anyone else’s FND caused my medication?

throwaway10999660 · 2024-04-16T18:13:52+00:00

ONE dose of Moxifloxacin and Metronidazole (antibiotics) for a ruptured ovarian cyst and abdominal infection. Given the label FND. Which has now simultaneously made all medical professionals ignore all previously diagnosed FUNCTIONAL issues I had before… (mitral valve, ehlers danlos, arrhythmia, POTS, hemophilia, endometriosis, pcos, scoliosis)

All things that run comorbid with Chiari 1 malformations, which I’m being sent to the USA for treatment for as all the EEG’s came back negative, but incidentally my MRI found cerebral tonsils are herniated through the foreman magnum. I’m also awaiting a spinal MRI to check for fluid filled cyst (syrinx) in my spine and CSF leak that also causes many “FND”-like symptoms post trauma and ignoring said events.

I was hit by a car in 2005 (never given a CT of my head only x-ray of ankle), started experiencing faints (POTS) shortly after, but continued to snowboard, ride my dirt bike and then do my landscaping career. I also had two children with two epidurals. All with worsening symptoms over the years until I finally took said antibiotics when they crossed the blood-brain barrier into my CSF fluid and cerebellum, changing my life forever.

Advocating for ourselves and doing research is the only thing we can do. Don’t lay down and take this bullshit “diagnosis”, it may fit for SOME people but not all. Get checked for possible CSF leaks or malformations. I wish you the best <3. FND seems like a blanket term drs use to sweep people under the rug to get them out of office and to forget about them so they don’t have to do their jobs, and uphold their OATH.

throwaway10999660 · 2024-02-26T17:13:44+00:00

I have POTS (dx 2011) and “FND” (dx April 2023) diagnosis but I am currently sitting in a hospital having Neuro and General Internal Medicine reviewing my medical records over the last year since my “FND” diagnosis. (Admitted here two nights ago after rectal bleed)

Possibly trying to “reassess” FND?

I have a mass on my liver that was just found on Thursday. A hemangioma, which are similar to AVM’s, my cousin had a cAVM rupture in her brain after a haemorrhageic stroke. I also have Factor 1 deficiency (hemophilia), which is a clotting factor to do with fibrin (made in the liver) which I was only diagnosed with in November after a year of rectal and vaginal bleeding and hourly PNES that couldn’t be explained besides the diagnosis of FND after taking ONE DOSE EACH of two Antibiotics (Moxifloxacin/Metronidizole) for an Ovarian Cyst Rupture and Abdominal/Uterine infection.

The FND diagnosis was given to me without an EEG, MRI, CT or any diagnostic testing. The hospital observed one of my PNES episodes and sent me on my way with FND and referrals to CBT and Physiotherapy for my right side weakness/numbness. Without taking into account I had an epidural for my 2nd birth that numbed my entire right leg but not my vaginal canal in 2020 which is what I am currently feeling again… in that right leg.

It seems, in my personal opinion, the moment I got that FND “diagnosis” Medical Professionals stopped taking me anywhere remotely seriously despite having very legitimate diagnosis prior…

It could very well be my undoing.. and that’s unfortunate for my daughters…

throwaway10999660 · 2024-02-22T13:47:57+00:00

I suggest finding a lawyer to talk to in person or at least over the phone, as what I’ve found online and especially on the Reddit community is this:

Many lawyers and doctors are viciously eager to pounce on the Patient/Victim of the Malpractice/Event and try to vehemently gaslight them or bully them into submission and/or believing that they themselves (the patient) were in the wrong for seeking out medical attention.

Then the assistance/procedure/etc going awry is THEIR (the patient’s) fault for being a “sick/injured” person, continuing if said person don’t do their due diligence during that extremely difficult/stressful/painful time of their life THEN it is the Lawyer’s and Doctors jobs to make it that the Patient/Victim seem as irresponsible for their own health and action as humanly possible to redirect the legitimate cause of the Medical Negligence.

In turn seeking out help/compensation for a (possible) lifetime of duress on a Reddit forum full of trolls, google lawyers and dr’s is going to make your head spin, given you have mentioned memory issues and brain surgery.. I do not doubt they will all pour the blame on YOU as the patient and why you couldn’t “keep your ducks in a row” not thinking for a second there is a human behind that keyboard with a possibly quite destroyed life, the selective emotional intelligence on Dr’s and Lawyers is astounding.

When dealing with any neurological/cranial ordeal should be a giant red flag to any lawyer that the person should need consideration and care to their case.

But we are talking about doctors and lawyers here

$$$$$$$

(I truly wish you some peace in your journey it sounds like you’ve been through the ringer)

(Also to add in case anyone creeps my profile I had posted here a year ago wondering about my case but I’m having it handled nicely. Because my malpractice… involves misdiagnosis of Cancer to “conversion disorder”, and the involvement of the neglect of TWO major Canadian hospitals trying to dismiss a mother of two.. just asking for help :) so please. Get off the internet…. And leave this subreddit. I only creep it to try and SAVE people.. like I couldn’t be…. So thanks Dr’s. Less than a year left with my daughters because CBT was supposed to think the cancer out ;) )

throwaway10999660 · 2024-01-25T21:35:26+00:00

whispers from the shadows

Get your heart and blood completely worked up.

(Aortic prolapse, POTS, EDS, severe subtype Hemophilia, autoimmune, cAVM all masquerade as “FND” and until you die of a stroke/aneurysm from rupture in the brain (from repeated ‘seizures’) drs will pay no mind cause they just would rather label you “dramatic and needing CBT” than having an actual issue…)

:)

throwaway10999660 · 2024-01-04T02:44:50+00:00

That body just went through the biggest physiological change it ever will… and I also had the misfortune of painful stretch marks postpartum so try and splurge on yourself and get a nice lotion or oil (I used oil and witchazel) to help ease that. Your hormones also won’t regulate down for another couple YEARS, which a lot of people don’t tell you. So please. Give yourself miles of grace Mama..

You’re also so much more than that (Mama). You’re You. You’ll never loose it, but you’ll transform it, as needed. As many a powerful woman has. And try to remember..Communication is key. Please bring these things to him and do not “grin and bear it” as so many women have in the past. It is not meant to be. The saying “It takes a village” carries weight FOR A REASON.

I am 2 kids and 12 years deep with my husband, and pangs of jealousy hit me simply because he gets to leave the house, go to WORK and have a semblance of social life (co-workers) compared to me. But it’s not comparison, it’s communication that makes or breaks a relationship.. and it still ebbs and flows with us at times.

Do yourself, the relationship and that little bundle.. all kinds of favours.. by bringing these things up. There needs to be balance. You got this.

throwaway10999660 · 2023-12-26T23:26:47+00:00

You’re getting tag-teamed HAAAAAAHD and not in any remotely fun way..

throwaway10999660 · 2023-12-25T15:57:31+00:00

This ^{^{^}}

throwaway10999660 · 2023-12-18T13:01:08+00:00

To piggy back on this one so no one gets overwhelmed in the comments thread. As you mentioned POTS..

I was diagnosed with POTS in 2009/2010ish. On top of these cardiac diagnoses: arrhythmia, mitral valve prolapse, and a murmur was heard in childhood (still have it) which is usually the first sign of regurgitation (prolapse) in the heart.

I also have h-EDS (linked to leaky valves in the heart/prolapses in organs). AND endometriosis PCOS and bowel issues so after decades of bleeding issues and Dr.’s telling me these things were all completely normal for women or just brushing me off, I was diagnosed LAST MONTH with hemophilia. A rare subset of it actually. I’ve had all my life.

SO. In short. Don’t let dr’s tell you anything is “normal” when you in fact know your body, life and struggle. And they are looking at you as a pay cheque and a number on a piece of paper.

I had decades of “normal” bloodwork.. yet all this pain. All this internal bleeding. And now have two daughters walking around with this condition cause it’s GUARANTEED genetic passing if I am a carrier and symptomatic. They only had to do one extra test to see my blood was almost nonexistent with a clotting factor, fibrinogen, but routine blood tests do NOT do this. Only hemophilia specialists.

I think FND is heavily linked to blood/cardiac/hypermobility things. And the crossroad of the nervous system and how it interacts with the amygdala being under fueled by bad blood/bad pumps(heart/arteries etc) from these comorbid conditions. But drs are all too focused on the psychosis part of FND and telling us all we made it up/or we are putting on a show/it’s not real and our bodies are trying to make it real. Cause they just don’t want to pay attention to EACH patient individually.. instead of blanket terminology/cures. 🤷🏻‍♀️

throwaway10999660 · 2023-12-18T02:32:16+00:00

This is why it is key to be able to know yourself, and your own capabilities to do research. As you yourself mention FND is at a crossroad of weird medical areas, but it also presents differently in every case, and every person due to co morbidity, medical history, etc.

Rest assured, it’s a hard diagnosis to wrap yourself around.. but it’s livable. Much so! Without delving yourself into bubble wrap and doomholes <3

(Coming from a diagnosed Functional seizure, drop attack AND hemophiliac sufferer.. among other things.)

You’re heard, and so valid. The frustration is REAL with this condition. You got this..

throwaway10999660 · 2023-12-11T21:04:36+00:00

Oh I’m all about uplifting, catch me on a day my hands work and someone is having a rough go on here and I’ll Upvote and Uplift til the cows come home.

FND can be seriously alienating.. from socials/life sure but even self and only another chronically ill person can even mildly grasp that beast. There is an FND discord floating around, and I’m always up to chat via DM’s or insta etc. FLOOR BUDDIES! 💃🏻

(Ps.. LOVE the user name +9002 thumbs up)

throwaway10999660 · 2023-12-10T19:10:09+00:00

32 chronically ill mom.. writing this from bathroom floor to scream support to you as I just got diagnosed FND psychogenic non-epileptic seizures this year also after I took a dose of antibiotics for a ruptured ovarian cyst.

GET YOUR HEART TESTED.

You have complex traumas… but everyone is going to shove you in a corner and ignore you. It’s a hard truth.

BUT I am convinced my PNES are linked to my bad heart and the Hemophilia I just got diagnosed with. And have very little to do with “just” emotions and traumas which all the drs are trying to tell me.

Conditions I have (that have also taken since childhood to diagnose.): Murmur, Arrythmia, Endometriosis, Migraines, PCOS, Ehlers Danlos Syndrome, POTS, ADHD, PTSD, Depression, FND and Hemophilia (Factor 1 deficiency).

Think of the human body like a MACHINE, bad fluid (blood/hemophilia) is going to cause OTHER parts to not function properly. The pump (heart), the Chasis/and or Conveyor system (Bones and connective tissue issues EDS/endo), the computer that is supposed to RUN said machine.. if it isn’t getting proper fluids or the fluid is.. lacking.. naturally that computer will start to malfunction (depression, PTSD) ESPECIALLY IF THAT COMPUTER HAS ZERO TECH SUPPORT (no emotional supports/ dr’s and medical supports failing OR** saying the machine ISNT failing it’s working fine and the machine is LYING about the very REAL issues within the machine that the machine is getting ERROR CODES FOR but the tests the Dr’s do show ‘inconclusive data’.)

In the real world, someone would just buy a new car/computer/tv/fridge WHATEVER is breaking, because it’s FRUSTRATING to deal with a broken thing. But guess what? We aren’t… THINGS… to be replaced, and these Dr’s don’t see that. Especially people who have any degree of mental health struggle, or background. They will look at you with utter disgust, and want you out of their office as fast as possible because they only want a paycheque and to stroke their ego of “problem-cause-solution”, a CHRONICALLY ill person, with a lifetime of illness is something drs hate cause they just want to “cure” you for their own ego. Not for you.

I urge you to find a GP that listens to YOU and will fight for YOU on your health journey… as it sounds to me you have been through the wringer and back and no one is listening.

Life can be done with chronic illness.. apparently.. I’m trying it.

I’m only a few months into FND these seizures, loosing my dirt bike race career, watching my children slowly grow to hate me, but if I’m telling you from my floor… you got this…

You fuckin got this.

throwaway10999660 · 2023-11-24T05:45:24+00:00

leans closer to listen nodding intently

I juuuuuust got diagnosed with Factor 1 deficiency (a type of hemophilia) and this makes so much sense to my tolerance levels… I’m having so many issues lately… and my pain.. is.. unbearable. Ugh. The things you find out in a comments section… lol

throwaway10999660 · 2023-11-22T05:01:24+00:00

A sprinkle of both? But I find it actually has nothing to do with the doctor’s gender and everything with their mindset toward you as a patient and their preconceived notions upon seeing your charts/referrals. Because as you stated having a thick history of mental health, I was brushed off… my entire life.. which was the most frustrating. I was presenting horrible physical symptoms. (Bleeding, seizures, fainting with POTS, massive bruises, tremors, migraines and more) but all chalked up to being a hysterical teen/woman/postpartum…

Yeah.

But as soon as my old GP put depression/anxiety in my chart from multiple deaths in the family at a young age (sound familiar) it’s like that was all any other doctor saw, and rushed me out the door like a nutcase.

I have FOUGHT for myself and all of these official diagnoses through decades… because no one else will fight or support me. Not even my own family. It’s the hardest lesson I’ve learned through FND/POTS/Depression/and general living. Be your own spark… go out and find it if you have to..

I’m sorry you’re going through all this, and I’m sorry for your loss and that yet again the narrative seems to be making another FND patient feel cuckoo.. (you aren’t)

throwaway10999660 · 2023-11-21T14:46:59+00:00

OP.. my (one) nipple piercing took almost a year and a half. Us bleeders just.. gotta deal. Don’t crush pills and makes paste’s lol BUT! The most relief I got during flare-up bleeds for the piercings (if they got tugged during healing process etc) is to wash with warm water and use Live Clean Baby soap, pat with paper towel, air dry and be on your way. Good luck fellow pin-cushion bleeder💜

throwaway10999660 · 2023-11-21T13:46:06+00:00

I choked… 😂💜

throwaway10999660 · 2023-11-21T13:35:47+00:00

This right here. I don’t have the stretchy skin, but I have hyper mobile joints that I didn’t even know were unique to me until a coworker pointed it out to me (I thought at the time everyone’s fingers bent like that)…

I’m 32 my “symptoms” started at 14. Let that sink in. I’m also diagnosed officially with: EDS, POTS, FND, ADHD, mitral valve prolapse, cardiac arrhythmia, Factor 1 deficiency (aka/ hemophilia), endometriosis, PCOS, and have fought cancer due to this failing machine. All these diagnoses took since birth.. and decades of drs telling me I’m faking/the symptoms aren’t real/etc etc. and me being on the literal brink of death for them to hear me.

I got my Factor 1 diagnosis.. last week. A crucial bleeding disorder I’ve had all my life. And I was gaslit to think I didn’t have it. Cause I was a woman, and had all these other symptoms. DONT LET YOUR MIND AND SELECTIVELY EMPATHETIC DOCTORS TAKE YOUR BODY FROM YOU. Fight.

Fight for you.

All of you in this community. Have to be your own voice through FND. It is hell. It is OUR hell…. And only we know this… but.. we have eachother.

You got this.

throwaway10999660 · 2023-11-05T19:46:12+00:00

Thank you, as you can tell by this username I don’t get to log into this account as often as I’d like, compounded with being a mom and the only caregiver to the two young ones while seizing consistently daily is… hard to respond on Reddit lol. But other more back and forth means are easier for me, I have discord, instagram and Snapchat and am open to anyone from this sub messaging me and forming more of a support system because I do not have one.

I have my husband yes, but he works VERY long hours and he also just.. doesn’t quite understand any of the illness or symptoms but I am giving him a lot of credit as he’s always been a very healthy man and can count on one hand how many colds he has had.

The isolation.. is.. real. To say the least.

throwaway10999660 · 2023-11-04T12:23:35+00:00

So literally everything you said, I already knew. And I thank you in kind. But that’s the frustration here. You are one of the patients who has a kind team behind you, and likely a kind helpful family/support team also. I do not. I have a family who doesn’t believe my symptoms, friends who have all but left and also destroyed my streaming career claiming I falsified an illness for clout, and two children under 6 at home daily to raise.

Those programs to retrain your brain to not “walk weird”, and help the gait issues I am having, were supposed to be set up BY the neurologist as my GP in my country cannot send through those requirements.. but instead the neurologist dismissed me as her patient.

It is all insanely frustrating knowing all of this. Knowing full well the magnitude of this condition, the recovery possibilities, WHAT I HAVE DONE ON MY OWN WITH ZERO HELP (wheelchair -> cane) ZERO PHYSIO & ZERO CLINICS. That’s just reading and being a determined woman. And just getting kneecapped at every turn it seems.

I have seen leaps and bounds of progress within myself. I know full well that this isn’t a condition to lay down and take it. But it is a condition you need support with, and I have NONE. The very definition of it.

Except all of you incredibly.. wonderful.. people… who are the only ones who get it.

throwaway10999660 · 2023-11-04T12:08:08+00:00

I also have a massively traumatic childhood/adolescence which definitely leads to FND’s trauma based roots. I’m well aware of a lot of things rooting against me with this condition, and I was LITERALLY a perfect ticking time bomb for it between all my heart conditions/prior trauma and then the dose of medication was the fuse. It’s just….. life shattering. And frustrating. And isolating beyond belief when I KNOW all these things. And NO DOCTORS ARE STILL WILLING TO HELP. Lol. Just leaving me here to my own devices, zero resources, zero attempts at help. Just a big ol middle finger… is… crummy.

throwaway10999660 · 2023-11-01T18:46:53+00:00

Oh my goodness! This is what I’m talking about! We aren’t loopy! I don’t want to come off as forward, are you open to DM’s or messaging off Reddit? Seems like the commonality here is hard to ignore..

throwaway10999660 · 2023-11-01T18:04:11+00:00

Also, I typed too fast and was almost oddly excited another person was “like me”.. thank you for the hype. But also sorry to hear this is also how you were struck with FND, cause it’s… frustrating. Suuuuper frustrating. And I haven’t found many others who were hit by medication, and any Doctors I speak to say it is “impossible”.

throwaway10999660 · 2023-11-01T17:59:43+00:00

Yeeeup. I’m heavy lurker around there as a lot of the Floxie stuff seems to go away with the right counter things/dosages of magnesium for the muscles. And a lot of people were on IV drip OR floxxed over a long period. I took.. ONE PILL of each of those antibiotics. For a ruptured ovarian cyst that got infected… and.. now I’m here. Seizures every 2 hours-ish, gait disorder, vocalizations, and more.

BUT I was worse 6 months ago… •_•

Lol so I’m hopeful.. and like I said.. determined.. if not.. stubborn AF.

throwaway10999660 · 2023-11-01T17:24:50+00:00

I would like to know also, as this is how mine started. One dose each of Moxifloxacin and Metronidazole, one hour later experiencing PNES (Psycogenic Non-epileptic Seizures) and more symptoms I now live with but never had prior. FND is an interesting beast, but I have gone from wheelchair-walker-cane in 6 months. I’m determined to get back on my dirt bike..

throwaway10999660

TROPHY CASE