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#FaintingSpells #MS

Good evening, I’m curious to know if anyone on this site suffers from chronic autoimmune disease of multiple sclerosis if so has anyone ever experienced prolonged fainting spells they come on as clustered episodes and last for anywhere from a couple days to a week or longer sometimes and they have become longer and duration of time…

Looking for answers
🙏 prayers hope and new friends

Thank you all
Jessica ❤️

The DR’s ,
Neurologists, cardiologist,

We are all so confused

2 reactions 1 comment

Nightmare Shower Update

The past few showers have all been the same irritating experience;

• Nausea
• Dizziness
• Faintness
• Shaking
• Tremors
• Difficulty breathing / Winded
• Fast heartbeat rate
• Exhaustion

I have to sit down so much, which I hate because not only do I not want to have to sit down every minute, I have to sit on the shower floor as there is nowhere to sit which makes me feel uncomfortable.

After a shower I desperately need to rest as I can’t stand for even for a minute when I finish, it’s like a workout for my chronically ill body.

I can’t really stand for long in general and the shower makes it so much worse.

I did try to change the temperature of the water to something cooler but it didn’t change much.

For all of you that suggested a shower stool, I am looking into it now and I can see why it would help me significantly as I wouldn’t dread showering as much.

I know some people were mentioning PoTS, I have been looking into that as well, I’m not diagnosed though I do have all the symptoms except for fainting. But I do get really close to fainting.

I did finally talk to a doctor about it, I didn’t mention PoTS as a possibility because I’m just too shy to be that direct.

But I will see a doctor soon.🦋

#ChronicIllness #Undiagnosed

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Post Shower Nightmare

Firstly I’m very thankful for all the comments and suggestions and want to reply to them but I just don’t have any energy at the moment which I apologize for.

But I need some advice.

I took a shower and everything fell apart;

I got so lightheaded and dizzy I almost passed out as I felt so winded I was breathing heavily, shakily, and quickly because I felt like I couldn’t get any air.

I had to sit down in the shower to avoid fainting.

My heartbeat was likely high as it felt so while in the shower, when I got to my room it was over 113bpm.

I was shaking so much and still am as my hands are trembling a lot.

I was so nauseous I felt like throwing up and am still nauseous and experiencing the same thing.

I’m also exhausted feeling weak as I had to get right back on my bed,

I admit that I do feel like crying at the moment from how miserable I feel and how I’m going to keep experiencing this after I shower.

I don’t know how to tell people about this, I’m afraid of being seen as dramatic or not being believed.

My hands are still shaking like a leaf.

Any advice is much appreciated.

#CrohnsDisease #InflammatoryBowelDiseaseIBD #ChronicIllness #ChronicPain #MentalHealth #MajorDepressiveDisorder #GeneralizedAnxietyDisorder

34 reactions 13 comments

My PTSD story.

The symptoms I experienced along my 50 year PTSD journey (so far):

- Childhood bed wetting

- Heart palpitations and arrhythmia

- Constant anxiety and fear

- Inability to connect

- Visual flashbacks (3 distinct images)

- Panic attacks

- Dizzyness and fainting spells

- Vision migraines

- Light sensitivity

- Sound sensitivity

- Emotional dis-regulation

- Dissociation

- Sleep paralysis

- Sleep walking

- Nightmares and violent dreams

- Night terrors and animated sleep

- Obstructive sleep apnea (10 years)

- Vagal freezes/shutdowns while driving

- Nighttime body spasms

- 10 to 30 daily neurogenic tremors - Been shaking for 18 months now...

- Leg Length Discrepancy and right hip pain caused by Psoas constriction

- Chronic upper back and neck pain due to Leg Length Discrepancy

- Temporary loss of function in right arm

- Every IBS symptom in the book

- A sudden loss of 25KG (55lb) over 3 months

- Sudden hair loss

- A loss of confidence in my ability to perform simple tasks

When you write it all down it looks pretty obvious right?

But when it's all you have ever known then you adapt and get on with life... Until your body decides it has had enough of compensating.

Just posting this in the hope it helps someone else identify this insidious condition.#PTSD

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I haven’t posted here before. I have an autoimmune condition that causes my cerebral arteries to constrict abnormally, causing low blood flow to the brain, cognitive problems, and orthostatic intolerance. It was described in 2016 independently by two research groups, one in the US and one in South Kores. The details of the antibodies are unknown, and I doubt they’ll be discoveed in my lifetime unless antibody testing suddenly becomes much cheaper and better.

I am still awaiting testing (Doppler ultrasound), but patients with this condition have a 20% average reduction in blood flow. You faint at a 40% reduction, so you could say I’ve been “half way to fainting” every day for the last 20 years.

It’s called orthostatic cerebral hypoperfusion syndrome (OCHOS).

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A Journey Round my Skull by Frigyes Karinthy, a review

This is like a detective story, where the author follows the bread crumbs, leading up to the ultimate discovery of a brain tumour. I too follow such clues in my own life as I try to make sense of myself and the sometimes puzzling world around me.

The symptoms included a rumbling sound in his ears, which anger or irritability seemed to trigger and he interpreted as being a train in the local vicinity; more likely though it seems it could be caused by blood pressure, which I sometimes get, with ear canals blocked with wax. In other words this is not so much an hallucination as he believes but internal, bodily phenomena. The problem is interpretation over identification (what something reminds you of as opposed to discovering what it actually is - memory and imagination as opposed to present perception).

One of the interesting things this book discloses is the apparent distance and direction a sound is coming from. What we may mistake as being loud and far away, could in fact be much closer than we imagine, internal even. The book is therefore asking, can we mistake inside sensations on all sensory levels, for external ones and if so, what are these clues trying to tell me?

Other symptoms included giddiness, connected to fainting fits, nausea followed by vomiting, leaning to one side and as the illness progressed, eyesight and handwriting deterioration. He also suffered from headaches, which eventually became focused on the back of his head. One subtle symptom that seemed to creep up on him was a gradual loss of taste, like Covid patients nowadays but with no loss of smell. After the operation, he regained this lost sensation.

Apart from all this, he starts getting unconscious clues to the fact that something serious is going on in his life, through dream symbolism or even external events drawing his attention to the same thing (films on the subject, a dying patient in a mental ward etc). By monitoring his life, he starts to build up a picture of what is really going on, with his illness and that it is indeed an illness. Something out of the ordinary was happening internally, just as it could in the outside world, disturbing the peaceful routine of existence but the question was, what? Like paranoia from chronic insomnia, you know something is killing you but you don't realise what it is.

I for instance have two common dream themes, one which is needing a toilet but not being able to find one, which wakes me up as a symbolic prompt, to get out of bed and urinate (being a seventy year old male, this is par for the course). The other repeat pattern is finding myself at university or on the outskirts of one, which is because I am continually seeking knowledge and insight to the human condition or indeed anything. Like Einstein I have no special talents, I am just passionately curious. I did in fact live in Cambridge but never studied there or indeed at any university.

Another thing this book discloses is how previous knowledge is built upon and refined through experience, so that over time human awareness, human science progresses as more details about reality are discovered. In this way, the darkness of ignorance is pushed further away by the light of truth, highlighting the previous errors of thought, buried in history. He also mentions the tempo of impressions we all have for measuring time, citing HG Wells Time Machine: we live in the present but measure time as change, which Walter Pittman of Gettysburg College also points out 'What if all truth is just an experience of consciousness?'

In chapter thirteen, we hear how a young, enthusiastic surgeon wanted to ride to his rescue, trampling over him in his certainty. Instead through his own knowledge of surgical procedures and their outcomes, he was able to save himself from this well meaning interference. This lack of knowledge by the young man then could have killed him (see Dunning - Kruger effect and overconfidence): apparently the body collects poisons in cysts and by cutting into them, you release them back into the patient, killing them.

When the author is in a clownish, entertainer mode (dispersed mental state), he allows his terse observations to be dismissed by the opinions of others - in other words social popularity overrides personal awareness (experience) of the truth.

This is Eastern Europe, sounding like the eighteen seventies, not the nineteen thirties. The narrative is in some ways like the ramblings of a senile old man until you realise that this is the crumbling remains of the Austro-Hungarian empire, pre-world war two. It may remind you of a Pirandello play or Alice down the rabbit hole, in its confused interplay of ideas or the insane babblings of the Mad Hatter's tea party. More probably though the slightly sinister feel to the story, may remind you of some Kafkaesque nightmare as in The Trial, through its subtle paranoia sitting in the background but maybe that's the disease at work and not the society of the time.

6 reactions 2 comments


Hi, I'm elana but people call me End. I was recently diagnosed with a fainting disorder and I've been losing people nonstop since my first episode. I'm a junior in college, and my support system is pretty much non existent, which is why i got on this app. I'd like to share about my issues and find a since of community as people here seem to understand what im going through. Its nice

29 reactions 9 comments

Losing friends due to illness

I am a junior in college, and was just diagnosed with a fainting disorder a little while back ago. Prior to diagnosis I was basically bullied out of greek life because of a rumor someone started saying i was "faking being sick to get out of things". After receiving my diagnosis its only gone down hill. I am losing the small support system that I had on campus, and am either just my illness or am a horrid person for lying about having one because apparently being diagnosed doesn't mean a thing..? I'm really struggling and could use some advice on how to deal with this.

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What a Drop Attack can feel like!

Functional Neurological Disorder (FND) is a difficult condition to try to explain and understand. This makes understanding the symptoms of FND even more difficult to explain. One such symptom, and one that I experience myself, is Drop Attacks.
A Drop Attack is basically what it sounds like – you drop to the floor without any warning or obvious reason! It’s not like fainting where you feel unwell then briefly lose consciousness & fall to the floor. In a Drop Attack you simply just drop to the floor for no obvious reason & while still completely conscious & awareness of what is happening. For me, it’s almost like a puppet on strings suddenly having all their supporting strings cut all at once & the puppet collapsing in a heap on the floor. As you can imagine, this is a terrifying symptom that can often cause some painful injuries to the person experiencing them. No matter how many times you experience a Drop Attack it’s not something that you ever get used to, if anything it makes you more concerned about the next one.
@fndhope @sassyfndlife #FunctionalNeurologicalDisorder #ChronicIllness #ChronicPain #dropattacks

17 reactions 10 comments

struggling with anxiety/anxiety induced fainting & seizures

i'm a 16 yo female and a sophmore in highschool. for awhile, since i can remember, i've been struggling with moderate to severe anxiety. my mother and father both have it so i was (ofc) bound to have it. some days i cannot even leave my room because i am crippled in fear and going to school makes it worse. i feel crowded, almost claustrophobic and so much at times that i pass out. i have also never had a history of seizures until this year, having already had 2 and they make my anxiety so much worse. as of writing this, i had another seizure today in school and my anxiety has hardly dropped since. since i was already stressed out, waking up from my seizure and seeing everybody staring at me as i woke up, i wanted to cry. as i went home, i felt extremely guilty and my mind was racing with everything that happened. what people were thinking when it happened, if i was being judged, and more than anything i felt very belittled. lying on the floor while being stared down on like an ant on the ground. im still trying to figure out if seizures are something that can randomly pop up in your life after never having them. having that thought that i might just drop to the floor in any public setting really nerves me too and im always anxious about that, on top of everything else this is horrible to add into the mix.

as of right now, im still recovering, trying to calm down and trying to find a reason for this. if anybody has any insight or is more knowledgeable than me, i would appreciate it. <3

14 reactions 6 comments