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walking-loather · 1 year ago

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I said i was going to answer all these questions at one point sooooo.... This is that lol

1: The type of dysautonomia I have is Hyperandrogenic Postural Orthostatic Tachycardia Syndrome (or h-POTS) for short

2. My diagnosis story is a loooooong one. The first time I became aware of any POTS related symptoms was when I was in hospital for an overdose on medication that affected my heart. (It was two medicines that when taken together in an OD disrupt the heart's electrical function). I was 17 and suddenly HYPER aware of my heartrate and was paranoid about the OD having caused heart damage. I felt tachycardic and tried many times to find answers for what was happening. They did several ECG's; all normal (as is expected with POTS), but got no further answers. It was dismissed as anxiety.

Fast forward a few years and I learn about POTS. I think it's likely I have it, so i start keeping detailed logs of my heart-rate (HR) before and after standing. Eventually i work up the nerve to ask a GP about it through my uni. It was one of the worst doctor's appointments ive ever had. He dismissed all my symptoms as low blood sugar and deconditioning. Describes my HR and pulse as weak despite not examining me. When he finally does take my pulse he is surprised by how strong it is. This ultimately does not lead anywhere. I do however purchase a blood-glucose monitoring kit and start recording my HR and blood sugar and find no correlation.

One day I am trying to donate blood plamsa and they say that i am tachycardic and they cant take my blood until i am cleared by a cardiologist. This gets the ball rolling, a bit, but its still at least a year before I even start being investigated for POTS.

With the aid of a new (better) GP i am refered to the only cardiologist in my city who has a tilt table. I first go through a battery of tests (multiple ECG's, a Halter Monitor, and an Echocardiogram (I get to skip the cardiac stress test because i am in a wheelchair) to rule out structural or electrical conditions of the heart.

Finally the day of the tilt table arrives. I do EVERYTHING to prepare my POTS to be as symptomatic as possible. I lie on the table. They go through the process. My HR stays steady. I am devastated. But the cardiac nurse says, "we'll just get you to lie down and then stand up again quickly, because it doesn't always show up on the test." I lie down again, and my fucking nerves are shattered. I can't see my HR but I will later learn that it is an even 70. I stand up and my HR immediately shoots to over 120. I feel the blood pressure cuff inflate and I am just praying that my blood pressure stays steady. I will later learn that it increased significantly.

I have to wait a week for a follow up with my cardiologist and i am so stressed for that appointment. At this point I have been waiting for just about 4 years and I have spent over $3000 in medical bills (over 80% of which i will thankfully get back due to medicare. I love you medicare) to get an answer. I sit down in the chair in his office and wait for him to come in. He records the appointment for his secretary to later type up.

"I am seeing [name redacted] a 21 year old woman referred to me with a history of tachycardia in order to investigate—", his words just fade into the background. They become secondary and I am just waiting for the penny to drop, for him to say nothing is wrong; for this to have been a useless exercise, "multiple 12-lead ECG's showed no abnormality, Halter Monitor indicated multiple incidences of tachycardia, as was anticipated, Electrocardiogram: normal, tilt-table test showed resting HR at 70bpm; blood pressure 108/70, standing HR at 123bpm; blood pressure 128/90, diagnosis of POTS requires HR increase of >30bpm upon postural change with no drop in blood pressure, result positive."

Result. Positive.

With two words I had been vindicated. I. Was. Right.

The rest of the consultation discussed that I have the Hyperandrogenic subtype of POTS, and went over a treatment plan. As of the current day I have been waiting over a year for a referral to THE ONLY POTS specialist in my country so he can assess my case and step up care. My current symptoms cannot be managed by diet, fluid intake, heart medication, or compressive garments for various reasons, and so now it is time to pursue options like saline infusion therapy. (Whew that was a long one)

3. As mentioned in the answer above, the time it took to get my diagnosis was around 4 years. (I first noticed symptoms in June of 2018, and finally got diagnosed in the first half of 2022.

4. My most bothersome symptom is a hard one to pick. What I experience daily is dizzyness and pre-syncope but it is not always problematic. Fatigue is definitely one that I find most disabling, as I feel exhausted to the point of not being able to complete ADL's (activities of daily living) such as bathing, hygiene tasks, dressing myself (I might be able to dress myself in the morning, but then sleep in those clothes for example. Sometimes i require complete assistance, but not always. Currently, I have been wearing the same clothes for almost 3 days), feeding myself (I can eat, but struggle to prepare food and rely on others), among others.

The most debilitating symptom would have to be heat intolerance. I had a day recently where I had to keep my head between my knees while out because I was pre-sycopal while sitting. I was so nauseated I had to use all of my energy not to throw up. When we finally got home, I couldn't even lift my head up from the pillow without becoming dizzy. When my POTS is that bad I become bedridden.

Another problematic symptom would be blood-pressure induced migraines, but I also have two other conditions that cause migraines, so its hard to assign a root cause to them, and it feels disingenuous to label that as solely a POTS symptom. They do however leave me bedridden in complete darkness and silence for three days. So. Not great for functionality.

5. A day in the life with dysautonomia: I wake up and generally lay around for a while. I have to be careful with standing up, but usually i forget to be. The first time getting up in the morning is usually the worst. On my way to the bathroom I will have an episode of pre-syncope, but thankfully I usually sit down pretty quickly. I've only had two syncopal episodes with POTS, but THOUSANDS of pre-syncopal ones, so I kind of just power through them. On a bad day, I would struggle to go about my ADL's. I typically would not try to negotiate the stairs and would be reliant on others for help. On a good day I might have an errand that I have to run, (like a medical appointment, a social engagement, or something like going to the pharmacy). I tend to be a home body and dont usually go out for extended periods of time by myself. I will then do my ONE activity for the day and come home exhausted. On a bad day I might request my anti-POTS miracle meal which I call "ocean brine". (A tablespoon of miso paste in boiled water, with plenty of added salt). This usually has me feeling better. On a typical day though, I usally dont shower, and I dont brush my teeth. I know. Believe me i find it just as gross as you do. I have a capital D Disability which makes it very hard to take care of myself, and though my partner does provide care to me, I also dont want to burden her with those sorts of things. The house I'm in also doesn't have a bath, so I have to take showers which I find much more energy intensive and activating in regards to my POTS. When I had a feeding tube I was able to run fluids over a 24-hour period to meet my hydration goals, but without it I haven't been able to do so, so I have been more symptomatic. Throughout the day my heart races and I get dizzy and pre-syncopal more times than I can count. Sitting upright is tiring, so I spend a lot of my time laying down in bed. I am content, but I know my quality of life could be dramatically improved if my POTS was under control.

6: my medication regimen is as follows:

Morning: 100mg tapentadol SR (for pain management), 10mg baclofen (to relax muscles), 150mg venelefaxine (to treat depression, but also to assist in pain management. Its my wonder drug)

Evening: 50mg tapentadol SR (for pain management), 10mg baclofen (to relax muscles), 10mg amitriptyline (to treat nerve pain)

My current dose of amitriptyline is going to be stepped up to better treat pain. Prior to taking it I was on 10mg of haloperidol in the mornings to help prevent nausea, but it would have interacted and I prefer nausea over pain. I have also taken Ivabradine in the past, but it did not cause significant symptoms alleviation, and I couldn't justify the cost of it (between $50-$70 per month) with all of my other medical expenses. I cannot take beta-blockers due to the medication I take to treat asthma. I also used to take salt tablets, but I couldn't get the dosage right with my highly variable fluid intake and caused myself some intense hypertension.

7: my favourite product to manage my symptoms would have to be: good old fashioned salt. I love my "ocean brine" as well on a bad day. On a really bad day I might endure the sensory hell that is compression garments. But even if it wasn't a sensory nightmare I would find compression garments problematic as they are costly and require a level of daily upkeep I am unable to complete. The best thing I've ever had to help manage my POTS was intravenous saline, but that was only while in hospital. It was nice not to get dizzy when standing up, though!

8. Favourite way to hydrate? Well, my most preferred way was running fluids through my NJ tube. I have comorbid gastrointestinal dysmotility, and so fluid intake is challenging to manage. As for what I hydrate with daily... I try to get my fluids by any means except just plain water. That usually takes the form of an energy drink which is definitely hindering more than helping 😅, and through my food. (Beloved ocean brine). I really struggle to drink a litre of fluids a day, and so im pretty much chronically dehydrated, and what I do drink I prefer to taste nice, especially since it makes me nauseated.

9: my favourite salty snacks include: ocean brine, seaweed, thinly cut chips, salted crackers, (oysters if I'm at the coast. I load those bad boys up), biltong (a dried meat snack similar to jerky but vastly superior in every single way posible), droewors (like bilton but its made from boerwors, an afrikaans sausage), and even just good old handfuls of salt.

10: I do not have a favourite pair of compression socks. I hate them. I cannot tolerate even mild compression, let alone the high compression needed for POTS. I also can't tolerate the recommended thigh-high socks or waist-high stockings. It. Is. Sensory. Hell. I get so overstimulated incredibly quickly, and I cannot complete with the daily washing required.

11. My mobility aids are as follows: two different manual wheelchairs used whenever I want to walk further than, say, 50m. One is a travel chair and is better for when someone is pushing me, but it is uncomfortable and difficult to use, but it was my first chair and I'm very attached. The other is a hand-me-down custom active wheelchair that mostly fits, it has dramatically improved my quality of life but she is at the end of her life and busy falling apart. A cane used for short distances. And a pair of forearm crutches for when a cane isn't enough. I would like to get a rollator to try and push myself to improve my walking distance, but the one I want is expensive. One day though. I am currently in the process of getting MY OWN custom chair. Very exciting!!

12: I manage a flare with bed-rest, cooling (with a fan, or sometimes spraying myself with water), and lots of salt. I am tempted to get another refill of Ivabradine to take when it's really, really bad and I just need to take the edge off. I also have medication i can take if i get a migraine. I also try to activate my parasympathetic nervous system as much as possible with deep breathing, or submerging my face in cold water, (or cold showers if i have enough energy to do so).

13: the thing that has helped me the most since diagnosis, has been my diagnosis. I finally have an explanation for what is going on with me instead of just thinking I was lazy. My POTS assisted me with getting on disability as though it may not be my most disabling condition, it does DEEPLY affect my day to day and quality of life. There is power in a diagnosis. You can get help. Without one you are stuck without any explanations or resources.

14: tips for cooking or cleaning with dysautonomia: Do. It. Sitting. Down. I shower sitting down. Life changing. Also: Last night was one of the rare occasions I was able to cook. I did the entire thing sitting down. I iron sitting down (except for the one time i let my pride dictate what i should do and i knocked myself out for 5 days with a flare). I fold laundry sitting down. When I do larger cleaning tasks like vacuuming, I wait for a good day and do one room at a time with sitting breaks. I do a task like unpacking the dishwasher while i wait for the kettle to boil and i sit down if i have to, or for things like putting away the cutlery. But, i will also be getting cleaning services soon as part of my disability benefits which will help HUGELY. I wont have to burn up all my energy trying to tackle one cleaning task in a day. Do it sitting down, and delegate (if you are able to).

15: when it comes to managing dysautonomia in work or at school, I am at a loss. I am unable to attend school or work with my current level of disability. If I go back to studying I will have to read up on effective strategies and talk extensively with my school's disability liaison for help.

16. My favourite dysautonomia-friendly hobby is crochet. But, I have to be careful because due to an underlying connective tissue disorder I have hypermobility in both elbows, which lead to ulnar nerve entrapment and inflammation. I also got both tennis AND golfer's elbow. I had one ulnar nerve transposition, and I'm saving up for the other. My other hobby is doing puzzles. I sit on the floor with my puzzle and just slowly chip away at it. Songwriting and playing the guitar is another one I enjoy. It allows me to express my feelings and get out what's bothering me.

17: go to comfort-show movie during a flare? I dont really watch tv or enjoy watching movies anymore. When I did, it was Ice Age. Now, id rather put on a video essay, or something like that. If i feel like TV, its Grey's Anatomy, or Clone Wars. Maybe if I feel up to it I might watch the tennis or some other sport.

18: my support system consists of my partner and our girlfriend, my mother, and my medical care team. I also have friends I can lean on and spend time with. Recently, communication with my family in South Africa has opened up, so I can talk to them too now.

19: best interaction with a healthcare provider? Id say my GP and I have a really good raport. I can trust her, and she listens to me and believes me. My psychologist is also an amazing woman who has helped me more than I can ever express. My physio is wonderful and has motivated me to work harder and fight to take back what levels of functionality I can. I also used to see an osteopath for massage and dry needling for pain, and he was wonderful and attentive. The dry needling really helps relieve muscle tension and pain during a flare. He would push a needle into my piriformis and i would feel a JOLT as the muscle relaxed around my nerve and relieved sciatica. The radiologist who does my ulnar nerve cortisone injections is EXCELLENT and has NEVER caused me any pain or discomfort during an injection. I have met wonderful nurses who held my hand as I cried and helped calm me down during some of the most traumatic times in my life. Its hard to just pick one positive.

20: my worst interaction with a healthcare provider is a dead tie between two. One incident occurred when I was 13 and less than two weeks out from a spinal fusion. My wound site got infected and the emergency room nurse who treated me thought i was exaggerating my pain and malingering. When the time came to change my dressing, she reapplied the bandage by slapping it down. Now, as you can imagine, having someone SLAP your FRESH spinal fusion surgery incision MULTIPLE times was incredibly painful. Just shocking treatment, honestly. Who does that to a kid?

The second incident occurred after a suicide attempt. The nurse screamed at me and cussed me out for what I had done. He totally lost it at me. I have hazy memories of him belligerently yelling at me, and having to be escorted away by a colleague. There are countless other incidents of health professionals deliberately causing me pain, or berating/insulting/demeaning/dismissing me, but those two are the ones that stand out.

21: one misconception i want to debunk is that everyone with POTS faints all the time. Only about 13% of people with POTS experience regular syncopal episodes. The vast majority of us do not faint. If you faint when standing up, chances are you have some other kind of dysautonomia. The likelihood is that it is not POTS. However, that does not mean that people who regularly faint don't have POTS, as there are MANY who do. But its not the majority. I, for example, have only had 2 POTS related syncopal episodes, and usually only experience pre-syncope. That means, for me, that I basically have every other symptom that comes with fainting, but I don't lose consciousness. I also dont fall over, but I have on occasion lost my balance and hit the ground. But I am still conscious, even though my vision completely blacks out and I lose my equilibrium.

22. I have comorbidities with my dysautonomia. I have the classic trio of Hypermobility (HSD, but possibly EDS (pursuing diagnosis)), h-POTS, and gastrointestinal dysmotility (oesophageal spastic motility disorder and gastroparesis). I have also had strange allergy flares where I spontaneously break out in hives, become short of breath, and generally just feel like pure absolute shit). Comorbid with my hypermobility/connective tissue disorder I have scoliosis which was surgically corrected, and resulted in chronic pain and nerve damage. I also have asthma. In addition to all of this I have Functional Neurological Disorder. I am also neurodiverse in that I have Dissociative Identity Disorder (like, actually DID, not tiktok or discord DID... Like the actual real thing that has actually really been diagnosed by a psychiatric professional), as well as dyscalculia, and it is also likely that I have other neurodevelopmental disorders which I am pursuing diagnosis for. Basically: I am the culmination of generations of genetic misfortune... Yay...

23: how do i deal with heat intolerance. Answer: I don't. I'd LOVE to figure it out 😅

24: my morning and nighttime routine with dysautonomia mainly consists of: take pills; lay down.

25: what's in my bag? I don't carry a bag, i simply keep everything on my lap. All i take with me are my phone and wallet (which i dont even have anymore because my wallet was STOLEN, but thats another story). I really should carry a bag with me, but I dont.

26: dysautonomia has taught me my limits more than anything else. It has also taught me how to navigate the medical industry, and to trust my gut. I know when something is wrong with my body, and my instincts are usually right (apart from the few times where they haven't been 😅). The medical process for me has largely been researching my symptoms, and bringing them up to doctors by suggesting possible causes. That has led to testing, and sometimes I've been wrong, but usually I am right. That doesn't mean I doctor shop until I get an answer I want to hear, though. If i dont fit the bill for a condition, then I accept that answer. But when I have advocated for myself and gotten tested for the conditions I have, I have felt very vindicated when I have been proven right. There's nothing quite like the feeling when you've been told that you are just crazy or making things up, and you finally get an answer saying that you were right to be concerned about your health all along. That doesn't mean I'm happy that I'm disabled, but it does mean that I have answers for WHY I'm disabled and I'm able to get the treatment I need to improve my quality of life.

27: advice for anyone who is newly diagnosed? Get a functional capacity assessment (FCA). You might qualify for disability, especially if you have comorbidities. In Australia, a disability is defined as a significant functional impairment. You may think you're pushing through things alright, but its not until someone assesses you and points out how you are significantly impaired when compared to a healthy person that you realise all the ways a condition has taken over your life. A FCA also allows you to pinpoint areas in your life where you need help, and get help that is targeted toward them. Also, if you can afford it, work with an Occupational Therapist as well to find strategies or tools that you can use to help you function day to day. But the really good thing about a FCA is that it is EVIDENCE. It is medical evidence that you can use to advocate for yourself in order to get the treatment you need.

28: if its one thing i wish others knew about dysautonomia is just how debilitating it can be. In my particular case, my POTS fatigue merges with my chronic pain fatigue to create a wave of exhaustion that I struggle to articulate. Its not that I'm lazy. I want to do things with my life. If i could, I would have a full-time job, I'd study, and I'd have a rich social life. As it stands, I am unable to do that. I can't even prepare food for myself most days for christ's sake. I wouldnt choose to live like this. I dont want to live like this. If i could make someone live in my body for a day, they'd understand. Hell, maybe even I would understand how bad it really is compared to being healthy and able-bodied. I miss going on walks. I miss running. I miss being able to stand for hours on end. I miss showering every day. I miss being able to keep my space clean and tidy. I miss being able to DO things. I wouldn't live like this if I had a choice in the matter.

29: what others can do to support those with dysautonomia? Listen. Believe us. That's all.

30: what does dysautonomia awareness month mean to me? Well, it means more people just knowing about these conditions. In a post-covid world, so many people have POTS but have no idea they have it. I didn't know I had it until I chanced by a mention of it online. Having knowledge changes lives

31: Anything else to say? Nope. I think that's about it.

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)

#that was a long mess of a lot of shit #if you read all of this... youre a real one.#POTS

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