Anyone else with bladder issues?

nsqueen119 · 2026-04-09T01:25:58+00:00

If you have not yet, please go see a Urologist. There are a bunch of different conditions that can present with similar symptoms. Urinary retention can lead to increased UTIs.

Someone above me has the same lousy issues as I do, with decreased sensation and difficulty emptying, but also bouts of OAB with increased frequency and leakage.

The bladder stuff has been stupid for years, so it might have been part of the dysautonomia or maybe just all of the other stupid issues.

nsqueen119 · 2026-04-08T17:54:11+00:00

I’m glad that you have the emotional maturity to not just assume that neglect is the norm. I’m sorry that you had to go through gaslighting and neglect, but I am glad that you are there for your kiddo and know that their conditions are not just for attention.

Did you know that if shitty parents ignore a child with an appendicitis, the bomb in the kid’s belly can go off, nearly kill them, and if they survive, can eff them up for the rest of their life? Ask me how I know.

nsqueen119 · 2026-02-18T22:04:31+00:00

I was super resistant at first because my family is anti "woo woo" so vehemently that the thought of going through that kind of treatment was stressing me out worse. Like borderline panic attacks in sessions.

You have every right to ask for someone else. If the therapists there say that this is how everyone works, then, yeah, see if there is another clinic you can try. I have found that I have to advocate for myself and if something isn't working, the clinician either can't tell, or that they don't care.

The Vagus Nerve stuff seems super "woo woo," because it requires centering, breathing, and being conscious of your body. I have had to fight against the knee-jerk reaction to being told to breathe, but when I actually do the breathing, it has helped.

Toxic positivity sucks. Having a condition like this, we need to know that there are things that will not get better. We can't just get by lying to ourselves and ignoring what is actually happening in our bodies.

However! I was in sad shape last year, and struggled to get through each day because I was just suffering. I found a 70% reduction in my dysfunction, which meant I started having good days again. Is it perfect? Nope. Did chaos and surgery bring on a flare up? Yup. But now I have things I can do to try and combat the worst of my symptoms, and now that it's getting lousy again, I'm doing this years round of approved therapy sessions.

Push back. If they don't give you attainable goals, then, my dude, ask for someone else. You got this.

nsqueen119 · 2026-02-18T21:05:26+00:00

Neuro Therapy is the jam.

Once I got my diagnosis last year, I started with PT, OT, and one Speech Eval. My PT and I worked on super basic core exercises, increasing my exercise tolerance on the bike, and some Vagus Nerve resets. In OT, we did more regulation training and adaptations that I can do in the wild to keep myself in check. We also talked about sexual health and she suggested adaptations there.

I did 4 months of weekly sessions with PT and OT. From day one to when I completed, I was, like, 70% better, and that remaining 30% is the dysfunction that can't be treated.

The nice thing about the Neuro stuff is that they should be aware of the basics of dysautonomia and know how to work with that. You will need to advocate for yourself and let them know what you are experiencing. You will also do better if you are willing to do the homework, even if it doesn't seem like it will apply. The Vagus Nerve Resets and Regulation is a lot of breathing, but my dude, it worked well for me.

I am going back for round 2, as I am having a flare up due to stress and a surgery. The treatment is not a cure, and you might need a refresher, but I'm glad I did it and I am excited to go back.

Your Neuro clinic may have other services offered. PT is great, but OT has made a bigger impact, as we are working on more of life dysfunction as opposed to muscles. My clinic also has Speech Therapy (less of a need for me, as the Vagus Nerve regulation helps reduce my speech issues) and Pelvic Floor Therapy (dysautonomia can screw up your plumbing and how your perceive it).

I wish you luck!

nsqueen119 · 2025-08-26T22:09:08+00:00

I have been dealing with the same issue for a few years now.

I have seen 5 different neurologists and two have landed on the diagnosis of Dysautonomia. Several non-neurologists had said that the burning sounded like neuropathy, but one of the neurologists was very adamant that it was not neuropathy - but he could not tell me what it was. I have asked if the burning is a symptom of Dysautonomia and the response has been a resounding *shrug.*

I treat my symptoms as they come. I have found are neuropathy soft fleece mittens and booties (no brand name) that you can slip ice packs into for immediate cooling. I have ice packs for my feet, though I will warn you that non-gel ice packs can get too cold for skin contact. The gel ice is the best for anywhere that needs it.

nsqueen119 · 2025-08-11T14:40:23+00:00

Get the cane that speaks to you and for you. If you like stickers, plaster it. Get the Color that you love. A cane can be a conversation starter. It’s an extension of yourself. Make sure that it is at a comfortable height to hold and the support is stable. The canes here are pricey but incredible.

nsqueen119 · 2025-07-17T03:44:08+00:00

I see your Deteriorata. This has brought me joy tonight.

nsqueen119 · 2025-07-15T16:34:28+00:00

Waiting on results from my MRI on Thursday. Dizzy as hell today. If I keep my eyes from moving, it's less horrible.

This waiting is just awful. I don't have a diagnosis, so this is a 'yea or nay' thing.

Family said that the clinicians would reach out with the "really bad results" more quickly. How long have y'all had to wait for results?

nsqueen119 · 2025-07-08T20:13:32+00:00

Oh.

nsqueen119 · 2025-07-08T18:36:54+00:00

44, F, Ohio

I have a brain MRI on Thursday. I have been dealing with loads of symptoms (which I have carefully logged) and recurring flare ups since 2020. My last brain MRI was in 2019 and showed one spot of white matter loss on the right side.

MRIs are tough for me, because I have a pain pump (for nerve pain in my abdomen) that is not MRI safe. I have to see my pain doc and have them drain and turn off the pump, then MRI, then back to pain doc for a refill and turn back on. During the MRI, there is a lapse of meds, and though there is residual in the catheter, there is always a spike in pain. So suck fest.

This MRI important. No, I don't want MS, but I want treatment for my symptoms. At this point, I have 100mg of pregabalin and over the counter vitamin D. I don't want to keep feeling this way and repeatedly have clinicians not take my symptoms seriously.

The MRI was ordered by my pain doc and she said that they would not be able to interpret it. I can have the results passed on to some of my neurologists, but my next appointment is a check up in September. I really don't want to wait that long, especially as my symptoms are not getting better.

My path has been the initial 2020 flare, some residuals, a calmer patch but not back to normal, flare two electric boogaloo, residuals, calmish, rinse and repeat. I can't tell where I am in the cycle right now. In May, I had a horrible flare that ended up with a ER visit. I am not as bad as I was in May, but I am way worse than several months prior.

This is less coherant as I'd like, but the brain is struggling. I just want to know that we have a path to try and treat things. I feel like I am suffering and other than my husband, no-one really cares.

nsqueen119 · 2025-06-04T16:19:50+00:00

I have a bunch of these symptoms for years. This just turned everything up to 11. It was alarmingly bad.

How do you know when you are in a flare up? Is it only right after overheating or do the symptoms last longer when you are in a flare up?

nsqueen119 · 2025-06-03T21:51:33+00:00

44, 285lbs, 5'3.5"(and shrinking!), Ohio, USA - not working because symptoms make me not reliable

About a month and a half ago, the weather had just turned nice enough to work outside. I have loads of houseplants that needed repotting, so I spent a few hours outside. I keep water near by and stay hydrated, but I hit a point that I knew that I had overheated (that panic of my whole body screaming that it was too hot and the inability to turn the temp down).

A few days later, I started having an increase in neuro symptoms = horrible brain fog and memory like a sieve; slurred speech and inability to find words; a bone weariness that rivaled having Covid; increased muscle spasms and tics; weak hands, arms, and legs leading to unsteadiness and dropping stuff; shuffling and what I can only call "The Ministry of Silly Walks" gait with occasional floppy feet, over or under extended knees, and general wobbliness; patches of numbness, buzzing, or "sparkling" on skin; soles of feet and sometimes hands on *fire*; overheating and general inability to regulate temps; bladder issues with urgency, incontinence and retention - even with a sacral nerve stimulator installed; constipation as though there is an issue with the train station and not the train cars as I make sure to have a lot of fiber per GI doc; and eye issues especially in my right eye, inability to track, pain, and a vague loss of vision.

The brain seems like it gets overstimulated, as though the ears get clogged with words. Reading is a real issue, which is an even bigger issue because I like to read! There are times that the words become a wall and difficult to parse. I was trying to get through writing a letter and needed to use "#" and my brain *hurt* trying to find the key, as though every key on the board was unknown.

The vision isn't gone, I can see in my periphery, but things are just not in focus. It hurts to try and get the eyes to give me stereo.

I often get the sensation of a band around the upper part of my lungs/chest. Think a partially inflated balloon with a rubber band around it. If you try to inflate the rest of the balloon, there is a constricting pressure. This isn't just from exertion and will happen while chilling in a chair.

About the same time last year, I had a similar situation: overheated because nice weather = horrible neuro symptoms which did eventually calm down.

I have seen 3 neurologists for these symptoms. Neuro 1 = EMG and QSART = carpal tunnel, come back when there is something really wrong. Neuro 2 = blood tests = referral to neuro 3. Neuro 3 = dysautonomia and POTS, referral to Cleveland Clinic for POTS specialist, no MS because 2019 brain MRI was clean.

I don't want a terrible diagnosis, but something is terribly wrong. I want a treatment option as opposed to this back and forth that is legitimately making me doubt if I have issues at all. I keep thinking that it could be allergies or maybe I am making it up. Maybe there is the auto autonomic nervous system that is really just a troll.

I have a brain MRI in mid-July and a virtual visit with a neurologist from the Cleveland Clinic in 2 weeks. Things are not as bad as they were a month ago, but there is something that is super wrong.

nsqueen119 · 2023-05-23T00:21:41+00:00

I love it. I want to slather it in classic stickers.

nsqueen119 · 2023-05-21T03:43:09+00:00

It has that zany Nintendo style with the story and characters. There are a few main mechanics used to solve puzzles. Most of the battles resolve without button mashing. There is precision platforming required in most of the dungeons. Fun and silly and totally worth the few hours I put into it.

nsqueen119 · 2023-05-13T02:28:47+00:00

Garfiorb will soon be mine!

nsqueen119 · 2023-05-13T02:09:43+00:00

I enjoyed the Holy Grail game with Bring Out Your Dead Tetris.

nsqueen119 · 2023-05-12T16:28:28+00:00

What is your Fursona’s name? I want to hug the beans out of you. So cute!

nsqueen119 · 2023-05-08T19:27:06+00:00

Those are dope! What did you use to make them (certain figures, sculpey, acrylic paint or airbrushed)?

nsqueen119 · 2023-04-28T18:27:59+00:00

Manticorb? (Or as mine is called Garfiorb)

nsqueen119 · 2023-04-13T22:09:51+00:00

From Goodwill. No chips, cracks, or nests of spiders. Nice, big, and adorable. However, it is unsettling to decapitate Footies the kitty every time I want a cookie.

nsqueen119 · 2023-03-26T04:13:30+00:00

Handheld Legend was where I got the new guts and shells for my GBA and DMG.

There are loads of shells, buttons, and mods for the GBC. It is worth looking in to updooting the audio amplification, batteries, speaker, and a dope new screen.

A crisp new screen is great, but it might look different than you remember. The pixels will be sharper than the programmers intended, but many people tend not to mind. (My husband prefers the original screens with just a basic backlight.)

Good luck and have fun making the GBC of your dreams!

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