#Neurological disorder

[thelastwhimzy]

i really wish that ehlers-danlos syndrome wasn't basically just thought of as the "bendy" disorder. firstly, there are more than 13 types of eds, and they all have varying relations to and degrees of hypermobility. secondly, eds are a collection of congenital connective tissue disorders - connective tissue makes up a vast majority of your body and, because of this, eds, hsd, and other congenital connective tissue disorders like loey-dietz, marfans, stickler syndrome, and osteogenesis imperfecta are multi systemic.

having eds or another connective tissue disorder is SO much more than just some flexibility and it's especially frustrated that they're often thought of solely in relation to that one aspect of them because it leads a lot of people down the path of misdiagnosis.

as an advocate and educator regarding ctds and especially eds, i have spoken to SO many people who simply wrote the possibility of them having a ctd like ehlers-danlos off simply because they aren't flexible. it's such a dangerous misconception and really frustrating to see especially given the fact that the muscles of hypermobile people often overcompensate to make up for joint laxity, which can actually lead to a lack of flexibility/high tone/spasticity

so yeah, tl;dr: if you have a bunch of multisystemic symptoms that seem largely unconnected, look into connective tissue disorders. they're much more common than people think, frequently go under the radar, and can really wreck havoc on your body - ESPECIALLY when you aren't aware that you have one

[headpainmigraine]

If there's anything I'd like people to take away from this Migraine Awareness Month its

that a migraine isnt a severe headache

It's a complex neurological disorder

Its a cascade of neurological activity in an over sensitised brain, the main symptom of which is usually a severe headache.

It is disabling, especially when it's chronic (15 days a month, at least 8 of those with migrainous symptoms, for over 3 months)

[nightmaretour]

So I got bored and made a server for people with brain damage. Idk how this is going to go with how Tumblr behaves towards brain damage and anything we try to have for ourselves, but it's worth a shot right? It's about time we had some form of unified community.

This server is specifically for people with physical brain damage.

Brain injuries of any kind and cause are welcome! TBIs and ABIs (neurodegenerative diseases if you want to classify yours that way, infection, stroke, drug overdose, birth complications, all are welcome!) of any severity belong here equally. This is intended to be a safe and welcoming space to connect with each other, share experiences and advice, and feel a little less alone with our disability.

No, depression, PTSD, ADHD, etc. are not brain damage. Not everything that affects your brain is brain damage. There are plenty of specific and nonspecific spaces for all manner of neurodivergencies, we deserve a space of our own. If you don't have physical brain damage, this particular space isn't for you and that's okay. I will not tolerate arguments about this, neither on Tumblr nor on the server.

🏳️‍⚧️This server is trans inclusive, terfs and other transphobes are not welcome.

🇵🇸This server is anti-genocide and supports a Palestine free from war and violent occupation.

EDIT 8/6/2025: Updated with a new invite link!

EDIT 22/6/2025: Updated the invite link again, this one shouldn't expire (hopefully)

[wheelingwithgrace]

Can we take a minute to talk and acknowledge a specific shitty part about the US healthcare system.

Medication.

We all know insurance is shit when it comes to medical debt, but paying for medications is awful.

I mean life saving medications.

People are dying because they cannot get the medications they need, the biggest one I hear people talk about is things like Insulin.

I am struggling to get my seizure rescue medication. Without insurance it is over $700.

I have been going into status epilepticus during my last 2 times having seizures.

I no longer have rescue medication. My pharmacy cannot fill my prescription until my insurance allows it. If I have another episode I will need to call 911 which further leads me into a rabbit hole of medical debt.

This should not be happening. Myself and everyone else should not be having to fight for life saving medications.

I honestly have no idea what I’m going to do without this medication. It’s terrifying.

[wheelie-sick]

the neuro rehab clinic I'm in is very good at convincing people to use wheelchairs. I've only seen one person who is desperately in need of a wheelchair and doesn't have one

[nebulae-d]

I need people to stop telling me that what im experiencing isnt what's im experiencing because it makes them feel more comfortable.

if i tell you my disability that causes weakness in my chest and lungs with flare-ups (that means I struggle with breathing, difficulty clearing my chest and throat, feeling oxygen starved, pain with breathing and in general like my lungs are being crushed) is causing me to feel these symptoms, dont tell me its caused by something small or miniscule. dont downplay what im feeling and tell me that no, it isn't the disability causing it.

just because my disability makes you uncomfortable or you do not want to deal with the thought process of this being how I live forever, does not mean it isn't how I live. it isn't your life or your comfort, it is mine. take me seriously or shut the fuck up and get out.

you think it's scary when I tell it to you? imagine it happening to you.

[nark-my-words]

this is very angry, but i really just want to yell somewhere outside of just the narcolepsy tags bc yknow I'm physically disabled!!! it sucks!!!!

another issue with narcolepsy!!! is that the media and mainstream depictions of it are so fucking insultingly simple and do NOTHING to represent the devastation it can cause and how physically disabling it is.

Sleep is something fundamental to health. if your sleep is disordered and impaired and you aren't getting enough good restorative sleep, you are going to suffer long term health impacts and horrible quality of life. you have to be a fucking ambassador with an encyclopedic knowledge of how it's not the funny "fall asleep when emotional disorder" (that's called cataplexy and it isn't falling asleep, it's muscle weakness and a loss of muscle control. it's also only in type 1 narcolepsy) or the "falls asleep anywhere and you're refreshed :) disorder" (for many people, it's not being "refreshed", it's just Not Being As Tired and it doesn't last very long) or the simple "it means you're sleepy all the time"

it's often severe sleep cycle disturbances during both night AND day and feeling tired all. the. time. because your brain can't properly regulate sleep cycles so you can't get enough deep sleep. ever.

imagine never getting enough sleep fucking ever. It doesn't matter how MUCH you sleep, because your brain can't moderate your sleep cycles properly and you can't go into the stages of sleep that your brain and body need. imagine the impact that would have on your brain and body. imagine your own brain literally not physically fucking working right. imagine the full body, unrelenting fatigue.

it's a severe neurological and neuroimmune (at least N1 usually is neuroautoimmune) disorder and it's actually severely underdiagnosed because not enough people have access to the specific kind of sleep studies they (insurance companies tbh) require to diagnosis it

when are people going to realize we are fucking suffering and stop overwhelmingly handwaving or treating narcolepsy like a punchline or funny quirk?

everyone who thinks it's cute or quirky actively contributes to how horribly we are treated and how little we are taken seriously unless we sit there with essays that spoonfeed how critical proper sleep cycling is to longterm health and quality of life.

even then, why should anyone care about us physically? all that matters is that we're considered productive under capitalism. doesn't matter what severe health issues you continue to stack up

stimulants and wakefulness promoting agents are the first line treatment and they do fucking NOTHING to tackle the sleep cycle issues at night. in fact, they often make insomnia even worse. nobody gives a shit about narcoleptics' physical health as long as they're capable of being productive and "awake" and it's utterly repulsive.

(This all also applies a lot to idiopathic hypersonmnia, too, which shares a lot of overlap w narcolepsy type 2)

also ppl w [insert mental illness or neurodevelopmental disorder here] who want to compare it to a neurological sleep disorder: don't you even fucking Start. you know full well I'm talking about different things.

[2swanned]

average narcolepsy experience + first thing with new sona

i don’t usually do stuff like this but i thought it’d be funny

volume warning ig

[a-totally-reasonable-username]

For a few months now i've been having allergic reactions to unknown or no triggers that keep increasing in severety and frequency and it got to the point where my mom and i womdered if having an epi pen for the worst case scenario might be good. Then i remembered that my body absolutely cannot handle adrenaline. I'm on meds that help with norepinephrine and since then i don't get seizures from being excited anymore. My body naturally reacts to adrenaline spikes with seizures. I do not have any official medical diagnosis for this.

If i were to have a severe allergic reaction that requires an epi pen, i would start seizing pretty much immediately upon administration. That seems like something i should be able to warn medical professionals about, so they don't think the seizure is due to the allergic reaction.

I really wish getting this medically acknowledged would take about five less specialists and about three years less time it drives me mad sometimes

[neopronouns]

flag id: a flag with 5 stripes, with the third being twice the size of the rest. they are blue-black, indigo, soft blue, indigo, and blue-black. within the larger third stripe is an uneven zigzag stripe, which is dark red-orange. end id.

banner id: a 1600x200 teal banner with the words ‘please read my dni before interacting. those on my / dni may still use my terms, so do not recoin them.’ in large white text in the center. the text takes up two lines, split at the slash. end id.

a restless leg syndrome flag, both for a request on @mogai-headcanons and for myself!

the regular stripes represent various moments of restfulness during which rls is typically experienced — when one is falling asleep/trying to sleep, lying down, sitting down to relax, etc. — and the jagged stripe in the middle represents the suddenness of restless leg! i used a zigzag stripe to represent energy (and also electricity, which i associate my rls with) and made it orange, a color that can represent energy.

tags: @radiomogai, @dragonpride17, @mad-pride

dni link

[laughingsquid]

Revolutionary Brain-Computer Interface Lets Man Who Lost His Voice to ALS Speak Again In Real Time

[valcaira]

I am... still not over the fact that one day I woke up with my right side suddenly paralyzed. Without any warning. It's been several weeks now without any improvement. I want to cry. I want to yell and scream. I'm scared. This is fucking terrifying! Who knows what'll happen next? The doctors didn't find an organic cause thus dismissed me so fuck me I guess!

Just like that! One half of my body! Gone! I still can't fucking cope with this. And everyone around me acts like it's not a big deal. Fucking hell.

[underneaththatblackblanket]

"The 200+ Symptoms of Fibromyalgia"

(Note: Some symptoms may overlap)

GENERAL

1. Activity level decreased to less than 50% of pre-illness activity level

2. Cold hands and feet (extremities)

3. Cough

4. Craving carbohydrates

5. Delayed reaction to physical activity or stressful events

6. Dryness of eyes and/or mouth

7. Edema (Oedema)

8. Family member(s) with Fibromyalgia

9. Fatigue, made worse by physical exertion or stress

10. Feeling cold often

11. Feeling hot often

12. Frequent sighing

13. Heart palpitations

14. Hoarseness

15. Hypoglycemia (blood sugar falls or low)

16. Increased thirst

17. Low blood pressure (below 110/70)

18. Low body temperature (below 97.6)

19. Low-grade fevers

20. Night sweats

21. Noisy joints – with or without pain

22. Poor circulation in hands/feet

23. Profuse sweating

24. Recurrent flu-like illness

25. Shortness of breath with little or no exertion

26. Severe nasal allergies (new or worsening allergies)

27. Sore throat

28. Subjective swelling of extremities – (feels swollen Bu can’t find anything)

29. Sweats

30. Symptoms worsened by air travel

31. Symptoms worsened by stress

32. Symptoms worsened by temperature changes

33. Tender or swollen lymph nodes, especially in neck and underarms

34. Tremor or trembling

35. Unexplained weight gain or loss

PAIN

36. Abdominal wall pain

37. Bad hip pain

38. Burning Nerve Pain

39. Chest pain

40. Collarbone pain

41. Diffuse swelling

42. Elbow pain

43. Exacerbated Plantar arch or heel pain

44. “Growing” pains that don’t go away once you are done growing

45. Headache – tension or migraine

46. Inflamed Rib Cartilage

47. Joint pain

48. Lumpy, tender breasts

49. Morning stiffness

50. Muscle pain - widespread

51. Muscle spasms

52. Muscle twitching

53. Muscle weakness

54. Pain that ranges from moderate to severe

55. Pain that moves around the body

56. Paralysis or severe weakness of an arm or leg

57. Restless Leg Syndrome

58. Rib Pain

59. Scalp Pain (like hair being pulled out)

60. Sciatica-like pain

61. Tender points or trigger points

62. TMJ syndrome

63. “Voodoo Doll” Poking Sensation in random places

NEUROLOGICAL

64. Blackouts

65. Brain fog

66. Carpal Tunnel

67. Feeling spaced out

68. Hallucinating smells

69. Inability to think clearly

70. Lightheadedness

71. Noise intolerance

72. Numbness or tingling sensations

73. Photophobia (sensitivity to light)

74. Seizures

75. Seizure-like episodes

76. Sensation that you might faint

77. Syncope (fainting)

78. Tinnitus (ringing in one or both ears)

79. Vertigo or dizziness

EQUILIBRIUM/PERCEPTION

80. Bumping into things

81. Clumsy Walking

82. Difficulty balancing

83. Difficulty judging distances (when driving, etc.)

84. Directional disorientation

85. Dropping things frequently

86. Feeling spatially disoriented

87. Frequent tripping or stumbling

88. Not seeing what you’re looking at

89. Poor balance and coordination

90. Staggering gait

SLEEP

91. Alertness/energy best late at night

92. Altered sleep/wake schedule

93. Awakening frequently

94. Difficulty falling asleep

95. Difficulty staying asleep

96. Excessive sleeping

97. Extreme alertness or energy levels late at night

98. Falling asleep at random and sometimes dangerous moments

99. Fatigue

100. Light or broken sleep pattern

101. Muscle spasms/twitches at night

102. Narcolepsy

103. Sleep disturbances

104. Sleep starts or falling sensations

105. Teeth grinding - "Bruxism"

106. Tossing and turning

107. Un-refreshing or non-restorative sleep

108. Vivid or disturbing dreams/nightmares

EYES/VISION

109. Blind spots in vision

110. Eye pain

111. Difficulty switching focus from one thing to another

112. Frequent changes in ability to see well

113. Night driving difficulty

114. Occasional Blurry vision

115. Poor night vision

116. Rapidly worsening vision

117. Vision changes

COGNITIVE

118. Becoming lost in familiar locations when driving

119. Confusion

120. Difficulty expressing ideas in words

121. Difficulty following conversation (especially if background noise present)

122. Difficulty following directions while driving

123. Difficulty following oral instructions

124. Difficulty following written instructions

125. Difficulty making decisions

126. Difficulty moving your mouth to speak

127. Difficulty paying attention

128. Difficulty putting ideas together to form a complete picture

129. Difficulty putting tasks or things in proper sequence

130. Difficulty recognizing faces

131. Difficulty speaking known words

132. Difficulty remembering names of objects

133. Difficulty remembering names of people

134. Difficulty understanding what you read

135. Difficulty with long-term memory

136. Difficulty with simple calculations

137. Difficulty with short-term memory

138. Easily distracted during a task

139. Dyslexia-type symptoms occasionally

140. Feeling too disoriented to drive

141. Forgetting how to do routine things

142. Impaired ability to concentrate

143. Inability to recognize familiar surroundings

144. Losing track in the middle of a task (remembering what to do next)

145. Losing your train of thought in the middle of a sentence

146. Loss of ability to distinguish some colors

147. Poor judgment

148. Short term memory impairment

149. Slowed speech

150. Staring into space trying to think

151. Stuttering; stammering

152. Switching left and right

153. Transposition (reversal) of numbers, words and/or letters when you speak

154. Transposition (reversal) of numbers, words and/or letters when you write

155. Trouble concentrating

156. Using the wrong word

157. Word-finding difficulty

EMOTIONAL

158. Abrupt and/or unpredictable mood swings

159. Anger outbursts

160. Anxiety or fear when there is no obvious cause

161. Attacks of uncontrollable rage

162. Decreased appetite

163. Depressed mood

164. Feeling helpless and/or hopeless

165. Fear of someone knocking on the door

166. Fear of telephone ringing

167. Feeling worthless

168. Frequent crying

169. Heightened awareness – of symptoms

170. Inability to enjoy previously enjoyed activities

171. Irrational fears

172. Irritability

173. Overreaction

174. Panic attacks

175. Personality changes –usually a worsening of pervious condition

176. Phobias

177. Suicide attempts

178. Suicidal thoughts

179. Tendency to cry easily

GASTROINTESTINAL

180. Abdominal cramps

181. Bloating

182. Decreased appetite

183. Food cravings

184. Frequent constipation

185. Frequent diarrhea

186. Gerd-like Symptoms

187. Heartburn

188. Increased appetite

189. Intestinal gas

190. Irritable bladder - "Angry Bladder Syndrome"

191. Irritable bowel syndrome - IBS-C, IBS-D

192. Nausea

193. Regurgitation

194. Stomachache

195. Vomiting

196. Weight gain - unexplained

197. Weight loss - unexplained

UROGENITAL

198. Decreased libido (sex drive)

199. Endometriosis

200. Frequent urination

201. Impotence

202. Menstrual problems

203. Painful urination or bladder pain - "Interstitial Cystitis"

204. Pelvic pain

205. Prostate pain

206. Worsening of (or severe) premenstrual syndrome (PMS or PMDD)

SENSITIVITIES

207. Alcohol intolerance

208. Allodynia (hypersensitive to touch)

209. Alteration of taste, smell, and/or hearing

210. Sensitivity to chemicals in cleaning products, perfumes, etc.

211. Sensitivities to foods

212. Sensitivity to light

213. Sensitivity to mold

214. Sensitivity to noise

215. Sensitivity to odors

216. Sensitivity to yeast (getting yeast infections frequently on skin, etc.)

217. Sensory overload

218. Sensitivity to pressure & humidity changes

219. Sensitivity to extreme temperature changes

220. Vulvodynia

SKIN

221. Able to “write” on skin with finger

222. Bruising easily

223. Bumps and lumps

224. Eczema or psoriasis

225. Hot/dry skin

226. Ingrown hairs

227. Itchy/Irritable skin

228. Mottled skin

229. Rashes or sores

230. Scarring easily

231. Sensitivity to the sun

232. Skin suddenly turns bright red

CARDIOVASCULAR (Heart)

233. “Click-murmur” sounds through stethoscope

234. Fluttery heartbeat

235. Heart palpitations

236. Irregular heartbeat

237. Loud pulse in ear

238. Pain that mimics heart attack - "Costochondritis"

239. Rapid heartbeat

HAIR/NAILS

240. Dull, listless hair

241. Heavy and splitting cuticles

242. Irritated nail beds

243. Nails that curve under

244. Pronounced nail ridges

245. Temporary hair loss

OTHER

246. Canker sores

247. Dental problems

248. Disk Degeneration

​249. Hemorrhoids

250. Nose bleeds

251. Periodontal (gum) disease

252. Need for early hysterectomy

[wheelingwithgrace]

Realizing how insanely flawed and horrible the American healthcare system is.

I am STILL advocating for myself.

What’s incredibly disheartening is how quick doctor’s are too slap a label on you instead of simply saying “I don’t know” and continuing to help you.

I am still fighting to be taken seriously by doctor’s when I go to the ER because of having tainted medical records due to previous incompetence.

I recently found out and now have to fix a current issue:

I had a video EEG with a clear tonic clonic seizure (as written in the results) - it was unreadable due to movement artifacts therefore results were inconclusive. Doctor’s took to this as “pnes” because they weren’t able to get a clear answer from it.

Later on, diagnosed me with Epilepsy.

Since I have the previous PNES label, I am accused of “faking” my seizures.

This doesn’t even begin to top the fact that a lot of physicians don’t even know what seizures are beyond their textbook idea of a Tonic Clonic.

It’s saddening, Seizures/Epilepsy are a fairly common condition too and we can’t even get the proper treatment and help.

[loser-pet]

bro having AIWS is so weird, and I think being a system makes these episodes a lot more visceral

last night I was talking to The Voices™️ (aka my headmates) about what their favourite trinket was and how I should create my headspace, and as I would talk to each of them I felt my body shifting in size (when I talked to princess my body would feel like it’s shrinking, when I talked to ruby my body would grow) and it got so much worse when I talked to Something.

it legit felt like I was growing and shrinking and the body parts were growing and shrinking and extending and it was so weird—it was like someone was playing with the customization options of my body (like when you get to customize your character at the beginning of a video game and you can choose your size and how big you want certain body parts to be).

this continued for probably 20 minutes even after I stopped talking to Something (give or take, my time perception goes out of wack when I get these episodes), and it was honestly really weird. when I get these episodes it’s normally one body part or my whole body (usually it’s my hands that increase in size, or me feeling like I’m way taller/bulkier than I actually am), but this time nothing was safe from my hallucinations. I also heard random super quiet whispers, which was definitely unpleasant

also I don’t see nearly enough representation for people with AIWS… I wish I had more folks to connect to over this weird condition

ALSO ALSO! We’ve finally decided on our system name!! From now on, us as a collective will be know as The Trinket Collective! We’ll probably make a post talking more about it in the near future -📺📚

[crippledcryptidd]

I don’t see many post on inappropriate sinus tachycardia so i’m gonna make some starting with an explanation of it

inappropriate sinus tachycardia (IST) is a form of dysautonomia causing someone to experience sinus tachycardia, this makes the heart rate 100+ bpm at rest and and 90+ bpm over a 24 hour period without an identifiable cause. IST can be asymptomatic but many with it experience symptoms

Before i go on i will explain some of these terms

Dysautonomia is an umbrella term for conditions causing dysfunction of the autonomic nervous system, which is part of the nervous system that controls functions that we don’t think about or control. Things like heart rate, sweat production, pupil size, and much more

Sinus tachycardia is when the sinoartiral node of the heart send signals to make the heart beat fast. Causing tachycardia which is a faster than normal heart rate, normal heart rate is 60-100 bpm, 100+ bpm is tachycardia

IST is defined as a heart rate of 100+ bpm while at rest and a heart rate of 90+ bpm over a 24 hour period. There is no identifiable cause and IST is a diagnosis of exclusion and other things must be ruled out.

IST can be asymptomatic but many people with it experience distressing symptoms like (not a full list)

Palpitations (uncomfortable feelings in chest from fast heart rate)

Chest pain

Shortness of breath

Issues with exercise

Presyncope (feeling like you’re going to pass out

Syncope (passing out

Some with inappropriate sinus tachycardia will also have jumps in their heart rate from mild exertion

Treatment for IST may include certain medications such as beta blockers, calcium channel blockers

ivabradine is shown to be effective but is not yet approved for treatment of IST

People may also use other forms of treatment like exercise training and lifestyle changes

Sinus node ablation is a surgery some get for IST which is seen to be effective at first but a lot of people with it notice that it reoccurs in a few months

Lowering heart rate in those with IST may not always improve symptoms

Sources and more information

https://www.dysautonomiainternational.org/page.php?ID=228