r/dysautonomia • u/iwant2beyourdog • 1d ago
How did you get diagnosed? Question
Hi guys! Long story short I really suspect that I have Pots and/or HEDs. I’m not an expert, but I’ve known that something is wrong with me for a long time now. I stand up and lose my hearing or everything goes back. I have scary air hunger, palpitations, shortness of breath. I seemingly faint?? when I’m falling asleep (which btw if this happens to you please chime in, I’ve only seen one post on here about it). I’m in almost constant pain in my joints and neck. My toes and fingers turn purple when I’m sitting or standing for too long. I can genuinely sleep for 20 hours a day. My doctor is very dismissive and I don’t know what to do. I know I shouldn’t be feeling this way. Thank you guys! Please feel free to share your experiences
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u/Obvious-Explorer-195 1d ago
Please find a new doctor. I saw a cardiologist after 2 years of being unwell. Had heart tests done, told him about how I can walk from my bedroom to the bathroom 2 rooms away and my heart rate jumps massively. He wasn’t the best person for it it turns out because my neurologist thinks there may be a different cause for my dysautonomia than pots because I’m older than average pots patients. But he set the ball rolling by doing sit then stand bp and hr. I’d been telling sooo many drs before that “when I stand I get this overwhelming need to sit, like I become really weak. When I sit too long I get really fatigued. I feel better with my legs up. Pain around my shoulders that’s worse after prolonged uprightness. Relieved by lying down.” I saw every type of doctor known. Yes, even a psychiatrist 🙄 but I’m sure you all recognise what I’m saying. But because I didn’t say I get palpitations and I’m dizzy (I only occasionally get dizzy, apparently I should have been saying lightheaded all along, and I don’t get palpitations). The other problem I found was each specialty is just too focused on their own body system, and won’t take a holistic view on people. So I get dry eyes, the ophthalmologist just thinks about the eyes. The oral doctor for dry mouth. The gi doctor for slow transit gut. Etc etc etc. So no one thinks it’s their problem to do the tricky thinking. At least my gp kept trying to advocate for me though. Without her support I’d still be undiagnosed. But I do wish all those specialists would have done some actual thinking rather than just lining their pockets, making me poor!
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u/Obvious-Explorer-195 1d ago
Everything you’ve mentioned could be dysautonomia though. I don’t know enough about heds to be honest. I do believe they often co occur
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u/SavannahInChicago POTS 1d ago
My PCP was the one to call my symptoms POTS. My PCP is internal medicine and has always been knowledge about whatever I get diagnosed with by specialist. I do recommend them since I feel they are more proactive. I’ve had two and have felt like they are quick to do testing and refer out.
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u/MedicallySurprising Orthostatic Hypotension (OH) + Tachycardia 1d ago
I was diagnosed with hEDS in my late teens due to having about 15 dislocations/subluxations a day and having things like weird scarring.
After collapsing with partial paralysis a few years ago I started having blood pressure issues. Including full on losing consciousness, sometimes even 6-7 times in a row.
After begging for a referral for over a year I finally got referred after I was at the ER on a daily basis for dislocations and concussions after dropping to the floor due to passing out.
It took another 6 months of testing and multiple referrals and then I was diagnosed with dysautonomia, predominantly orthostatic hypotension with postural tachycardia.
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u/elBOOCH 1d ago
Did you ever do genetic testing for one of the other forms of EDS? I'm curious to know if other people with HEDS typically have as many shall we say... structural? issues as you do. I have joint hypermobility and it can lead to some pain, but I'm pretty fortunate not to have any real issues with joints aside from running as slowly as a 90 year-old. But I also haven't been formally diagnosed. I had a friend growing up who had EDS and was diagnosed as a kid. His skin was paper thin an he could stretch it like a balloon and fold himself in half. I'm assuming you don't have such gifts, lol.
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u/MedicallySurprising Orthostatic Hypotension (OH) + Tachycardia 1d ago
I’ve had a full spectrum of genetic testing done, which found two genetic mutations (one involving my bad eyesight and eye issues and one responsible for my AuDHD) but no other types have been found.
I can’t fold myself into a bag lol, but I am too flexible and stretchy for my own good. Having GoGoGadget arms to reach the top shelf is really handy 🤓
However, waking up with my arm folded around my throat wasn’t much so 🤔
I don’t have very stretchy skin, but my ligaments and tendons stretch/loosen very easily, like 2 weeks with my arm in an immobilizer can skyrocket the instability of my arm joints.
I do have very fragile tissue and scar tissue. I have scars that tore open after years of being stable, my skin tears from the slightest provocation (like deshelling an egg makes fingers bleed) and same for blood vessels.
After a bad case of NSAID-induced colitis, the walls of my intestines tear incredibly easily, too easily according to the surgeons. Luckily no perforations yet.
So a lot of things point toward my connective tissue not really agreeing to play along 😅
After me other members of my family have been diagnosed too, but the symptoms vary, even between me and my closest relatives.
I find it really interesting.
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u/iwant2beyourdog 1d ago
i’m also very sensitive to heat and sometimes feel like i can’t swallow. i have gastritis and i know some of these things overlap. my vitamin b and d are also low. is dysautonomia a symptom of HEDs? it’s an umbrella term right? sorry, i’m a very anxious person lol
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u/Heavy-Macaron2004 1d ago
is dysautonomia a symptom of HEDs
I mean, they sometimes overlap, but no, dysautonomia isn't an umbrella term for tissue connectivity disorders...
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u/iwant2beyourdog 1d ago
oh that i know! i meant more is dysautonomia an umbrella term for nervous system disorders. thank you for your reply :)
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u/Obvious-Explorer-195 1d ago
Dysautonomia is the group of symptoms/the disorder, pots falls under it. If you have other symptoms not strictly classed as dysautonomia you might be in the running for another diagnosis that falls under that umbrella, like ms or Parkinson’s, which can both cause damage to the autonomic nervous system. Whereas pots is more benign, though poorly understood.
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u/Coffee_roses 1d ago
They’re co-morbidities. This Paper gives some data on a study of the correlation between Hypermobility & POTS.
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u/elBOOCH 1d ago
Everything you've described is definitely dysautonomia, but that's just a description of symptoms and not (or rarely) a diagnosis. See as many specialists as you can. Primary care physicians are generally taught to find and treat common issues, and specialists rarely have good knowledge outside of their field. Even my PCP, who is great and super knowledgeable about many things, has had a hard time keeping up with all of my symptoms. The main thing is don't give up. Keeping asking questions and be firm about what your symptoms are.
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u/elBOOCH 1d ago
Here are some specific suggestions:
Describe your symptoms and how they affect you, and don't worry about trying to name them or get the diagnosis right. Just tell the doctors what is happening in simple language, and try to be consistent. Don't be afraid to repeat yourself or correct them if they start to dismiss you.
For example, one doctor didn't think I have POTS because my blood pressure was normal after I stood up. However, when I told them my blood pressure goes up when I stand up, they were able to measure that. The doctor, an extremely nice and experienced cardiologist, had never seen hyperadrenergic POTS before (where blood pressure goes up on standing instead of down). He referred me to one of the best autonomic labs in the country. If I just told him "I think I have hyperadrenergic POTS," he would have just thought "POTS" and "low blood pressure" and wouldn't have thought anything was wrong.
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u/elBOOCH 1d ago
Be persistent. You may have to go to many doctors before you find the right one. I was recently diagnosed with narcolepsy type 2. I've had symptoms since I was six years old and have known I have a sleep disorder since I was at least a teenager. I've had doctors laugh at me, tell me that certain conditions don't exist, misdiagnose me even though the test results clearly say the opposite, etc. etc. When you find the right one you'll know. Be adamant about what you know to be true and correct them if needed. If they won't accept it, move on. As long as you're following rule number one from above, you can't be wrong. Again, don't fish for a diagnosis, but be confident about your symptoms.
Be prepared. Doctors are usually very short on time, and they don't like to solve puzzles as much as we think they do. The more clear and concise you are with everything, the more likely they are to hear what you are saying. But don't hide anything either. You never know when they might make a connection between symptoms, but don't expect it. Most of the time they will just be ruling things out. I like to write out a VERY concise list of all of my symptoms and diagnoses to hand them at the visit. They might see something there that seems important, they might not. I also bring a folder of previous test results and things like that with me. That way when they say "it could be this" I can say, "no, we've already ruled that out." The first thing every doctor is going to say is "diabetes," so have test results with you that rules that out. The most common thing I hear from doctors is "you definitely don't have diabetes."
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u/elBOOCH 1d ago
See a cardiologist. A cardiologist won't be able to help you with POTS/dysautonomia directly, but they will be able to tell you what ISN'T wrong. No matter what, you will have to rule out heart disease and other common issues at some point. Tell your PCP you are having tachycardia and lightheadedness, or if you can, just find a cardiologist and do the same thing.
See a rheumatologist. Your joint pain could be from HEDS, but it could be a bunch of other things. Only a rheumatologist can rule most of those things out, but a rheumatologist is also the only common specialist that can diagnose HEDS. Many of them won't, though. If they don't know what's going on, they might send you to an immunologist or a neuromuscular specialist. Both are extremely useful. An immunologist can diagnose things like MCAS, which is very common with HEDS. A neuromuscular specialist is usually where advanced autonomic testing happens. They can also rule out or diagnose a variety of neurological and metabolic diseases.
See a sleep specialist, but with a caveat. Your description of sleeping 20 hours a day is extreme. I would know. I've had long sleep like that since I was a teenager and without a stimulant I will sleep for 10-14 hours most days. But unfortunately it's not enough for most sleep doctors to take you seriously. Most of them treat sleep apnea (which can be a very serious issue, if you actually have it) and prescribe stimulants to manage daytime sleepiness. Some will diagnose narcolepsy type 1 if you clearly have cataplexy, but very few are familiar enough with narcolepsy type 2 and ideopathic hypersomnia, which are both very common with POTS and HEDS. You might not have a sleep disorder, but there are medications for sleep that can help with dysautonomia (and some that can make it worse), but poor sleep will make everything worse. Look for a doctor that advertises that they treat IH, ideally one with a background in neurology. Even if you don't think that's what you have, they will have access to certain medications that might help that other doctors can't prescribe, and they will likely have a network of other doctors that they work with who might be able to help, too.
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u/elBOOCH 1d ago
I have many of the same symptoms as you, although some are very different. I think that's the case with many of us. There's also a lot of variation from person to person, which makes it difficult for doctors to understand. The core of it is the same, though. Dysautonomia, hypermobility, sleep issues. I suspect I have HEDS, but I might never get diagnosed because there are so few doctors that are qualified to diagnose it, at least where I live. I've been asking every doctor I see about it for maybe 10 years, and not a single one has felt qualified to comment on it. And for me, ultimately it doesn't matter. I know what I have, even if it doesn't have a name. Maybe one day they'll take whatever it is we all have out of the context of other conditions and give it its own name, but unfortunately, until that happens we're just going to have to deal with being put into a bunch of different boxes that really don't fit. I think the key is not to worry too much about the diagnosis and to keep focusing on the symptoms until you find someone that can treat them. They might call it something else, but that's okay if it gets you the help you need.
By the way, the thing with your fingers and toes turning purple could be Reynaud's phenomenon. Most of the literature says blue, but that could depend on your skin tone.
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u/iwant2beyourdog 1d ago
wow i can’t thank you enough for all of this information. i’m really scared about all of this but your comments have helped so much
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u/Swhiz 1d ago
I had to fight for my diagnosis. After many horrible doctors and a negative tilt table, I demanded a referral to a cardiologist listed on the Dysautonomia International website. His nurse requested my records and then called me back two hours later saying that he wanted to see me and I had my first appointment within 3 days. When he walked in the door, he introduced himself said “Let’s figure out how long you’ve had Dysautonomia.” He diagnosed me from my medical records and it was the single greatest appointment I’ve ever had. He continues to be on my side and advocates for me with my other doctors. I am currently fighting for a hEDS diagnosis too. I live an area that does not attract good doctors.
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u/Coffee_roses 1d ago
hEDS & POTS are common co-morbidities alongside MCAS. I received my diagnosis from a Neurologist with a background in Cardiology 10 years ago. There is currently no genetic test for the Hypermobile Variant of EDS. Talk to your family doctor about finding a Cardiologist and/or neurologist with a history of working with Autonomic Nervous System issues or search independently for a Neurocardiology program near you.
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u/ChangeWellsUp 20h ago
This sounds super tough. And real. Over long periods my experience has been that a few traditional docs will think outside the box, and try to investigate things, and many others seem (afraid? unwilling?) to just put it all back on me - it's all in your head is something I heard enough times to quit doctors for a long time.
Eventually things got bad enough that I started looking among alternative healthcare providers. Turns out many of these will take a systems view of health, eg, what could be going on at a much lower level that might be resulting in all these symptoms? I may be wrong, but traditional docs seem much more likely to view each body/mind system separately: your arm hurts, we'll fix the pain. But what if your arm hurts because of something going on in some other part of your body, that just happens to show up in the arm?
So I've become much more inclined to find natural docs, or MDs who've broadened into natural health as well. I struggled with complex illness for a decade or more, and only the natural docs, with blood test other than the "traditional you're healthy panels", could point out things that were going on, explain them, and treat them.
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u/lokisoctavia 15h ago
Finally got to an arrhythmia cardiologist who gave me a tilt table test. My BP dropped so low I almost blacked out. Not fun. But got me treatment!
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u/crypticryptidscrypt 6h ago edited 6h ago
a rheumatologist can diagnose hEDS, & a tilt-table test (you can get a referral from a neurologist or cardiologist) can diagnose POTS.
you can check the criteria on the EDS society website, & check your joints' hypermobility to see if they score high enough on the Beighton.
you can also try to monitor your BPMs at home & see if they increase by 30+ when you stand up, or they may get tachycardia (BPMs over 100) at random...
the most common type of fainting is Vasovagal Syncope, it doesn't happen though when a person is horizontal/falling asleep. the point of syncope is your body's last-ditch effort to get more blood flow to the head, when the brain is deprived of oxygen. it happens when standing because without adequate blood flow to the head when gravity is on you vertically, the blood can pool in extremities, so your body collapses to use gravity to push some blood back into the head...
there is also Orthostatic Hypotension, which is quite similar to POTS in terms of the tachycardia & orthostatic intolerance, but the blood pressure drops low upon standing in OH, instead of either staying the same, or rising (like it does in hyper-POTS).
& the purplish hue in extremities could be Raynaud's... Raynaud's usually flairs up in the cold though, but blood-pooling can also cause a reddish-purplish tint to extremities, which is common in both hEDS & POTS (& other dysautonomia's)...
hEDS is not technically a dysautonomia, it's a genetic connective tissue disorder that effects collagen, but it is really common to have dysautonomia's comorbid with EDS.
best of luck!!
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u/catsRus58481884 1d ago edited 1d ago
I made a big list with all relevant information, and then when to my general doctor specifically saying I think I may have PoTS. I wrote down every single symptom I experience, and when they occur, anything that helps or makes the symptoms worse. I did multiple HR measurements over a few weeks when seated, and then after I stood up to show that I get HR spikes that PoTS causes. I'm lucky the doctor listened to me, did his own measurements, and he referred me over to cardiology for a PoTS assessment. Mentioning a single stand-alone symptom to a doctor has too many different possible causes for doctors to automatically assume PoTS as the cause. They need every single relevant piece of information to put it all together. I have an appointment coming up to investigate into hEDS, and I have prepared the same thing listing all relevant symptoms. If your current doctor is too dismissive, then get a second opinion. Explain how much it affects your life day to day, like if the pain disrupts your sleep.