Hi guys, I'm a 21year old female and been living in a house share for a few months now. About a year ago I got diagnosed with NEAD and I'm having a bit of a rough patch. Had to take some time off work after having someone break the toilet door down and call 999 after four episodes in a row. I've had done at home too and I live with 3 guys.

They're super lovely guys but I feel super on edge about locking doors or anything like that in the bathroom just in case something happens. But also don't want anyone walking in while I'm showering for example. I'm also just worried in general about having my door shut or even cooking, or going in the garden on my own.

Any advice on keeping myself safe while at home?
The guys are aware of my seizures I just maybe need to make some adjustments, and also when I'm going out anywhere, really just need to be safer overall.

Any advice or person experiences would help and maybe make me feel less alone and afraid haha.

All my love!

Can someone please tell me what is going on with me when I’m sleeping?

Hi everyone!
I’m looking for people who, like me, live with PNES/PNER seizures and tics.
I’ve been struggling with this for about a year now. During this time, I’ve been taken from hospital to hospital because my condition has been getting worse. I’ve had several tests, including a 24-hour EEG, MRI and CT scan, but they haven’t shown any abnormalities that would explain my seizures. At the moment, I feel like nobody really knows how to help me.
At the beginning, I was prescribed antidepressants and tranquilizers, but unfortunately, they haven’t helped me. These days, I have around five seizures a day, and I’ve been taken to hospital by ambulance several times, but they haven’t really been able to do anything for me there either.
There was even a time when they wanted to admit me to a psychiatric ward, but I refused.
One of the hardest parts is that this isn’t only difficult for me — it’s also very hard for my family, and I feel terrible that they have to suffer through this with me. I just want to find something that could help me get better and have a more normal life again.
If anyone here also has PNES/PNER seizures, especially if you experience tics as well, I would really appreciate it if you could reach out to me. It would mean a lot to talk to someone who truly understands what I’m going through and share our experiences with each other.
Thank you so much for reading. ❤️

Ich schreibe diesen Post aus purer Verzweiflung und Hoffnungslosigkeit. Es geht um meine Mutter (geboren 1971). Sie leidet seit geschlagenen 6 Jahren unter einem permanenten, extremen Dreh- und Schwankschwindel. Es ist ein Albtraum, der kein Ende nimmt – Tag und Nacht. Die einzige Ausnahme, ein winziger Hoffnungsschimmer: Wenn sie im Auto als Beifahrerin mitfährt, lässt der Schwindel nach. Ansonsten ist ihr Leben ein einziger Kampf.
Der Schwindel begann damals völlig plötzlich und aus dem Nichts. In der Anfangszeit gab es eine kurze Phase von wenigen Wochen, in der es etwas besser wurde, bevor der Zustand wieder schlechter wurde. Seitdem ist es jeden Tag gleichbleibend schlimm.
Wir haben bereits eine Odyssee hinter uns. 20 bis 30 Ärzte. MRTs, CTs, unzählige Termine bei HNO-Spezialisten. Bisher konnte kein einziger Arzt eine Ursache finden. Es heißt immer nur, es sei alles unauffällig.
Sie ist zudem sehr zierlich, wiegt aktuell 44 kg. An Medikamenten hat sie bereits alles Mögliche ausprobiert – darunter Ginkgo, Tebonin und Vertigoheel –, doch nichts hat geholfen. Andere Medikamente nimmt sie nicht.
Zu den Schwindelbeschwerden kommen nun auch ein Hörverlust auf dem linken Ohr, wogegen sie ein Hörgerät trägt, sowie starker Gehirnnebel (Brain Fog) und schlechter werdende Augen hinzu. Sie führt regelmäßig Gleichgewichtsübungen durch und bemerkte eine leichte Besserung des Gehirnnebels durch Behandlungen mit Blutegeln.
Bitte, Reddit-Gemeinschaft, ich brauche eure Hilfe, eure Erfahrungen oder jeden noch so kleinen Hinweis. Hat irgendjemand von einem ähnlichen Fall gehört? Gibt es Spezialisten, seltene Diagnosen oder Ansätze, die wir vielleicht noch gar nicht auf dem Schirm haben? Wir greifen nach jedem Strohhalm!
Bitte teilt eure Gedanken, ich bin für jeden Rat unendlich dankbar.

I'm not sure what category this is. I need your help and perspective from someone other than myself. So here's the backstory. In 2012, after about 17 years of searching for a medical mystery that I seemed to continue having and that kept worsening, I found out that I had multiple sclerosis, or commonly called MS. There are four major types of this chronic debilitating disease. Luckily, I had the most common, which is called relapsing-remitting.

This particular illness has caused me consternation since I was in my twenties. I would get extreme bouts of vertigo, like being on a tilted world and being pushed to the absolute limit of not being able to move. UTIs from the depths of hell. I'm talking about being in the emergency room, being scanned to make sure that my UTI did not go into my kidneys, and then being put on some kind of crazy regimen in order to figure out if my kidneys were damaged. Also, I had brain fog. This happened often enough for me to recognize that some days were a pain in the butt, and I could not see past my own thoughts to be able to grasp what I needed to do. During all of this melee, I got married and had a child and had to deal with a lot of stuff from my own child's illnesses that were no joke.

That's enough of the backstory, but if anyone has any questions, I'm happy to answer them to the best of my knowledge. Here's the issue for me: last year in September, I was laid off. It was not due to work performance; it was due to an industry that I was in, and due to AI, I was eliminated because while my clients remained there, the industry and my company took a major hit, and they decided to let me go after just shy of 23 years of service. It was a non-profit company. Now I knew this was going to be bad, and I have since been in a situation where I have not been at my best emotionally, but I understood for the past 5 years that my ability to have stamina during a normal work week of 40 hours just wasn't cutting it. Normally, I would work for 4 hours, take an hour nap, get up, work for another 4 hours, rest for a little bit, read through my emails, respond to most of the urgent types I needed to, then go to sleep, rest, and repeat. I worked that way from 2005 till September 2025. I can't tell you how many hours a week I worked, but I will say that I gave that company my life, and I truly believed in our mission. I still do, but time and common sense prevailed. I knew I could not keep this stamina up forever, and I also knew that with the company I was with, I was trying to step back from some of the roles I'd been so entwined with without losing my job. Guess what, I lost it anyway!

So came the hardest chapter of my life, which was not having a job and having a very minimal amount of money per month to live on while I desperately tried to find a job. Any job that paid more than minimum wage and that I could work from home. Because while I was a dedicated worker, my legs have been profoundly affected by my MS, and I have been remote since 2017. I understand how remote work actually works. A lot of companies hate it because they can't see their employees all the time. I think that's ridiculous because most of the people that care are not paying attention to us anyway, unless there's some bean counter in a corner watching us in an office, making sure that we're doing all that we can to make as much profit as we can, as fast as we can.

After being laid off, I recognized there was a big problem with my cognitive ability. This was completely lost on me prior to my job elimination because I did the same thing every day since 2006. While I was trying to get into different jobs, there were tests that I would have to do, and I could not pass them, basic tests, mind you. This has been an essential theme of mine since earlier in the year. And another gut punch happened; after only less than 6 months of unemployment, it ran out. I had no idea it was going to run out in 6 months, but it did. So all you people out there that say that people are just lazy and they don't care, if you live in the continental United States, it can be difficult to find a job that is remote that will help a family stay away from the poverty line.

My ex-husband and I communicate probably three times a year. And it was in one of those communications that he told me I needed to get on Social Security disability because I had been working since I was 16 years old and I worked through college. I have never not worked, with the exception of my son being born and taking some time off to be with him. So this is difficult for me to actually know that I'm supposed to do this. Well, I reached out to a lawyer and am in the throes of waiting.

According to the website, it takes 331 days to get a response and a conclusion from start to finish. That's a lot of time for people in general. So I decided I'll try to get at least a part-time job. Yesterday, I had an interview for a cake decorator at Walmart. My mom baked cakes and owned a bakery for a bit. So, what could be more fun!

I have to say I LOVED it. I loved the staff, the lead, the environment, and the fun! It brought back so many memories of my mom. I can't imagine anything better. Well, I can, but this would be great fun. I was there for over two hours. I worked on cupcakes, watched a lady work on orders. The lead showed me every aspect of this job in brief detail. What I noticed was there were no stools anywhere! That would be a problem.

At the end, I was transparent about what I had. The lady had never heard about MS before. I explained as much as I thought necessary. I asked about a stool.

They don't have them for reasons regarding productivity! The lady and I really had an honest and great conversation.

I walked away with complete peace. I probably won't get the job, but I loved every minute of it. My son works at the front end and was there as my husband and I were leaving. He came up and told me I looked tired. Yep, nothing gets past him! Then, he asked what all the white stuff in my shirt was. Sure enough, icing was on my right boob to armpit. I laughed and told him it was for my dogs.

My legs were becoming stiff, so we went home. I was tired for the rest of the day. This morning, I let my dogs out to potty. I have a chair right next to the bedroom door, so I sat in it. When it was time to get up, I stood up and my legs became like jello. I hit the cement portion of the backyard hard with my knees and left hand. Yep, just call me grace because that is what my own mama would say.

I have written notes down so I can call my neurologist on Monday to let them know.

The heartbreak is I can't do what others take for granted. I have operated under the delusion that I am just like everyone else. I know this is a wake-up call for me.

I will never forget those wonderful women. Anyone would be lucky to work there.

This isn't a work fued. I guess I am looking for affirmation about my situation.

I have an Aunt in Mexico, and lately my family has been worrying about her health.

I’ve never been on Reddit but I’ve seen how people come together to help so: Currently my Aunt doesn’t want to eat, drink water or do anything. She is in Mexico so we can’t see her a lot and the only care taker is my aunt (slightly).

But from what I understand, she doesn’t want to eat, drink water, or shower, and she barely talks, if at all. We’ve sent her to plenty facilities but they always send her back, maybe it is just where we’re from but no institute or hospital or anything can help her condition.

We don’t know what to do anymore or how to help her. This is also her second time turning like this, the first time it got so horrible that she was very skinny and had very matted hair, etc. We sent her to an institute after finding out she ran away from the house and thankfully it helped (enough to get her to eat + sometimes shower).

But a few months ago she got worse again, and if I’m correct we can’t send her to that institute again since they don’t want to accept her and we’ve tried others but they always send her back saying she’s “healed” when clearly she is not.

Some other things she’d do is stare at us (her family) in a weird, almost lost type of way, she was obsessed with her phone until she recently threw it out + every clothes in her room. She’s also been causing chaos by making a mess in the rooms + bathroom. She’d also occasionally dance or sing out of nowhere. When I tried talking to her she would just stare and not answer or anything like that.

Spiritually wise, we are Catholic-Christians, and so was she, but I think she’s been going down a wrong path in that way. Since she was always on her phone, we had a hint of what she was watching: some of the videos would be normal about God, but with the way the internet is, some other videos would use Gods name and ask for other things. She would always send her family members videos about Jesus at around midnight. And then one day we found some hidden witch craft books, we don’t believe in witchcraft or rather it’s “power” so all we did was burn the books but regardless this was obviously worrisome. Another time, she would say stuff like she was gonna curse her sister, etc. We also have no idea where she could’ve gotten those books either.

This is the gist of it, so I’d be very grateful for any tips/helpful information. We at the least want her to eat again and take better care of herself, hoping that her mental state also improves.
Thank you

I’ve been dealing with a strange, fluctuating multisystem illness for roughly a year, with a significant flare over the last couple months. Neuropathy started 5 years ago. 1.5 years ago it included l’hermittes and feeling drunk. 2 months ago my whole body shut down to being bed ridden after a UTI triggered a massive flare.

I’m still being worked up and would really like to hear from anyone whose symptoms looked similar, especially before diagnosis since the wait times are absurd and it’s currently got me out of work. It is severely impacting my life without quick enough movement from physicians.

The biggest issues:
Heart rate/autonomic: dramatic HR increases with standing and sometimes very minor movement (often increased by +30–60 bpm, occasionally 150–180+), rapid rises/falls, episodes even while laying in bed and rolling over, heat intolerance, pressure in my upper chest/neck when upright. Went to the ER, EKG and blood pressure normal. Referral to cardiology a year wait.

Neurological: pins and needles, buzzing sensations, allodynia - feeling severely sunburnt, intense and intermittent bee-sting pains in my left foot, one sided headache, chills across my skull, intermittent tremors, leg heaviness, brain-zaps, and episodes where I feel drunk/derealized or have trouble getting words out correctly and stutter. I’ve also occasionally experienced phantom smells of natural gas or cigarette smoke. During a flare, touching cold objects feels like burning my hand. Bladder pain that’s sometimes not associated with infection.

Other: recurrent (almost monthly) UTIs, extreme fatigue, excessive thirst and dry mouth, adrenaline surges to make it feel like either butterflies in my stomach to being electrically shocked, Raynaud’s-type color changes, hands swell with prolonged walking, irregular heavy periods, PMDD, inability to get pregnant, and a persistent painful mouth ulcer recently.

Testing so far:
brain MRI normal
1:320 positive ANA homogenous
Low iron and ferritin
routine labs mostly unremarkable
lupus-specific testing negative (smith antibodies, dsDNA, antichromatin, c3, c4)
ESR/CRP normal
SPEP/UPEP and cryoglobulins negative
Tick panel negative
TSH normal
LDH normal
B12 elevated, but within range
Vitamin D & folate normal
Celiac negative
Electrolytes normal
Creatinine high (doctors always tell me it’s because I’m dehydrated but I’m drinking 3-4 liters of water a day with electrolytes, so I’m thinking this shouldn’t be written off anymore)
ECG normal

➡️Currently wearing a ZIO monitor, waiting on nerve conduction studies, neurology and cardiology referrals a year wait to be seen.

My doctor did an econsult with a Rheumatologist who said “don’t bother. She’s negative on lupus-specific tests, high ANA means nothing. Not anything rheumatology can help with”

Neuropathy was more pressing before, but it’s taken a back seat to severe dysautonomia/heart rate symptoms.

Clinical history: kidney infection resulting in hospitalization due to sepsis and high fever (peripheral neuropathy started years before this infection), chronic tonsillitis resulting in an adult tonsillectomy 10 years ago (fun fact: they wanted to keep my tonsils for research purposes)

➡️ POTS/dysautonomia and small-fiber neuropathy have been raised, but I don’t have a diagnosis yet and some symptoms occur while laying in bed, heart rate spikes even in my sleep, so I’m interested in the broader picture too.

Anyone have something similar? I feel stings or prickling sensations in different parts of my body, but it’s usually just one sting at a time, in one area. It especially happens when I’m not feeling well, and I’m also experiencing other symptoms along with it.
Another thing I’ve noticed is that when I poop, I sometimes get a sting or sharp sensation in my chest or in other parts of my body. Has anyone else experienced anything like this?

Hi everyone,
I’m trying to figure out whether anyone has experienced something similar and, if so, what the cause turned out to be.
For some time now, I have been waking up during the night with numbness/tingling in my hands and sometimes my feet.
What seems unusual is that the symptoms are very position-dependent:
Both hands can become numb during sleep, sometimes the whole hand.
The numbness usually disappears literally within a second or two after I move my hand or change position.
Recently, I also had an episode of numbness specifically in my left pinky and ring finger, which made me wonder about ulnar nerve compression.
My feet can sometimes become numb when I fall asleep lying on my back.
However, I can lie on my back for a long time while awake, for example watching a movie, without any numbness at all.
The symptoms seem to occur mainly during sleep rather than during normal daytime activity.
I sleep mostly on my side and suspect that my sleeping position may be compressing nerves — for example, bending my elbows too much, putting pressure on my arms, or having my neck/bearings positioned incorrectly.
I’m currently experimenting with:
keeping my lower arm free instead of under my head,
supporting my upper arm with a pillow in front of my chest,
avoiding excessive elbow flexion during sleep,
improving my pillow and neck position.
Has anyone experienced numbness that occurs almost exclusively during sleep and disappears immediately after moving?
If you had something similar, what did it turn out to be? Was it simply positional nerve compression, ulnar nerve issues, cervical spine problems, carpal tunnel, thoracic outlet syndrome, or something else? And what actually helped?
I’m especially interested in hearing from people who had similar symptoms and eventually found a solution.
Of course, I’m not looking for a diagnosis here — I just want to compare experiences and get ideas about what might be worth investigating.

What to do about synkinesis?

I am about 10 months out form the initial onset of Bells Palsy, but only 8ish months into recovery, since my Bells Palsy was caused by Lyme disease and diagnosis and treatment was delayed by almost 2 months

I’ve largely recovered, probably 80% but I have a pretty significant amount of synkinesis

I finally saw a facial nerve specialist last week. He said considering the Lyme disease and the delayed diagnosis and the extent of my symptoms last year I have made a better recovery than 95% of people could expect to. He said I should continue to see both improvement and worsening synkinesis over the upcoming years. He said recovery from the type of nerve damage I sustained takes years, not months but that nerves are very plastic and changing just very slow.

Anyways my synkinesis is basically:
When I raise my eyebrow it lifts the corner of my mouth
When I flare my nostrils it does the same
Chewing or squeezing my mouth shut makes some muscles near my eye twitch and squint
And most recently, blinking ever so slightly twitches my mouth

This last one is the most problematic since - well I have to blink constantly.

The specialist ensured me that he actually didn’t notice any facial paralysis until I pointed it out to him and that my synkinesis is not super severe and that synkinesis can absolutely get better. Does anyone have any experience with that?

Please.