#pans/pandas/bge

[tic-loud-tic-proud]

10 Tips for people with klazomania (screaming tics)

1, and this is one that has changed my life: if you have very frequent shouting/screaming tics, DO VOCAL WARMUPS! I used to consistently lose my voice at the end of every day before I started doing this. There are plenty of short and simple warmup tutorials online- find one that works for you!

2, if you live in an apartment building, make sure to tell your neighbors. You don't need to explicitly tell them you have TS, but make sure they know you make loud sounds frequently so they're not concerned. Putting a sign on your door also works. Remember: in the USA it is illegal for landlords to evict someone solely because of a disability.

3, if you're heading off to college and plan on living in a dormitory you might want to request not having a roommate. If you are already diagnosed with a tic disorder, it should be easy to do this through your college's disability services office. If you would like to have a roommate make sure they understand your tics.

4, if you are planning on going out (to a restaurant, theme park, museum, etc.) you might want to call the staff of the location to inform them you have tics a few days before. I usually call ahead to restaurants to let them know about my klazomania and coprolalia tics and I've found that doing so makes it easier for both parties.

5, going off of 4, if you're going to a theme park or large museum and plan to suppress at least part of the time, get a map and mark off secluded places where you can safely let your tics out.

6, if you'd like you can bring a stuffed animal out in public with you: both for emotional support and to muffle the sound of loud tics.

7, if you're a middle or high school student, email your teachers to let them know about your tics. If you have moderate/severe tics it was very important to me that I gave a presentation to each of my classes at the beginning of each semester to teach them about my TS. Another accommodation that I got in high school was being allowed to zoom into my classes instead of attending in person: So on bad tic days I would stay home, and my teachers would broadcast the class over zoom for me.

8, drink lots of water and purchase a humidifier if possible. At the end of a long day drinking fluid and being in a more humid environment will help to soothe your voice. Herbal tea with honey or mild broths can also help soothe your voice!

9, have a good network of friends who understand and support you. This is no easy feat and can take years but it will have a huge impact on your quality of life. Join a support group (IRL or online) to talk to other people with tics who understand what you're going through, and find people who share your hobbies and interests!

10, remember that your tics don't define who you are! It is not your fault that you have tics, and you are not doing them on purpose. Don't feel guilty for something you have no control over. You deserve to live a happy and fulfilling life just like anyone else!

[bigticenergy1]

PANDAS? Like the animal? 🧠 🔥

Feel free to ask any questions.

[eggsrus]

I hate rage attacks. I hate emotional liability I hate suicidal thoughts I hate intrusive thoughts I hate panic attacks

I hate when my silly little head gets in such a tiz I sedate myself so I can actually cope at college for the next 4 hours it's exhausting I want to sleep over just been crying for 50 minutes and there was no sign it was stopping so naturally I took my sleep meds just so I could calm down now I'm exhausted obviously mainly I'm emotional drained. I don't think the self injury I just did is bad enough to need first aid but if someone sees it I'm gonna get another mental health referral which never helps. I'm so exhausted from this disorder u know wat I got angry about, I couldn't understand maths mainly a calculator so I got annoyed then defiant then angry then it turned into a panic attack didn't it. GENUINELY fucking exhausted with this disorder. And I'm not even diagnosed yet 😭

[its-ticsticstics]

Other causes of tics that do not come from Tourettes or a tic disorder:

-Head trauma/TBI -Parkinsonism -PANS/PANDAS/BGE -Medication reactions (Tardive Dyskinesia) -Temporal epilepsies -Degenerative brain diseases -Function Neurological Disorder

Things that DO NOT cause tics:

-Anxiety disorders -OCD -Autism -ADHD -PTSD -Any mental illness because tics are NEUROLOGICAL and come from dysfunction in the Basal Ganglia.

**DO NOT ask me for sources proving anxiety tics don't exist because you can do that YOURSELF (or look through my blog because I already have PLENTY). In fact- try and find studies to show they DO exist because you WON'T**

**DO NOT rb with with "tw tics" or you will be blocked**

[mischiefmanifold]

Hi! If you don't mind, I'd like to share some information with you (as someone who has Tourette).

Tics cannot be caused by stress! They can, however, be worsened by stressful situations and chronic stress. Many people think they can't have Tourette because they only notice their tics during especially stressful times, although this is noted in the DSM-V.

Tics can wax and wane in severity, and months can go by without a Tourettic person having a single tic (this is also noted in the DSM-V!)

Transient tics (tics that last less than a year and then go away permanently) are extremely common! If you haven't had tics before, it's very likely that you have transient tics. If you've had tics before or your tics have lasted more than a year, you probably have one of the other tic disorders.

On that note, there are six disorders that for sure cause tics: chronic motor tic disorder, chronic vocal tic disorder, provisional (transient) tic disorder, Tourette syndrome, other specified tic disorder (from my understanding, most often used for Tourettic people whose tics start when they're older than 18), and unspecified tic disorder. These disorders (at least the first four) have decades of research and information behind them. Other disorders that are often considered to include tics are FND and PANS/PANDAS/BGE, both of which have very little research and sufficient evidence surrounding the presence of tics.

Additionally, a large chunk of researchers in the area of tic disorder and other movement disorders have suggested or are gunning for a spectrum diagnosis for Tourette (like the autism spectrum) that would include all of the current tic disorder diagnoses (perhaps excluding transient tic disorder, I'm not sure). There is also discussion on raising the cutoff age to 21 or removing the cutoff age altogether.

I apologize for rambling, tics and tic disorders is a topic I'm very passionate about. If you have any questions, please feel free to send me an ask or DM!

Probably a tw but idk what to call it. Mentions of tics and tourettes

Tic update or something.

I think I have tourettes. It's just so weird. Last month I was fine, heck last week I was fine. Now I have uncontrollable ticcing.

Ahhhhh

[shellsinadune]

what a missed PANS/BGE diagnosis can look like

context: i was 12 years old, still being read as a girl. pans was not the only illness i acquired from this infection. i had a reputation for being smart, but 'lazy'; i had an adhd diagnosis but nothing else. i had recently stopped my adhd meds.

a member of the family getting sick, then the child complaining of the same symptoms days - weeks later. (they are likely also sick and are not lying)

more arguments in the household because of the child suddenly needing things done a certain way / anxiety misread as aggression.

the child spends up to an hour repeating the same thing, getting increasingly more frustrated.

the child's 'picky eating' getting worse, to the point where they stop eating meals they've always been fine with or even enjoyed. snacking may continue, this does not mean they don't have a problem with food.

the child may become scared of or develop a phobia of certain foods.

severe mood swings. if someone is too depressed to get out of bed, this is not typical for their age. telling them to 'get over themself' does not tend to work.

the child refuses to go to school and reacts with fear at the sight of the building.

the child may 'give up' at school, and when asked, may reply that they don't know why or that they are actually still trying.

skills such as tying shoes or riding a bike may be forgotten.

the child's memory gets sharply and significantly worse. they seem to miss important dates and deadlines.

episodes where the child stares off into space or rolls their eyes upwards with varying amounts of rhythmic body movements such as mouth moving, arms twitching, head shaking, etc. the child does not respond to their name or anything else and [for some fucking reason don't even ask :/ ] is viewed as insolence or ignoring the adult.

the child, who was previously hyperverbal, doesn't speak for hours or days.

the child becomes dehydrated because, they say, they keep needing the toilet and their teachers don't allow them to leave so they have to drink less.

pre-existing "overreactions" to sensory stimuli get worse; exposure does not help.

the child claims to see and hear things; writes letters to you that someone hid cameras in their bedroom. (may be dismissed as attention seeking)

night terrors come back after having been gone for years.

the child flies into uncontrollable rages over nothing; seems to just be angry at the world and looking for something to direct it at.

the child is picked on in a science class when it is taught that dilated pupils are a sign of attraction; it is assumed the child is attracted to everybody because their pupils are always dilated.

so if you're wondering how anybody could miss something so drastic, here's what it was blamed on:

my age ('all 12 year olds are difficult' etc)

adhd ('if you just stayed on your medication this wouldn't be happening')

character flaws ('they're just rude/dramatic/whiny/not applying themself/immature/lazy')

school refusal, but in a character flaw way, not a 'this kid needs help' way

[pandaspansawareness]

BGE/PANDAS/PANS is often debilitating.

People may lose the ability to perform daily tasks, experience torturous psychiatric symptoms, and terrifying neurological changes.

Early diagnosis and intervention is the best thing to have. Awareness is vital.

[bigticenergy1]

One of my biggest pet peeves is people acting annoyed by MY disabilities. I was sitting at the dog park ticcing away like usual and Kathy (older lady, regular who I’ve known for several years) goes “did you take your medication today?” and I told her “yes.” Which is true but treatment doesn’t make symptoms disappear. Then, she was like “I haven’t seen you ticcing like this in a while.” so I told her that I hadn’t even seen her for a while (also true) —

A few minutes later, I pulled out my weed pen and asked Kathy if she wanted to smoke with me. and She replied “if you quit popping.” I have a mouth popping tic, which, I admit is annoying but Jesus man, I’m so sorry you have to deal with my disability for AN HOUR!

I’m already constantly trying to convince myself that people actually enjoy my company like do you have to??

[bigticenergy1]

I filmed a video explaining dystonia and dystonic tics. Anyone interested?

[bigticenergy1]

The difference 24hrs can make with chronic illness ❤️‍🩹

Remember, symptoms fluctuate. Disability can look very different for one person even day to day.

(I mention my tic frequency because I barely tic at all when I’m particularly unwell.)

[bigticenergy1]

A little autoimmune disease comedy

My friend who has PANS and I have been laughing about this so I had to

[bigticenergy1]

What is catatonia? 🧠 🔒

“A neuropsychiatric syndrome characterized by abnormal movements and withdrawal” - National Library of Medicine.

In a catatonic state, a person may be “frozen” in an unnatural position and unable to move or communicate.

catatonia is often caused by mental illnesses like schizophrenia, PTSD and dissociative disorders but for me it’s caused by PANDAS (autoimmune - basal ganglia encephalitis). The “N” in PANDAS stands for neuropsychiatric.

(Basically, my immune system attacks healthy cells in the part of the brain that controls, speech, movement and emotional regulation.)

My experience with catatonia:

Depersonalization and derealization are also a common PANDAS symptom and for me, catatonia often comes with DP/DR episodes. I will go from a dissociative state into a catatonic one. My muscles become rigid with dystonia and I’m unable to move or communicate, but remain somewhat conscious. Usually in a dream-like state. Sometimes I have hallucinations.

There also seems to be a connection with seizure activity for me. The still, above on the left, preceded a tonic clonic seizure.

Why am I sharing this?

Because I experienced these terrifying symptoms for over a decade before I found out what was causing them.

[bigticenergy1]

People need to understand that folks with autoimmune diseases don’t just not want to be around sick people because we will get whatever they have worse/longer but (also) because developing ANY infection/source of inflammation will exacerbate the symptoms of the autoimmune disease itself!

I catch your cold AND I have seizures and hallucinations lol

[neurosky]

Encephalitis can make you do such weird things istg. I've been in a flare the past few days (happens every spring so it's nothing new), and today I just... fully bit into a hard boiled egg with the shell fully intact??? I literally have no idea why. And then I ate it with no seasoning or salt or anything. Like alright I guess?? 😭

[bigticenergy1]

I’m in a PANDAS/BGE flare and the last two days have been really difficult but I still cleaned around my house, took care of my pets and went to the dog park. I push through A LOT because I feel like shit so often, I wouldn’t get anything done if I didn’t.

I cancelled plans with a friend for later and he basically said “my time is sacred. If you don’t hangout today, you don’t care about our relationship.” I didn’t say this but reality is, on top of my Tourette’s and Autism, my immune system is attacking my brain and my body’s connective tissue. And to have the audacity to talk shit about the treatments (pharmaceutical medication, not wheatgrass and turmeric) that give me some quality of life 😡 fuck him. He can find an ables friend if he wants one.

[bigticenergy1]

What a little brain inflammation can do 🧠 🔥