren't working I get very sick and my #seizures are near daily.

I've had to fundamentally change some things these past 3 weeks. What I was doing wasn't working.

Thanks to those who've checked in with me ++ Image
3/3

The reality is that #Epilepsy can easily kill me.

These 20+ #seizures I've had in 3 weeks, any 1 of them could have taken my life.

And I'd be gone.

It's been 4 days since my last #seizure. The longest I've gone since this storm showed up.

Come on brain, we got this. Image
Read 3 tweets
1) GEFS plus (Genetic Epilepsy with Febrile Seizures plus)
Mildest Benign Form: Normal EEG + IMAGING
1:Simple Febrile Seizures
2:Febrile Seizures Plus
Severe Form: Abnormal EEG + IMAGING
3:Dravet Syndrome
4:Doose Syndrome
2) GEFS plus is a genetic syndrome, Defect in 4 Genes, SCN1A, SCN1B, GABRG2, GABRD. Other seizures with FS Or FS-plus are Absence, atonic, myoclonic, and partial.
FS:
Typical convulsive seizures, 6month-6years, with fever 38c' or greater.
3) FS-plus:
Mild form of generalized epilepsy, different presentations.
1:Febrile Seizures continues past 6 years which is upper limit of FS, than decrease gradually.
2:Febrile Seizures and Afebrile seizures upto typical age for Febrile Seizures.(6 months to 6 years).
Read 10 tweets
Mind boggling case
13-year old girl
5 - 6 years on #ayurvedic treatment (shown below) for #Epilepsy. #Ayurveda promised no more #seizure.
Now jaundice, fluid in abdomen, dark pigmentation
#livertwitter #MedTwitter #MedEd #Science #ScienceMatters #pathology #MedicalStudent
1/4
#liver #biopsy
Diagnosis: severe #alcohol #hepatitis and underlying #incomplete septal #cirrhosis (rare, #hepatoportal sclerosis) - 2 diseases in one liver! #radiology
WHY DID THIS HAPPEN?
See retrieved #Ayurveda #drugs analysis results.
#pseudocience
2/4
#Chemicals & #Toxicology analysis
#alcohol content - total 26.17 % v/v
#Arsenic content - total 2461.367 mg/kg
Single highest #Herbal #medicine - Arsenic was 1982.44 mg/kg
Two #ayurvedic drugs also contained #CLONAZEPAM - a modern medicine with anti seizure property😞
#ayush
3/4
Read 4 tweets
We frequently say that 1️⃣ in 2️⃣6️⃣ people in the US will develop #epilepsy in their lifetime. This is a staggering statistic that highlights the importance of #EpilepsyAwareness, research, and better treatments...

But how did we arrive at this number? 🤔 #MedTwitter #tweetorial
2)Incidence is the number of new cases over some period of time - incidence of epilepsy being highest in the very young and very old.

Prevalence is the number of active cases within the total population at risk - the statistic of 1 in 100 people have active epilepsy at any time.
3) within those 100 people may be some that had epilepsy in the past that has remitted or some that have not developed epilepsy yet, but will. Only 1 has active epilepsy and is counted. So what is the likelihood of being personally impacted by epilepsy in a lifetime?
Read 13 tweets
My @dogs4EU, like all of us are getting old. They need medicines for debilitating conditions of old age. #arthritis #Pain #epilepsy drugs. Yesterday, I found that my vet couldn’t find my Bonnie’s medicine. Eventually, found a new supplier which cost me £15 more. #AnimalWelfare
My @dogs4EU are my family. @SODEMAction @No10Vigil @wooferendum knows them. They were by my side. Now they are frail, I won’t let them suffer. But what if medicines run out? Are pet owners and farmers aware that #NoDealMeansNoMeds due to customs delays. #Brexit raised cost.
How many pets will suffer, be abandoned or even put to sleep as owners can’t/won’t buy their life saving medicines? My vet is very upset. Double whammy of #COVID__19 and No Deal will cause millions of #animals to die! Avoidable deaths of innocents! @DogsTrust is aware. Are you???
Read 4 tweets
So I’ve decided to #interview many of the researchers/MDs I collaborate with or know as friends. That’s b/c most have an incredible base of knowledge and unique skillsets that need to be shared with a wider audience!
2/ I started w/ Dharam Ablashi, who co-discovered the #virus human #herpesvirus 6 (HHV6) along w/ Robert Gallo in the 1980s. Here is the #interview, which ended up documenting one of the most fascinating + informative conversations I’ve ever had: microbeminded.com/2020/06/28/int… Image
3/ Overall, Dharam and I talked abt his own extensive research on #HHV6, challenges he faced in moving the work forward, plus his opinion on key studies that clarify the pathogenic role of HHV6-A + HHV6-B in neurological disorders such as #MS, #epilepsy, #ME/CFS and #Alzheimer’s
Read 3 tweets
How many families have a loved one coping/fighting #Cancer #epilepsy, needs #dialysis or insulin for #diabetes? Due to #COVID2019 there’s 2.4m backlog, a 10m waiting list expected through no deal. Shortage/delay of medicines from the EU would be the last straw. #No2DeathByNoDeal
Here is the full list of medications which could be affected by a no-deal Brexit, according to E-Surgery:

Acamprosate (Campral) treats alcohol dependence
Aciclovir (Acyclovir) treats herpes, simplex virus infections, chickenpox,shingles
continued
Read 21 tweets
ST VITUS, MARTYR; FEAST JUNE 15

~thread~
1. St Vitus appears in early lists of Christian martyrs, and probably died during the persecution of Diocletian, which reached its climax in 303.

He is a patron saint of Prague, actors,

#StVitus #Christianity #FourteenHolyHelpers Image
2. and his intercession has been invoked against snake bites and sleeplessness. Chiefly, though, he has been associated with St Vitus’s Dance.

Historically this term has been used to describe nervous disorders involving rapid, jerky, involuntary movements;
#insomnia #sleep
3. it has also been applied to epilepsy. Today, St Vitus’s Dance is more austerely defined as Sydenham’s Chorea, a disease which induces grimacing and jerking in children and pregnant women, and which is often linked to rheumatic fever.

Tradition relates that Vitus
#epilepsy
Read 9 tweets
Hey followers - there's over 3000 of you but we don't know each other very well.

For years now I've been sharing issues ranging from #disabilityrights, being #autistic in an #ableist society, to #vaccines, #MMIW, #alttext, #Dyslexia, #dyspraxic, #Epilepsy, #racism, #PTSD,
#depression, #domesticabuse being the cores of what I share and lands in your timelines.

I've recently shared with you all that I'm in a process of reclamation - my culture, my identity, my gender, my sexual preferences - all of it.

So now you know my skin is white passing
but I am also part #Aboriginal and that matters deeply to me and I won't be erased anymore.

I am #pansexual. I don't need you to be of any particular gender to be attracted to you.

I am a #nonbinary #femme. But I also lean heavy in masc traits sometimes too.

I am #disabled
Read 8 tweets
THE PROMISED NEUROLOGY FELLOWSHIP THREAD: I’ve taken it upon myself to hype up neurology despite being under the tutelage of medicine for the next year. Neurology gets left behind when students resolve never to live in a world where ‘dysdiadochokinesia’ is used unironically.
Disclaimer: This thread is NOT comprehensive. Neurologists practice in vast spectrums that cannot be conveyed here. This is simply meant to inform prospective applicants about the options within the field of neurology, and hopefully, to entice them to explore something(s) new.
1/ #movementdisorders (MD)- starting out this thread with a backslap to naysayers who still make the tired claim that “there’s no instant gratification in neurology.” WRONG!
Read 48 tweets
From Times: “Some 2.4 million patients have missed out on cancer tests and treatments due to a backlog caused by the coronavirus pandemic, charities have said.
According to Cancer Research UK 2.1 million patients are” awaiting screening appointments for breast, cervical and
“bowel cancer and another 290,000 have not had referrals for tumours. It is also estimated that about 21,600 patients have had surgery, chemotherapy or radiotherapy postponed in the past nine weeks.
Sarah Woolnough, policy chief at Cancer Research UK, warned that hospitals faced“
a “huge backlog to clear”. She told the Daily Mail: “It’s a massive backlog of services and treatment to deliver. It’s absolutely huge, it’s thousands and thousands.”
A No Deal #Brexit will make backlog even worse. Add #diabetes #epilepsy #kidney patients to the list= Seismic!
Read 6 tweets

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