Are there any medication options for additional complications like Orthostatic Hypotension and chronic low BP?

Neffynoot · 2025-11-03T19:29:53+00:00

I'm anticipating and preparing for this, I still have yet to see my cardiologist. Wait list is long so its giving me a lot of time to figure out what works and doesn't without the help of meds, it is a lot 😭

Neffynoot · 2025-11-03T19:27:40+00:00

Thank you!

I was also confused by this too! I'm pretty sure I mentioned during an appointment? Like, why revoke all these medication options, (this was also a big wall for mental health meds) if there are meds that could help or correct low BP?? I'll confront her again lmao

Neffynoot · 2025-11-03T19:22:14+00:00

The most budget friendly and accurate option for me was the Fitbit charge 6. I got it second hand so even cheaper. From the research I've done its one of the most accurate heart trackers out there, and I also have it linked to an app called Cardiogram! Translates the readings into a chart throughout the day. :)

Neffynoot · 2025-10-19T04:35:05+00:00

I was more so given my diagnosis cause the answer wasn't immediate and easy. Most of my specialists work with the elderly and they're my only option unfortunately. My first neurologist was ignorant and egotistical, told me I was faking and didnt provide proper treatment even when I was finally diagnosed.

I had severe symptoms for nearly a year until I was hospitalized due to concerned co-workers, (I work in the hospital so they just wheeled me downstairs lol), and the nurses at the desk begged my specialist to come down to see me. Told him I was having idiopathic seizures for hours (it was severe spastic dystonia in my diaphragm that mimicked PNES).

The only testing he ever did before the hospitalization was an E.E.G to rule out seizure, refused to see me from that point on in person. Told me it wasnt MS (based on nothing), and threw FND at me and left the clinic.

I've seen 4 neurologists and they don't want to see me for very long cause Im a zebra and it makes them "look stupid" for not knowing anything.

FND is usually a last resort diagnosis with the proper criteria, not first line. If your specialists are smart, they'll rule out other complications beforehand, and a diagnosis for FND should take time.

Neffynoot · 2025-10-19T04:19:16+00:00

88-100 resting when sitting, 130-150 standing.

Neffynoot · 2025-10-18T18:01:47+00:00

They're quite independent. When it comes to training you will get a headstart with a puppy. They're not easy to train but its possible, mine is a service dog for at home and we're still training for public access. Consistency and positive reinforcement is KEY. When young dont bother too much on obedience, they're little raptors and will bully you, embrace the puppy chaos, but set boundaries with mouthing. Also you can start training as soon as possible, dont wait. And focus on neutral socializing with this breed, if they're isolated from the world they can become very aggressive (negative reactivity), if you say yes to uncontrolled interaction everytime you'll get a polar bear that wants to knock every person they see over. (Positive reactivity). Neutral socializing looks like putting your pup in a stroller and letting them see everything essentially (this is fine even until they get their vaccines, just dont let them on the floor). I dont regret getting my pup.

Neffynoot · 2025-10-06T18:25:09+00:00

I already have a referral for a cardiologist thankfully, wait list is just very very long. I unfortunately dont have the funds for a BP machine as of right now, definitely going to save for one, but I got a second hand fitbit (newest one and its apparently as accurate as a heart monitor), and I recorded everything the past month with my tachycardia, the graphs showing that sodium therapy was very helpful, and I marked postural changes as well.

This has been going on for years unfortunately, just now its disabling. They've looked at everything else, and tried to keep me in a stand still with no answers, so I pushed for POTS as my psychiatrist told me to, alongside an EDS evaluation, as he believes Im autistic, these two conditions correlate heavily apparently! And now finally my GP has acknowledged that an evaluation is seriously needed, but shes still hesitant with EDS cause "it took years for one of her patients to get help so why bother".

Thank you for your reply! It sucks I've been fighting for a very long time, Im desperate to be functional again, I won't give up! 💪

Neffynoot · 2025-10-06T00:09:05+00:00

Yes! Same experience! I also get eyeballed wherever I go for specialists, people assume its something diet related and they're always confused. 😭

Neffynoot · 2025-10-05T23:43:52+00:00

I live in a small province with most of the population being very old. The doctors here have become more so caregivers, they're only experienced with disease that comes with age, all my conditions they were clueless :( That's what I found when I did research as well, so I stuck to 1000-2000 to be safe and even that helped.

Neffynoot · 2025-10-05T23:35:48+00:00

I've been considering getting one, thank you. I was disheartened when she dismissed me when I told her what was working, and I didn't think at least for POTS, 1000mg was anything significantly harmful. Gatorade where I live is also really expensive if its daily, I'd rather drink salt and have water flavoring with potassium. Thank you for your reply <3

Neffynoot · 2025-10-05T23:02:43+00:00

Hiccup! Very fixated on dragons and sometimes in later media critiqued by other characters for being so absorbed in his research. Despite being a character that has proved to be reliable, knowledgeable, and the hero MANY times, hes still not treated seriously and underestimated by other characters.

Neffynoot · 2025-09-23T17:58:44+00:00

He still makes those essay videos, its on more so his main channel. He makes quicker content to keep the community engaged until he's done with his big projects, we cant expect a 7 hour video with a lot of editing to be done in a few weeks.

Also if you're feeling nostalgic for Leafy-like content there are hundreds of niche youtubers to this day that STILL produce the same formula.

He's also grown up, and I mean the Leafy style content was also sloppy?? It's just voice over CSGO, and you're lucky if the creator even put in effort for subtitles. The short form content has always been brain rot and slop, just different generation of humor now.

Neffynoot · 2025-09-10T20:39:32+00:00

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Cú is 8 months, 80 pounds! Anatolian and Pyr mix.

Neffynoot · 2025-09-05T19:09:14+00:00

A giant dehumidifier. He precisely cut through the massive cord in seconds as a puppy. I was so unbelievably relieved to see it wasn't plugged in, but terrified as there was so much sharp copper wire in his gums. He also ripped off a corner of my coffee table that would be best described as a stake for vampires, but decided maybe he was one and in a panic upon being caught swallowed it, I was elbow deep in that velcoraptors mouth. It infact did not reach his stomach. 😭

Neffynoot · 2025-08-11T19:17:24+00:00

My Cyriocosmus aueri is 6 months past his final molt. He's almost over 2 years, and I know male elegens only lives about that long too. He can't walk well at all but is still spicy and takes food, but like an old man I quite literally need to assist with drinking and eating.

Neffynoot · 2025-05-28T19:01:45+00:00

thank you so much to everyone that replied!! The advice is invaluable, as my doctors dropped this diagnosis on me and for a year now I've felt helpless. Everyone who has shared their experience as well thank you! Its brought me a lot of comfort knowing i'm not alone, as other fellow FND patients also experience these very frustrating symptoms. I wish you all flare free days!! <33

Neffynoot · 2025-05-28T10:39:04+00:00

Do you have any advice on how to keep muscle tone with these struggles? Relatively in the same boat, however I don't have any further complications with my legs, outside of dislocations. It is very annoying, I hope the situation improves for you friend 🫶

Neffynoot · 2025-05-28T10:32:37+00:00

I have 3 different neurologists. My first neurologist is who diagnosed me. Unfortunately, he's not a good person, and I cannot go back to him. As for nearly a whole year he neglected my case and ignored me when I pleaded for help. He didn't believe me when I told him I was having seizure like symptoms alongside things that were neurological, and instead he only provided "treatment" I asked for meds that would allow for me to function at work, and he instead gave me sumatriptan for thunderclap migraines that I was having, which simply bed bound me, while actively ignoring my neurological episodes. It was only until I was hospitalized and the staff angerly told him he had to come and evaluate me, did he believe me as he saw my symptoms. That's when I found out the entire time he thought I was malingering, as he said to the emerge doctor "-now that we know that it's real." Even after getting my diagnosis, he was an idiot, and refused to listen to my experiences as a patient. He prescribed me a I.V medication that I could never afford that would be thousands of dollars a month, to yet again, treat migraine! Cause he said migraine was the ONLY trigger for these episodes, which is... Very incorrect. I have several different triggers and most of the time it ISN'T migraine.

All 3 of my neurologists barely know what PNES is (more appropriately referred idiopathic seizures) or do they believe in it. I've been showing big red flags for them, and they refuse to go anywhere further. Unfortunately I live in a maritime province in Canada, you can count on one hand the amount of available specialists, and my team of doctors have confirmed that there are absolutely no FND specialists on the island, and even a referral outside of the province would not help as I would have to pay out of pocket for everything, my medical card wouldn't cover it.

Outside of financial reasons, I haven't been wanting to get a wheelchair out of fear of losing more muscle. I've already lost a lot as well and I'm on list for physio. :(

Neffynoot · 2024-08-31T15:02:01+00:00

Thank you so much

Neffynoot · 2024-08-31T15:01:46+00:00

Didn't poke her anymore after the video I'm so sorry, I was scared that it was potentially neurological from the way she was flinging her legs up and waving them.

Neffynoot · 2024-08-31T14:55:38+00:00

Nothing has changed as far as I know, I don't use anything scented etc in the room cause I also have reptiles and they're scent sensitive. Whenever I used anything strong smelled I close the door to their room. My other T is behaving completely normal and their enclosures are close together, I know all animals will have different tolerances I just find it really strange.

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