#dysautonomia awareness challenge

[headpainmigraine]

LOL, that Dysautonomia Awareness Challenge has gone just as I expected - nothing since the 4th.

Anyway, here's Wonderwall

5) Day in the life with Dysautonomia

This one is difficult, not just because dysautonomia is a dynamic condition, but also because I have 500 other things going on that impacts my day in similar ways.

I can tell you that it means I can't stand for very long, even indoors.

I end up sitting on the floor when in conversation with someone, unless there's a chair nearby. If I go out (ha) that used to mean sitting on the filthy shop floor, but now I have a wheelchair. Otherwise I have to hang onto my sister or my mum on short trips outside.

The dizziness and faint feeling makes me feel weak and feeble, which is REALLY annoying. A spell can hit at any time, so I have to either do little projects I can drop in the middle without too much stress, or have someone assisting who can finish the task/get it to a stopping place without me.

Can't eat, tremors. Can't stand, tremors. Can't hold still, tremors.

Can't go in the back garden for any length of time without making sure there's a chair out there or bringing my rollator.

No spontaneity. No independence.

This question is depressing, next!

6) Your medication regimen.

I take a few meds, but the one I take for my dysautonomia is ivabradine. One in the AM, one in the PM, to slow my heart and hopefully help with the palpitations.

Eh, so-so. I certainly get the side effect of light suddenly glaring when I move outside of a dark room.

Otherwise, I used to drink a lot of water, but fell off that wagon. I have compression stockings, but only under the knee because I can't manage the full tights version I was supposed to wear.

All in all, my pandysautonomia isn't really being managed by meds.

7) Your favourite products to manage your symptoms.

Products? Compression socks help, but I hate them. I like Lucozade Sport for electrolyte replenishment, but it's too expensive for me to have a constant supply.

I like 4Head strips for when my temperature regulation goes out of whack.

Uhhhh… it's not really managed, tbh.

8) Favourite way to hydrate.

Pepsi Max.

But no, I like the cute water bottles and all, but I don't have the spoons to wash them out and they get funky and then I don't use them.

Lucozade Sport, again, is good, but, again, it's too expensive for me to rely on that alone.

I got electrolyte salts, but I think they triggered a migraine.

9) Your "saltcuterie" board/salty snacks

UGH, this one pisses me off.

For fuck's sake, dysautonomia isn't just POTS, and it isn't just POTS with low blood pressure, either.

People with high blood pressure, or just all over wacky blood pressure, can also have dysautonomia. Hell, can also have POTS.

And high salt diets are contraindicated for people with high BP and dysautonomia.

I feel like shit like this is just quirkifying dysautonomia into a collection of hashtags and memeable pics.

And what's more, leaves huges groups of people who DO have POTS or other dysautonomic conditions thinking that they can't possibly have POTS because they don't have low BP like the entire internet tells them they need in order for a diagnosis.

Seriously, you can't diagnose this kind of thing online.

You can't 'informed self-DX' dysautonomia.

Can you suspect it? Sure. And if doing all the 'typical' POTS things like increasing salt in your diet and wearing compression socks helps, go for it.

But you'll never know if you actually have POTS or if something else is causing your symptoms, whether it's another form of dysautonomia or something else altogether. Like just having low blood pressure.

And I know that's easy to say, like seeing a doctor for this is simple when it's not, but seriously. Some things you just can't diagnose yourself online.

10) Favourite pair of compression socks

I hate them all. I was supposed to get a pair prescribed, but my GP and pharmacists are all too incompetent and stupid to understand how to do so, so I just bought the right strength myself off Amazon.

THEY SUUUUUCK. I struggle to get them on, they aggravate my dermographia and I can't regulate my temperature properly in them because they make me feel hot all the time.

Sucks.

11) Your mobility aids.

I use a rollator inside the house sometimes, in places like the kitchen where I need to stop and talk to someone but don't want to sit on the cold, hard floor. I use it outside in my back garden so I can walk around a little but not have to crouch or sit in the grass, given that I can't just stand there for very long.

I used to have a manual wheelchair, but I don't have the strength to push myself, and I don't have the stamina to be able to do so. I go a chair BECAUSE I don't have the stamina to stand, and I wanted to have a little left over when I got back home so that a grocery shopping trip didn't leave me in bed for the next 3 days.

The manual chair wasn't doing that so I switched to a powerchair and it's wonderful. Yeah, there are drawbacks (battery life, dead-end corridors, narrow doorways, manouverability, STEPS FOR NO REASON) but I can go to Tesco or the garden centre and buzz around for an hour or an hour and a half and come home and be tired but still able to sit upright.

12) How you manage a flare

Literally, by dropping to the floor. If I'm having a really symptomatic day, I'll either spend it in one place (my bed or the couch usually) or I'll make really short trips of a few steps at a time and then sit to rest before continuing.

Hate it.

13) The thing that has helped me the most since diagnosis is…

Diagnosis it self has helped with the imposter syndrome A LITTLE.

It's helped me understand what's going on with my body in relation to my other health issues more as well.

I can tell people I have pandysautonomia without uhmig and ahing and adding footnotes to it, and it's helped me when telling benefits that no, I can't stand actually.

14) Tips for cooking/cleaning with dysautonomia

I can't do either. Maybe pick up little bits of rubbish and put them in the little bin in my room, but I can't cook for myself and I can't do any large cleaning duties either.

For smaller tasks, I'd probably say, wait for a day where you've had a rest, where you know you can rest afterwards (for the next day or two), you have no big trips out or mentally draining tasks coming up, etc.

Break the task into small parts and see what you can do while sitting down, leave those for a bad day.

Do little and often, if you can.

Don't expect yourself to be able to complete a task all at once. Make small, achieveable goals.

But mostly, have a carer. IDK how I'd manage without my mum. I'm not going into a rant about the quality of life disabled people have at higher expense in order to just live, I'm not.

15) Managing dysautonomia at work/school

Lol, I can't work like this. I was fired from my job of 10 years for my migraines, and I developed pandysautonomia a few years later. I can barely spend time out of bed and downstairs most days, I physically can't work. What are you, the DWP?

16) Favourite dysautonomia-friendly hobbies/activities

WRITING!

Writing most of all.

Puzzle app on my phone

Plants are good, because they only need a little sporadic care, depending on what you get, and research is sometimes something I can do in a flare, depending on brain fog.

Keeping inverts. Tarantulas are good because they need infrequent feeding and really simple care, bioactive enclosures that don't need deep cleaning like a hamster cage or litter box might.

Inverts of all kinds, really, except the tiny ones that need tiny food because flies are a pain in the butt to work with.

Reptile keeping is also pretty easy, depending on the reptile and how you keep them. Surprisingly low maintainence, but it's also really easy to do in short bursts at infrequent intervals.

I like artistic pursuits, but they're hard in a flare up when the tremors get bad and I stop being able to lift my arms.

At the moment my favourite hobby is planning out my fish tanks, also pretty easy if you've got help for water changes, and really nice if you're having a migraine but can't sleep.

17) Your go-to comfort show/movie during a flare.

Adventure Time.

Generation Kill.

My Neighbours the Yamadas

There are others (Always Sunny, Over The Garden Wall, Inside Man (not the David Tennant one), Knightmare (old TV show on YouTube), Animals of Farthing Wood, Bob's Burgers, Fight Club, various anime) but those are the main three.

[micah-has-fallen]

October is Dysautonomia Awareness month and Vitassium has a 31 day challenge. And I want to participate but lack consistency so I’ll prob do them in clumps. Anyways here’s a screenshot of the list :)

See y’all in a few days!

(I’m probably doing Inktober too but that won’t be posted here lol, it’ll be the month of consistency challenges)

[beautiful-flutey]

So I saw this and went back and forth on if I was going to do it. I have decided I want to so to start off strong here are days 1-4.

1. Type of Dysautonomia you have: I have Postural Orthostatic Tachycardia Syndrome or POTs. This is a condition in which upon standing up from laying/sitting my heart rate jumps at least 30 beats per minute OR rises above 120 on prolonged standing.

2. Diagnosis Story: I feel like I had some of the “lesser” symptoms for awhile before this but wasn’t too worried about those. But one day my mom was doing my hair and I passed out. We went to the doctor, then to a Neurologist and a Cardiologist. The neurologist couldn’t figure it out with the tests done, the Cardiologist followed a sneaking suspicion did a tilt table and diagnosed me.

3. How long did it take to get diagnosed: I’m one of the luckier POTs people in that my diagnosis came within 1-3 years of the initial main symptom (passing out)

4. My most bothersome symptom: Probably my Presyncope. Because I have to sit or lay down and stop what I’m doing. And I never know if it’s the day that it will go further and become full syncope meaning I passed out. I’m fine if a pass out but I’m still terrified of it.

[Image Text: Dysautonomia Awareness

Month Challenge

Share your responses every day in October on your grid or story with the hashtag #VitassiumChallenge.

1. The type of dysautonomia you have

2. Your diagnosis story

3. How long it took you to get diagnosed

4. Your most bothersome symptom

5. Day in the life with dysautonomia

6. Your medication regimen

7. Your favorite products to manage your symptoms

8. Favorite way to hydrate

9. Your "saltcuterie" board/salty snacks

10. Favorite pair of compression socks

11. Your mobility aids

12. How you manage a flare

13. The thing that has helped me the most since diagnosis is...

14. Tips for cooking/cleaning with dysautonomia

15. Managing dysautonomia at work/school

16. Favorite dysautonomia-friendly hobbies/activities

17. Your go-to comfort show/ movie during a flare

18. Your support system

19. Best interaction with a healthcare provider

20. Worst interaction with a healthcare provider

21. One misconception I want to debunk is...

22. Dysautonomia co-morbidities

23. How you deal with heat intolerance

24. Your morning/nighttime routine with dysautonomia

25. What's in my bag, dysautonomia edition

26. Dysautonomia has taught me...

27. Advice for anyone who is newly diagnosed

28. What you wish others knew about having dysautonomia

29. What others can do to support the dysautonomia community

30. What Dysautonomia Awareness

Month means to you

31. Anything else you want to share?]

[rat-in-the-window]

October is Dysautonomia Awareness Month and I'm catching up on the prompt challenge.

Day 1: type of dysautonomia you have

_ I have POTS (postural orthostatic Tachycardia syndrome)

Day 2 and 3: diagnosis story and how long it took to get diagnosed.

I technically diagnosed myself, I've been having symptoms for over ten years (more than half of my life) and I've finally started researching it - finally when I was in nursing school I learnt about POTS and brought it up with my GP. Finally after three years, actively searching for a diagnosis I found a doctor who took me seriously and diagnosed me.

[potsiepumpkin]

Dysautonomia Awareness Month Challenge Day 4

What’s the most bothersome symptom?

It’s a tie between presyncope episodes, and frequent urination.

I experience both of these multiple times a day, and when my head doesn’t feel like it’s gonna pop off and fly away, due to lack of blood flow, I urgently have to go to the bathroom every 30 minutes at this point.

I have other serious and bothersome symptoms, but I chose the two that happen the most often multiple times throughout the day.

Here’s my heart rate just getting out of bed this morning. I’ve done nothing but stand up.

[bursting-at-the-seems]

I am 28 years old and I am 5 foot 10 and wear a size 20. I work with a personal trainer, I don't eat a lot, and I do my best to eat mindfully. I also have several recently diagnosed chronic conditions, Autoimmune, Dysautonomia, and endocrine, though the symptoms have been around most of my life. These are genetic conditions and they are not caused by my weight.

They believe if I lose weight they will go away.

Growing up my family always made comments about my weight as well as others. Most everyone in my family is over weight. I would run miles every day in high school and skip meals and still hear how i needed to lose more. I became the DSM5 definition of bulimic, made easier by other abuse going on in my life.

Now, I am a happy person and happy with myself. I'm not at the weight I want to be, but I don't discuss my weight with anyone outside of my doctor. If my family asks I tell them I am doing my best and discuss my medical condition challenges. They have offered gastric bypass and lap band surgery unsolicited. At a party someone brought up my weight to try and help me and in that I found out people have been discussing it behind my back out of concern. So I sent this text:

Hey family,

I have heard for quite some time that there have been conversations about my weight with others in the family, though not to me. Recently, this has come to my attention, again.

My doctor and I are both aware and in agreement that my weight is not our primary concern. This is due to my other medical conditions taking priority, especially as my weight did not cause these genetic conditions.

Despite this, I still consider it a priority and I've seen progress: weight loss, more muscle, less body fat, smaller measurements. This is because:

• I have met with professionals (nutritionists, doctors, therapist) to review my eating habits, avoid disordered eating, and how we can manage my conditions and side effects impact on my progress.

• I work with my personal trainer and we track my progress. Also, I'm adding more physical activity as I can.

While appreciate the love and concern from everyone, I do not want my weight to be a topic of conversation when I am not in the room. I hope you will all respect that. There is no need to respond to this message as I trust that any of my family, whom I truly love and who I know love me, will not be discussing my weight amongst each other ever again.

Thank you

In response I had two people get very upset. Saying that I should have just let it go. That people talk because they care. That's what a family is. That they are worried they will need to bury me. That my text was dismissive and uncaring. That it's not about my looks (for some) I told them these conversations are hurtful and as they don't know my weight it must be based of my looks. I was told when I really want a husband and kids I will lose weight, I won't be truly happy till l do lose weight. I told them, aside from this I am happy, I my weight isn't a requirement to happiness or marriage, and that their conversations make me feel ugly and want to go back to disordered eating. That it's hurtful when I am doing everything I can, they know I didn't eat a lot, and I'm fighting my body in other ways. It makes me feel like l'm failing. That at the very least I didn't need to hear about these conversations and I didn't need it discussed at family events.

Was my message so wrong? Does anyone else struggle with this? I love my family so much. I'm doing everything i can to keep loosing weight and it never seems enough, not just for my family but for my body. It just won't go down more.

[wanderlustt-101tn]

Dysautonomia;

Dysautonomia is a medical condition that affects the Autonomic Nervous System, which is responsible for regulating the automatic functions of the body, such as heart rate, blood pressure, digestion, kidney function, and more. People with dysautonomia may experience difficulty in controlling these systems, leading to symptoms like lightheadedness, fainting, abnormal heart rates, and unstable blood pressure. Dysautonomia can manifest in different forms.

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects an estimated 1 out of 100 teenagers, and including adult patients, it impacts a total of 1,00,000 to 3,000,000 Americans. POTS can cause various symptoms such as lightheadedness, fainting, rapid heartbeat, chest pains, shortness of breath, upset stomach, shaking, exercise intolerance, heat intolerance, temperature sensitivity, and more. Although POTS affects women more commonly, men can also get it. Despite appearing healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions such as COPD, congestive heart failure, and kidney disease.

Dysautonomia and POTS can be challenging to treat, and the effectiveness of treatment may vary depending on the expertise of your local medical staff. There are some home remedies that may help alleviate some of the symptoms and triggers associated with these conditions. However, it is important to understand that these remedies may not completely cure Dysautonomia or POTS, and their effectiveness may vary from person to person.

Pots is supposed to be more common than MS or Parkinson’s so why is that some have never heard of it ?

It can take an average of 4-7 years to get proper diagnosis. Because of being misdiagnosed or how most symptoms can be linked to other illnesses. Lots of tests is involved and it just becomes and exhausting time period of wanting answers and fighting to be seen or heard by others.

Pots affects everyone differently so not all pots patients will faint and just because pots is postural doesn’t mean lying down will make symptoms better.

Did you know there are 15 different types of Dysautonomia and all should be taken seriously! No matter how it affects the person it’s a serious illness and it should never be brushed off!! Not only does the illness bring a variety of symptoms but also impacts your life in ways you’d never imagined.

* some of the different types of Dysautonomia 🩵🩵

We shouldn’t have to look sick to get the proper care, treatment and support!

I’m finally comfortable sharing my pots journey and even though I’m nervous and scared about it I can’t wait because while I’m sharing my story I plan to raise awareness on not only pots but als as well. Another illness/disease that impacted my life. I plan to share how much my life has changed since I was diagnosed with pots. I also hope this reaches other chronic illnesses warriors and can show that you can still have a beautiful life even though we have a certain illness.

If you want to know more

intsagram: rebeljennigaines_

TikTok: jennigaines101

February 24th I’ll be participating in my first ever polar plunge and leading up to the big day I plan on sharing my pots journey and how this illness has affected my life! If you have any questions feel free to ask.

🩵🩵🫶🏻💪🏻 no one fights alone!

[amytabbycat]

I don’t usually make regular discussion posts that don’t have any fandom content attached, but apparently today is POTS Awareness Day. So I thought I might as well say something ^^

I have both POTS and EDS (fun fact, the two commonly occur together) and it certainly...makes things a bit more challenging, haha. For those that don’t know, POTS is a type of Dysautonomia that can cause a wide range of symptoms, but is generally the most known for a lot of dizziness, especially when changing positions. (e.g. standing up)

When I was younger, getting up could sometimes make me so dizzy I would go momentarily blind due to the swirling colors in my vision and occasionally I’d even lose control of my body and collapse. Thankfully that became a lot better after I was put on Propranolol, which I’ve been on ever since. But I still have lots of sucky symptoms and pain flares that have become increasingly frequent over the years.

I guess all that to say...the struggle is real lol. Having chronic illnesses/disabilities sucks and we have to try extra hard just to achieve the bare minimum a lot of the time. So here’s to all my homies juggling the everyday trials of life with the constant demand for attention from their own body. Like a frazzled parent attempting to pick up groceries while simultaneously trying to soothe the frantic screams of their chronically hysterical toddler. Keep up the great work, y’all! You’re doing great, even if you don’t feel like you are <3

[stormy333]

Hello October

Keep your eyes on the stars, and your feet on the ground.

Wrapping up September and opening October. There are a few things I'd like to cover in this post, so let's get into it!

#1 How did you all fancy the September blog challenge? Seriously all feedback is welcome. I want to hear your thoughts about it.

#2 What kind of challenges would you like to see in the future or just posts in general? How can I change things up to make it more interesting? Again constructive criticism is welcome I want to hear feedback from my viewers.

#3 October is Breast Cancer Awareness month, but it is also Dysautonomia Awareness month and there's loads more of awarneses I'm sure, but I have Dysautonomia so I low key go awareness crazy during that time.

#4 I will be doing another series but this time it will be a journaling prompt series about goals. 

I am looking forward to writing this, I hope you all look forward to reading it. I hope you are having a lovely day/night whenever you are reading it.

Until next time Loves💙

[potsiespoons]

[First Image is a blue and white background with the words "October is... Dysautonomia Awareness Month!" on it. A stick-figure girl says, "Make noise for turquoise!" Second image is a blue and white background with the words, "Introducing Potsie's Awareness Challenge!" on it, followed by a list: 1. How dysautonomia effects you; 2. What dysautonomia looks like; 3. Spoonie hack; 4. Your own POTS Problem; 5. The scariest thing about dysautonomia is...] HAPPY DYSAUTONOMIA AWARENESS MONTH EVERYBODY! This month, I'm hosting a special event over on Instagram, but you're all more than welcome to use the prompts to raise awareness here on Tumblr, too! (There's a special bonus if you participate over on Instagram, though... 😬) Also, I would encourage you all to share my comics this month especially--with your help, we can make lots of noise for turquoise! 🎉 Happy awareness raising!

[headpainmigraine]

Doing the Dysautonomia Awareness Challenge thing because I want to.

1. The type of dysautonomia you have

Pandysautonomia

2. Your diagnosis story

I noticed that I was getting lightheaded after standing for too long, and then I started feeling like I was going to faint. It was annoying but not awful, and I have my plate full with chronic migraine, so it got put on the back burner like every other issue I have that I should be dealing with but don't have the energy for.

And then I was so bad on the way to a family holiday in Malta that I needed a wheelchair to get through airport security. And then I had a fainting spell in the middle of a shop in Malta (luckily, sat down before I could fully pass out)

No idea what was going on, still having migraines, so ignored it. Brought it up with my neuro, 'hey, I've also been getting these dizzy spells?'

My current neuro, the fourth one I spoke to, is fantastic. They referred me over to every clinic imaginable because they suspected POTS, but also referred me to an ENT clinic, just in case.

ENT diagnosed me with vestibular migraine, and Persistent Postural-Perceptual Dizziness (PPPD) and gave me physio before discharging me.

Rheumatologist ruled out EDS and diagnosed fibro (the most tentative lacklustre diagnosis I've ever had)

The neurocardiologist really nailed it down though. I was supposed to have a TTT, but they did an active stand instead, and it wasn't clearly POTS, so that killed me.

THEN I had a battery of other tests (exercise test, ambulatory blood pressure, CT scan, heart scan, something else I can't remember) and my neurocardio confirmed pandysautonomia and POTS.

I challenged the diagnosis, because the active stand results had fucked with my head, and she reassured me that no, I definitely have ISSUES. The TTT is just one diagnostic tool, and the results of my other tests, plus my medical history, confirmed the diagnosis.

I also had a non-dipper profile for my BP, which is a little concerning, but I was having a 9-migraine at the time and didn't really sleep.

I'm still waiting for a gastro appointment, and to drill a little deeper on this pandysautonomia thing, but I feel like I had a pretty easy diagnosis journey comparatively (comparative to other people's journeys and my migraine journey)

My POTS is atypical because I have high blood pressure, not low - anyone else with the combination, hmu, I'd love to hear from you. It sucks having an atypical diagnosis in a 'common' illness.

3. How long it took you to get diagnosed

2-3 years, pretty quick

.

4. Your most bothersome symptom

The fucking TREMORS!

I can handle the fainting pretty well, I get the dizziness, it sucks that I can't get up and do things but I was dealing with that before the pandysautonomia got bad because of my constant refractive chronic migraines.

I went from being inactive to being inactive for more reasons, so there wasn't much difference re: impact in my life

but the TREMORS.

I can't handle them! I can't feed myself properly without weighted utensils, and even then I have to take frequent breaks while I eat because the constant shaking is tiring. It gets in the way of my typing, it makes it hard to do anything that needs even a modicum of steadiness, catching crickets for my tarantulas takes 10x longer and feels bad.

And that's just the ones in my hands! The ones in my legs make me feel like I'm wobbling about like an Ed, Edd and Eddy character. The constant shaking through my skeleton is so uncomfortable and irritating. I just sit there and shake and can't paint or draw or felt or anything. UGH.

end bitching.

[micah-has-fallen]

Dysautonomia post #1 (Days 1-3)

Day 1: The type of Dysautonomia you have

- I don’t yet know what specific type I have yet as I’m still in the official diagnosis phase. But my guess is something similar to POTS.

Day 2: Your diagnosis story

- I’m still in the diagnosis phase. I’ve been experiencing symptoms since age 11 and they’ve progressively just gotten worse and worse. They just ran a one week long heart monitor on me and I’m awaiting those results but itll definitely be a long process. (It took so long to seek help because my mom experiences similar things and really doesn’t want a diagnosis so she didn’t get why I should want one)

Day 3: How long it took you to get diagnosed

- As mentioned before it’s been almost six years fighting to even get to see the doctor. As of right now I’ve been in the official process for about six months. So who knows.

[the--social--anarchist]

Day ten and 14 of the Ehlers Danlos Awareness social media challenge are about adaptations and lifestyle hacks. ⁠ . ⁠ Personally, this topic is my FAVORITE topic. In fact, last year, before I even knew I had EDS (ironic, right?) I made 28 posts dedicated solely to "Spoonie Life Hacks." this is my favorite topic because I want to share with and learn from others how we can do our best to keep living our best lives, regardless of illness and limitation.⁠ .⁠ So, some of favorites? Aside from the obvious mobility aids, and tools intended for disability, I think staying organized and having a system for literally everything is super useful. Baskets are my friend.⁠ .⁠ Another really huge hack I've been using lately is to take my hydration multiplier stick to bed with a yeti mug of ice water and in the plastic spoon. That way I can mix it up and start chugging before I even get up. THIS REALLY REALLY HELPS!! It's specifically for dysautonomia purposes, but also I've found the cold fluids help stimulate my gut too!⁠ .⁠ This is a topic I plan on digging much deeper into (it's kinda the focus) on my blog, which is almosttt done! So stick around for that!⁠ .⁠ .⁠ .⁠ .⁠ .⁠ .⁠ #ehlersdanlossyndrome #eds #chronicillness #chronicpain #spoonie #ehlersdanlos #zebrastrong #invisibleillness #pots #dysautonomia #ehlersdanlosawareness #posturalorthostatictachycardiasyndrome #chronicallyill #chronicfatigue #heds #spoonielife #gastroparesis #fibromyalgia #butyoudontlooksick #potsie #potssyndrome #hypermobility #edsawareness #chronicillnesswarrior #chronicfatiguesyndrome #instablogger #blogging #blogger https://www.instagram.com/p/CAL6lvEIZZu/?igshid=xlrit2iie1xj

[rat-in-the-window]

Dysautonomia Awareness Month Challenge

Day 4: my most bothersome symptom

My most bothersome symptom would honestly be when I have to go from sitting to standing and my heart rate shoots and I have to take a moment to work out whether or not I have to take a seat or if I can keep going (high potential for passing out)

Day 5: day in the life with POTS

I have to change positions slowly (going from sitting to standing). However, this usually isn't an issue, considering I'm standing most of the time for work. I also try my best to stay as hydrated as possible - usually with electrolytes when I'm having a flare up. I also use a shower chair to reduce the risk of passing out in the shower.

Day 6: Medications

At the moment I only take propanalol to control my heart rate

Day 7 and 8: Favourite products to manage symptoms

- ice packs to reduce temperature

- fans/aircon to help with overheating

- hydralyte_electrolytes_ for hydration (this also counts as day 8 - favourite way to hydrate)

- I wear compression socks

- SALT!!! I carry salt packets with me everywhere

Day 9: my "saltcuterie" board

- i love miso soup and eat it quite often

- salt and vinegar chips

- pickels

- popcorn

- toast with hummus, smoked paprika, cayenne pepper and salt

[potsiepumpkin]

Dysautonomia Awareness Month Challenge Day 1

What type of Dysautonomia do you have?

I have Postural orthostatic tachycardia syndrome

Also called: POTS

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.

The symptoms of POTS include but are not limited to lightheadedness (occasionally with fainting), difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea.

[sjogrenssurvey-blog]

What You Need To Know

Sjogren’s is an autoimmune disease that can cause a wide variety of symptoms and result in a wide spectrum of severity. It has an overwhelming fondness for women, affecting eight times as many women as men. The average age of diagnosis for women is the early 50s; the average age for men is the late ‘50s, but Sjogren’s can occur at any age. The portion of the general population who have Sjogren’s syndrome is not known; studies vary widely in their findings, from a fraction of 1% to 7% of the elderly population. Better research on prevalence is needed, as is a standardized set of diagnostic criteria. It’s important to note that elderly folks have Sjogren’s 7-8 times as often as do people in their twenties. Sjogren’s can leave patients bedridden, but many patients are very active with only bothersome dryness of their eyes and/or mouth that doesn’t affect their lives significantly. 84% of Sjogren’s syndrome patients are women. One-third of us (including me) have small fiber nerve damage that causes complications in their autonomic body functions. Some I’ve spoken to have damage to organ valves, some even die of the resultant heart or kidney disease. The folks whom I’ve met who bother to talk to other patients online are often very ill, and have become desperate to learn more about their complicated conditions. Please don’t visit a support group and assume you’re going to be just as bad off as the folks online. We are home and online because we’re too sick to do much else. Many complain that their family doctors are ill-informed or that they aren’t giving them enough information. The recent influx of studies on Sjogren’s syndrome and our related conditions make keeping up with the current literature a must for the doctors who care for us. All About Moisture and the Lack of It People with the disorder experience Sjogren’s in various ways. Some are barely inconvenienced, some lives are altered drastically by the profound fatigue that is a major hallmark of the disease (we’ll be talking a lot about fatigue later on). Some of us are in constant pain due to small and large fiber nerve damage, others suffer sporadically with gland inflammation. Some Sjogren’s patients are merely bothered by dry eyes and take a prescription that keeps that issue in check. They may always be able to manage their illness with little difficulty. These people may live and die with barely a hitch in the course of their lives. Others must use artificial tears regularly throughout the day and suck on hard candies or chew gum to keep their mouths moist. There are prescription pharmaceutical remedies for both these issues when over-the-counter remedies are no longer enough. Women with Sjogren’s can experience vaginal dryness that makes it too painful to have male/female sexual intercourse. Pain during intercourse is often described. A lack of ability to perspire can interfere with body temperature regulation. Some of us produce so little saliva that we are unable to keep our teeth from rotting out of our heads no matter how diligently we brush, rinse and floss. Many middle-aged folks in my Facebook support groups already have dentures or tooth implants. Some of us lose their voices due to lack of mouth moisture to lubricate their throats. Singers with Sjogren’s syndrome often notice a raspiness due to laryngeal tissue damage from drying out. Some singers have to give up singing altogether. A few SS patients even completely lose their ability to speak due to throat tissue damage. Wide Spectrum of Central Nervous System Complications As of this post, some small studies suggest that about 30% of Sjogren’s patients have small-fiber nerve disease as found by skin punch biopsy. There is some speculation that small-fiber damage can progress to large-fiber nerve damage; a small, but significant percentage of patients show damage to myelinated large-fiber nerves. Small-fiber nerve damage is common in SS; this kind of nerve regulates the function of autonomic systems; damage to these nerves leads to a wide variety of dysfunction to body processes that occur without our conscious effort. This condition is called dysautonomia. We don’t have to think about each breath, or each heartbeat for them to keep going, or about pushing our blood or food through our digestive tracts or accessing oxygen or glucose or the uptake of trace minerals. It’s worth noting that recent studies show that up to 62% of fibromyalgia patients actually have small-fiber neuropathy to blame for their muscle pain and spasms. Dysautonomia is a health problem caused by our central nervous system’s inability to properly carry out our autonomic functions, which is everything our bodies do unconsciously, that is, without our consciously directed effort. Some autonomic functions include: 1.  Breathing 2.  Sleeping 3.  Digestion 4.  Heartbeat 5.  Hormone release 6.  Body temperature regulation 7.  Sweating 8.  Balance 9.  Sensory feedback 10. Storing memories - that memory loss is an autonomic function is speculative on my part. Emerging research has us closer than ever to a solid understanding of the memory storage process and the physical existence of engrams, the place where our long-term memories are thought to be. Many Sjogren’s patients report memory and cognitive issues (often called “brain fog” by patients). Many patients report losing jobs because of not being able to keep a train of thought or get enough done in a timely manner. Indeed, this was my chief complaint. I could have kept on with school, I could have withstood the muscle pain, dizziness and fatigue if only I was able to think like I used to. But, no, all of me was tired straight through, especially my brain. Even now, I try to do all intellectually challenging things in the morning when I am sharpest. Many Sjogren’s patients also have dysautonomia. We can’t always depend on a regular heartbeat, the ability to swallow smoothly, to be able to sleep well, to properly digest our food, or even to regulate our body temperature. Heatstroke is always a possibility in hot weather and can come on suddenly after even a short exposure to hot, humid conditions. Dysautonomia is related to small-fiber neuropathy, but it’s not clear exactly how.   Even taking a shower can be challenging if we try to shower in the warm temperatures we used before we got sick. One woman in my Facebook support group reports that her doctor advised that she not even go outside when the temperature (in Fahrenheit) and humidity together add up to 150 or more. I have heard over and over people say that just the effort of taking a shower tires them out so much that they have to go back to bed. I have been there many times! Talking to Your Doctor If you’re really lucky, you have a GP who is familiar with Sjogren’s syndrome. Unfortunately, there is so much new info coming into medicine, our family doctors may not familiar with recent research on the disease and may still think it’s a rare condition or a condition that only affects salivary and lacrimal glands. For this reason, we may need for our rheumatologists to behave as the doctor who coordinates our various medical specialty needs. Please encourage your rheumatologists and family doctors to become more familiar with this condition as it is still under-diagnosed. Ask whether they would appreciate being updated by you; offer to bring in new research papers. You may not be able to bring in the full studies due to paywalls, but you can bring in the abstract; it will give your doctor enough info to look up the full study if s/he has an account with his university library, Medline or Pub Med, etc. Spreading awareness is important: Early detection can lead to disease-modifying treatment. That is, there are drugs that can prevent further damage in Sjogren’s patients who tolerate it. There is research going on right now that may result in a vaccine for us in just a few years. I encourage everyone to join The Sjogren’s Foundation (www.Sjogrens.org) to receive ongoing updates on the state of our condition. Patients are best-served when they are being looked after by a good rheumatologist. A good rheumy will know that your Sjogren’s can cause widespread pain from nerve damage as well as deep fatigue. Check the rheumatology staff of your local teaching hospital if you’re having a hard time finding a knowledgable doctor. I’ve found good specialists by seeing who, locally, was publishing research on my condition. I realize that not everyone lives near teaching hospitals, but it can be worth the trek to the nearest big city if you’re only seeing your rheumatologist every 6 months or so, as most of us do once all the diagnostic interaction between you and your doctor’s office is done. Unless a physician has a particular interest in Sjogren’s syndrome, they may not even be aware that it is as widespread as it is now known to be. Recently thought to be a rare disease, Sjogren’s is now thought to occur in 3-5% of the population. That makes it one of the most common autoimmune diseases, only lagging after rheumatoid arthritis. Even less-understood is the complication of small-fiber neuropathy (SFN). Approximately 30% of Sjogren’s patients suffer with it. Patients report that even their neurologists aren’t up on the fact that SFN can cause pain and spasms as this is relatively new information that they didn’t get in medical school. Have a detailed conversation with your general physician about the many aspects of Sjogren’s syndrome and make sure that the two of you are a good fit. Small-fiber neuropathy is painful and can be debillitating; it can impede all physical function because of the wide-spread muscle and connective tissue pain it can cause. SFN is a factor in the disruption in autonomic dysfunction that can lead to serious complications. It’s worth knowing that up to 1/3 of us have SS-A and SS-B negative blood tests. Remember, absence of evidence is not evidence of absence. You are welcome to tell us about your journey to diagnosis or your dissatisfaction with not getting a prompt one. Was it hard for you to get a diagnosis? Please tell us your experience! Sources - I’ve done a whole lot of reading since my diagnosis in February of 2018, but the studies and articles I consulted for this particular blog, are listed below.   From Engrams to Pathologies of the Brain - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383718/ Small Fiber Neuropathy: Disease Classification Beyond Pain and Burning - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5912271/ Sex differences in Sjögren’s syndrome - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4630965/ Small-fiber neuropathy: Expanding the clinical pain universe - https://www.ncbi.nlm.nih.gov/pubmed/30569495 Primary Sjogren’s syndrome with central nervous system involvement: https://pdfs.semanticscholar.org/f2ee/a33c57f84283a4cd882294ad75fcc73e8232.pdf Sjogren’s syndrome disease info - https://www.hopkinsmedicine.org/health/conditions-and-diseases/sjogrens-syndrome Sjogren’s Center at Johns Hopkins - https://www.hopkinssjogrens.org/ Varied prevalence reported in large epidemiological survey - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4122257/ The Sjogren’s Syndrome Foundation - https://www.sjogrens.org #Sjogren's diagnosis#Sjogren's#Sjogren's symptoms#fatigue#deep fatigue#autoimmune#spoonie#chronic#profound fatigue#fatique#small fiber neuropathy#autonomic disorder#autonomic#dry eyes#dry mouth