Fainting

Ok, so this will be a bit long, but if you have a "button" feeding tube please read and chime in, I really need the advice.

So I just got a PEG tube installed back in the spring of this year (2024). I was sadly not given any information prior to my procedure, and very little after, about anything that was going to happen to me. I was certainly not told that there were different types of feeding tubes or given a choice between them. I knew I needed a feeding tube (I was desperate I had been suffering for so long), I knew I was going to have something placed in my body and that it would be hanging out of my body.
I only found out exactly what it would be like, AFTER it had happened. My doctor left over a foot of tubing hanging out of me and very little instructions on how to care for it. The mental toll it took on me was terrible. I had mental breakdowns nearly every night for a week straight, they were so bad I could feel my sanity threatening to break. At a point I figured out that if the tube were shorter it could help some with the mental and physical problems. As I have a fainting disorder and sometimes have to be carried (while completely limp), and the danger of me pulling on the cord was great, and can't tape the tube to myself because I'm allergic to adhesives. (I tried a "belt" but it caused massive discomfort)
Through my own research I found out about a "button". I made a list of all the reasons why getting that instead of the massive tube would help me, not least of all being my sanity.
However, when I asked my doctor he gave me three reasons why he didn't want to do it.
1: they're expensive
2: they're hard to get a hold of
3: because of my size (110lbs) he claimed that even a pound change in my weight would cause the button to be too loose and fall out or too tight.
So I caved to what he said and settled for getting the tube shortened significantly. But there is still a good 6" of tube hanging out of my body.
Months after, I'm still seeing the problems with the tube. It's more to clean and maintain. The threat of tugging on it is still present, though reduced, due to handling small children daily and again my fainting disorder, and just plain sleeping. And it significantly impacts my self confidence. Though most people don't notice, I still have to see it everyday, I still have to adjust it everytime I get changed or use the restroom and do my best to tuck it away in my pants. I'm doing much better mentally than I was but I got a temporary heart monitor for a few days and all the panic and problems from before immediately flooded back, I felt more machine than woman.

All of this to ask, is the "button" worth it? I understand that everything will have it's pros and cons, but are the "buttons" more trouble than they're worth? Or do the benefits outweighs the problems? Given my situation, does it sound like it would be better? I really hope I can get it, mainly for my self confidence, but I want to do my research before demanding it of my doctor or finding another doctor that will do it. Thank you so much for your help!

I don’t know what you are going through but I truly do wish you all a life full of joy, peace, and happiness at all times. May life get better and better for you each day in every way! I hope and pray only positivity comes your way, nothing negative that you don’t want. You deserve to be happy! May you all be well.

#CheckInWithMe #MentalHealth #Disability #Anxiety #ChronicIllness #BPD #BorderlinePersonalityDisorder #Bipolar1 #Bipolar2 #AnorexiaNervosa #Trauma #PTSD #Selfharm #SuicidalThoughts #BipolarDisorder #CheerMeOn #MajorDepressiveDisorder #MightyTogether #SchizoaffectiveDisorder #Schizophrenia #GeneralizedAnxietyDisorder #ADHD #Addiction #SocialAnxiety #Stroke #Autism #AutismSpectrumDisorder #Cancer #SeizureDisorder #Scoliosis #SensoryProcessingDisorder #ComplexPosttraumaticStressDisorder #ThyroidCancer #SocialAnxietyDisorder #SleepApnea #Epilepsy #EatingDisorders #EatingDisorder #SeparationAnxiety #ChronicFatigueSyndrome #ChronicFatigue #Fainting #PanicDisorder #PanicAttack #PanicAttacks #ParkinsonsDisease #ChildLoss #ChronicDailyHeadache #Fibromyalgia #FoodAllergies #FunctionalNeurologicalDisorder #CysticFibrosis #Migraine #MightyPoets #MedicationInducedMovementDisorders #MaleReproductiveCancers #MyCondition #MoreDiseases #MoodDisorders #Misophonia #Mania #MyCondition

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,
Ect..

We are all so confused
#MultipleSclerosis

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

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

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

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).

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

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.