I feel like as soon as I empty my bladder, I have to go again! Its soo annoying

Hi Everyone! I recently started a petition with the hopes of making some change in the way ME and POTS are treated in the hospital setting. It would mean the world to me if you signed. I plan to take this to New York's Governor, Kathy Hochul, and have a great endorsement in the works :) petition

Or cold weather

So I’m starting to realize part of my issue might be that beta blockers and guanfacine lower my BP when lying down. My tilt table test just showed a high HR so Drs have only been focused on keeping my HR stable. Has anyone had this happen? My BP is fine when I stand. Are fluids the main way to address this? Just curious if anyone else has experienced this and what helped. I’m taking guamfacine and I think it helps some symptoms but it might be lowering my BP when I lay down, especially in the morning. In fact it doesn’t seem to be an issue in the afternoon.

hello! i recently had to quit my job that required me to stand for long periods of time without breaks. i am in desperate need of money but unable to stand for a while or walk for over 20mins. i am having a lot of trouble finding potential work. when i worked at my job i recently quit, i had to take 1000mg of ibuprofen and 1000mg of tylenol to get through a 9.5 hour work day (during summer). i really need a way to make money. i cannot do many art related things, so pretty much anything commission based is off the table. what jobs can i work? i desperately need money.

any and all advice is appreciated greatly!!

I'm starting to have vision issues like seeing fog or something moving in the background.

I was given 2mg slow release melatonin (also on low dose mirtazapine, been on it for weeks) because while I was sleeping on mirtazapine, I wasn't sleeping early enough and doctor wanted the melatonin to help shift my circadian rhythm back to normal. Yet the last 11 days my sleep has been absolute shit, super weird dreams, waking up like 5 times a night and not always being able to fall asleep again, some stomach aches at night. I'm going back to the doctor but in the meantime wanted to ask if anyone's had BAD experiences with melatonin.

Hi everyone!
I’m 31F and currently dealing with suspected dysautonomia/POTS and inappropriate sinus tachycardia (IST). I need to have a tooth extracted soon, and I’m honestly pretty nervous about the procedure, especially because of my heart rate issues.
I currently take ivabradine 2.5 mg twice daily for my heart rate and oxcarbazepine 600 mg nightly for a mood disorder.
I’ve had episodes where my heart rate suddenly spikes quite high, sometimes even while resting or sleeping, along with dizziness, weakness, and feeling faint. I’m still undergoing cardiac testing to understand everything.
I’m trying to figure out which sedation option might be better tolerated with my conditions, whether that’s:
Local anesthesia (possibly without epinephrine)
Nitrous oxide (laughing gas)
IV moderate or deep sedation
General anesthesia
I’m also concerned about how sedation might affect my heart rate and blood pressure, whether IV fluids are typically given, and whether my medications could interact with anything used during the procedure.
I’m currently waiting to hear back from my doctors and plan to discuss everything with the dentist before making a decision.
For anyone with POTS, dysautonomia, or IST:
Have you had a tooth extraction or other dental procedure while dealing with these conditions?
What type of anesthesia or sedation did you receive?
Did you experience any heart rate or blood pressure issues during or afterward?
Were you given IV fluids or any special monitoring?
Did you need to adjust your medications beforehand, or were you able to continue them?
Did you have your procedure at a regular dental office, an oral surgeon’s office, or a hospital?
I’d really appreciate hearing your experiences, especially if you take ivabradine!
I know everyone’s situation is different and I’ll be following my doctors’ recommendations. I’m mainly hoping to hear how others handled their dental procedures and what helped them feel comfortable and safe.
Thank you! ❤️

Hi,
If anyone sees a vascular specialist involving with POTS/dysautonomia NHS please recommend.
For venous pooling issues
Thanks

Hi folks. I have a tilt table in two weeks and in the meantime have been trialing Midodrine, Allegra and Pepcid. The meds do seem to have helped quite a bit in regulating swings (I no longer swing 5-6lbs and 1-3” each day, and my PR is more stable). I also started Singulair a week ago which has already started helping my breathing and my joints feel less swollen.

My referring rheumatologist said I don’t need to stop meds, but has anyone else done that for a TT test? I just want to make sure I get proper, true body results. I’m so tired of “negative” test results. The changes I’ve seen with the meds do seem to prove there’s something going on at least.

I’ve tracked my resting PR from lying to standing and it goes from 58-62 up to 110-116 and settles around 92-101 but when I added in Singulair it’s seemed to stabilize more. Which is great! But…will it affect my testing results…

Hello all,

I had a tilt table test in which my HR went up by 40BPM but the report said it was just anxiety. I don't understand because that was the first time I was calm in over a month due to some house issues. I feel so confused. Any advice? I see my cardiologist soon to talk about the test.

I have POTS, hEDS, and fibro. I am debating getting an Oura ring, but is there a better option for those with chronic illness?

Hello! I have vasovagal syncope and general autonomic dysfunction from a TBI and possibly long covid. My physiatrist and electrophysiologist have both referred me to integrative medicine while I search for an autonomic neurologist. I started acebotolol last month and use compression and up to 9000mgs of sodium chloride tablets.

My question is, my baseline dropped dramatically over the summer due to the heat and a bout of flu. I have ridiculous vasovagal triggers now like tight pants, gas, and sneezing and I don’t tolerate standing and using my arms much for long. Getting dressed, cooking and cleaning are a nightmare. My wife has a job that is very demanding and we’re having trouble keeping up with the house. I’ve lost weight by accident a few times just from being unable to cook and eat until she comes home/not being able to plan/being too tired/sick/presyncope etc.

I am feeling so lost on how to budget my energy and how to manage my symptoms and life. My EP just said to lie down whenever I’m symptomatic but that’s so often these days. I was housebound over the summer and I have days where I’m have a vasovagal trigger I can end up bedbound and stuck in a sensitive presyncope state every time I get up, especially if I overexert myself too many days in a row.

I’m wondering if some kind of specialiazed OT, PT, and/or in home support could help me get out of this mess, but I don’t know what exactly to ask for. I think my cardiologist and physiatrist would advocate for me if I needed them to. I’m just not sure where to go and neither are my doctors seemingly. Let me know if you guys have any ideas or have had any success with different therapies/treatments, or getting in home supportive services for things like cooking or laundry. With dynamic symptoms where on a good day I could be pretty independent and a bad day completely dependent I feel like I might struggle to be taken seriously but this has not been sustainable.

So its been about 2 to 3 years being rediagnosed with LEMS and on firdapse. Ive really made good progress on my own because financially I haven't had physical therapy in some time.

Lately im coming to the certainty that the meds both on and off cause hunger pains. When the meds start too early, it makes the abdominal overactive due to the nerves connecting to the muscles. But oppositely after I sleep, the meds have worn off and the abdominal wall loses its strength and posture creating a sensation of hunger. So damned either way I guess.

Hopefully anyone else experiencing hunger pains can relate and work out a snack pack system to help themselves.

I'm not sure if any of you have the sugar and artificial sweetener type sensitivities that I do, but a lot of pre-prepared beverages are just all wrong for me because of that. And I also get cramps/RLS, so potassium is a big deal to me by default.

Well, I am not going to get into the specifics of why you need to be getting a balanced amount of potassium with sodium for your heart health. But... It's important, especially when ingesting heavier amounts of sodium.

Guess what Morton's lite salt is? Half table salt, half potassium chloride salt. 😁

Use 2/3 water to 1/3 fruit juice, then lite salt added to taste/need.

This adds just enough sugar to help tie together the electrolytes and aid absorption. But not so much that it makes me feel dehydrated or like my blood sugar is wobbly.

I prefer this so much to anything else that I've tried that I now make sure to bring a bottle of it with me when I go out. It's precisely what my body has been craving.

I hope this helps someone else! I will keep on sharing things I do to help myself if anyone is interested in reading them. I'm a little shy about sharing my remedies, but I was raised in a family that used to sharecrop and had to come up with their own means of maintaining their health. Ended up becoming a giant nerd about holistic health in the pursuit of figuring out what made my family so different. I'm only now starting to become obvious at 42yo because I was maintaining my condition for so long without medical intervention. Up until it almost killed me, lol. Now the medical folks are scared and willing to finally listen to me because they ignored me warning them something was seriously wrong and that I didn't know how long my remedies would hold whatever it was at bay for YEARS, lol. They can't say I didn't warn them that something was seriously wrong and that my remedies weren't going to save my life in the end, lol.

Hello all

I’m new to this forum!

I only heard the term dysautonomia last week after being exacerbated by my body.

The catalysing event was where my partner and I had a high protein dinner of ribeye steak, some reheated spiced chicken thigh from the previous day, and a Bao bun (also reheated). I started sweating during the meal, carried on sweating further for a long time after the meal. I went to bed a couple of hours later, following a shower, and I felt so alert. I felt as if I’d drunk 20 double espresso’s. I did some diaphragmatic breathing as my whoop showed I was in a highly stressed state. My gut was beating.

I thought, this is not normal!

The previous week I’d visited a beautiful little restaurant from the Michelin guide, and my main course had a few Jerusalem artichokes. I then went with my friend to watch Mamma Mia (the musical) in the west end and my gut started to gurgle. After the interval my gut went full on cramping. I was in the middle of the row in the stalls. I’m also registered severely sight impaired and my dog was being looked after by staff. I was stuck! I had bouts of cramping that were worsening. I then started planning how to get home safely, thinking I’d walk to the savoy after the show to get an uber as less likely to be refused if I have the doormen to protect me. Then, the idea of making it to the savoy felt impossible.

I made it through the show (just) and was guided to the disabled toilet. Managed to get an uber from alongside the theatre and whilst the driver attempted to refuse me, I was using the record audio function in the app and he knew there’d be severe consequences if he didn’t take us. Got home and was extremely ill for 3 days. Had severe cramping, buscopan didn’t touch the cramps. I had a bout of bloat as my gastric system couldn’t take the pressure build up. It was awful.

After these two events, I thought that this can’t be normal.

I’ve experienced hyperhidrosis for decades. Explored surgery when younger and a parasympathectomy. The surgeon advised for my widespread issues it wouldn’t work and recommended I sauna 3+ times a week to get the fluids out of my body.

When I was a young boy I used to experience blackouts when standing (I still do) and my GP recommended I pump my calves. Also as a boy I regularly saw a physio as I have a bad neck. The physio said I have a hyperactive nervous system as when they touched me my skin turned red.

My guide dog and I work in a hospital. When I visit my patients in a ward and stand to talk to them, I sweat.

I was at a conference a couple of years ago and the most interesting talk was very popular so was standing room only. I tried standing and gradually became hotter and hotter. I sweated through my clothes and had to leave. I felt utterly overwhelmed.

I cant stand on the tube for similar reasons.

I was prescribed medical cannabis for spondylolisthesis and some strains would result in a highly activated system, a feeling of stress and panic, and made me feel awful. I’d also sweat profusely when trying to sleep.

I wondered whether all of these things could be related. Started to dig into my symptoms and dysautonomia popped up. Specifically a complex form of 3 different types of hyperadrenergic dysautonomia, mast cell, dermatographia. I also have ADHD which can be related.

I’ve spoken to my GP and they agreed with my hypothesis and I told them I wanted a referral to Prof Aziz at Bart’s. They did say there’s a chance of referral being rejected.

Has anyone experienced a referral to Bart’s and what is the chance of rejection?

It feels like after decades I’m starting to understand the oddities of my body and really want some clarity on whether my hypothesis is correct.

(Sorry. Difficult to abbreviate this all!)

I usually get extremely cold to the point I’m shaking so much I can’t sleep. I wear a 9 tog/5tog (usually layering 2 4.5 tog duvets or a 4.5 and 1tog duvet) and a fleece blanket but then have to wake up to take a layer off as I’m too hot or wake up sweating.

With winter coming is there a better duvet or anything to use to stay warm when going to sleep but not overheat at night which wakes me up. I try to avoid turning on the heating as that can make the room too hot and stuffy. I am based in the UK.

Does it make a difference what I eat?

Has anyone gathered any helpful info from a sleep study? I know sleep studies are not used to diagnose dysautonomia, but I wonder if anyone has had a doctor look at results and find anything that pointed them toward or away from a dysautonomia diagnosis?

I have presumed dysautonomia (not POTS). I have exhausted all available local testing to me and am being seen at Cleveland Clinic a few times in the next 6 months. My local neuro has suggested a sleep study, but I’m not sure if it is worth the time and cost. Anyone had a decent experience with this? (Or terrible?)

I want to get some blood tests done

i have a large majority of the dysautonomia symptoms. OI, dizziness, post-meal crashes, unrefreshing sleep, fatigue, etc etc etc. i just got into medical school. i am extremely anxious about handling this during school and am taking the next 9 months to focus on my health. i am worried i wont make it through, but i truly am praying that i do. my only sliver of hope is that i was able to get in while studying for the mcat, being a student, working as a PCT on a busy floor, volunteering at 12 hours clinics, etc. i want to be a doctor that specializes in this stuff. actually be informed and understand that this isn't a made up condition. do research to help advance treatments for pts with dysautonomia and all the comorbidities. i'm not saying that good doctors don't exist, of course they do. there are so many out there that truly care about their patient's, work with them until they find the exact combination of treatments that help, and understand this condition. but they are few and far inbetween which is what makes it so hard for us.

I want to start by saying I haven’t been diagnosed yet. I’ve been chronically ill for years now and recently I’ve been bed ridden for weeks. I haven’t worked in years. My symptoms started after Covid. I started having uncontrollable shaking and fatigue. If I wasn’t shaking like a chihuahua I had this internal shake. This lasted for years and I felt sick always. Then other symptoms showed up. I noticed I couldn’t take a hot shower or else I would start shaking and feeling like I had low sugar or something. Just felt 10x worse afterwards. I’ve been to the ER 10 times and my blood tests are always fine no Issues. Then the lightheadedness started. It would happen when I stood up occasionally (not an issue it happens to everyone) but then it started happening every time and it would get progressively worse over time. I’ve been prescribed propanolol for the shaking which is supposed to help with the shaking but it honestly doesnt do much. At my last visit to the ER I was so lightheaded and dizzy I couldn’t stand up I had to be wheelchaired in. My BP was 165/100 and my heart rate was in the 130’s. As I was laying there my heart rate eventually went back down to a somewhat normal level but as I stood up to do a urine test my heart rate shot back up to mid 130s. Over 30-35 bpm just by standing up. Recently I’ve had a new symptom I take a bite of something to eat and I feel SO FULL immediately and my food sits in my stomach for ever. I feel like it’s not being digested or something I just feel bloated all day every day. This has been going on for months now. I don’t know everything about dysautonomia but from what I’ve read it seems like I have every single symptom. I’m currently in bed I can’t even stand up I’m so lightheaded. Even turning my head causes the sensation. I’ve got a recommendation to see a cardiologist and a neurologist but I need to qualify for Medicaid before I can do anything as I can’t work to make any money. I’ve tried the increased salt intake, and compression socks but nothing seems to be helping with the lightheadedness. Anyways I share a lot of symptoms with a lot of people in here and I know how miserable it is. I’m sorry I just needed to vent a little bit I hope I can get a diagnosis and work on feeling better and I hope you guys do too!!