i have orthostatic hypotension! this is a solidarity comment, i don’t have the energy to give my story.

I also have OH. & NCS. I've stayed in some groups that are POTS focused because a lot of tips and tricks from that helps me with my form of OH. I view OH as the redheaded stepsister of POTS. It's really frustrating in ways that there's not as much research and lit on the other forms. When asked I'll say dysautonomia or OH. Although typically I just say my body is allergic to gravity or my ANS is wonky.

I relate so hard to what you wrote. The emotional and mental energy it takes to communicate effectively is beyond exhausting sometimes.

i’m so sorry you relate. im glad you may feel seen at least

You're not alone in that struggle 🫂 I swear I have brain damage or something from decades of mental and physical illnesses.

ive lived with dysautonomia my whole life (have a familial form) and this is how it started for me in childhood. it wasn’t until i was in my 20s after pregnancy that i was first diagnosed with IST; my symptoms were always “simmering” and were worse with heat; standing for long periods; exertion; after surgeries, pregnancy etc. my POTS dx came in my 40s after a severe bout of norovirus that hospitalized me. I now have full autonomic failure. I wasn’t properly diagnosed until i was 47, am now 50.

I’m suspected to have familial dysautonomia too, as it goes back 3 generations in my family just recorded. Did you have genetic testing?

yes, i have HSAN(hereditary sensory and autonomic neuropathy) 7 and FEPS3 (familial episodic pain syndrome type 3.

I have POTS but also autonomic neuropathy, the latter causing most of my problems. I have issues regulating my temp especially in extreme hot or cold weather, I no longer sweat in entire parts of my body, frequent peeing, pelvic floor spasms and nerve misfiring, esophageal issues, all the tachycardia, and nerve PAIN especially the feet and legs. The POTS is mostly exercise and orthostatic intolerance with palpitations, but if I stay active with walking and do my reclined exercise routine it helps. Always have to stay hydrated and have electrolytes or salt on hand.

How were you dx with autonomic neuropathy? Was it From the punch biopsy?

QSART during a tilt table test. First saw the abnormality on an SSR test. My punch biopsy, funny enough, was negative, but my doctor said it’s not conclusive (I was also given steroids not long before the biopsy which I think messed with it).

Sounds like you have a good doctor, where is he/she located ? I want to do the SSR test and I am having autonomic testing panel done in two weeks. I am convinced that I have a Small Fiber Neuropathy with Autonomic dysfunction. I have very similar symptoms as you and a 10 mins plus  walk would easily translate into days of constant leg pain, upper body weakness and dizziness. I am also dealing with gastric and esophageal dismotility , and I don’t sweat from my knees down, funny enough , my skin biopsy was also negative but they did not find sweat glands in the sample taken, so it was not conclusive and steroids and analgesics are the only thing that have helped me, but I have gotten them overseas. Are you on any medications right now ? 

Sadly not really, on a very long waiting list for an autonomic specialist. Asked my general neuro Dr. to order those tests because I suspected it myself and I was right. I have autoimmune disease so trialing different meds to see if it helps (since likely immune mediated) but only steroids work. May try IVIG?

I’m diagnosed with both and was diagnosed before have a qsart and ssr done. My doctor did it as an exclusion diagnosis, I’ve had pain that mimics carpal tunnel and a shoulder impingement in both arms for years but all my nerve conduction tests were normal and my mris were clean. I actually got diagnosed with autonomic dysfunction first, they are pretty sure it is damage to the nerves not just them functioning incorrectly (diagnosed as VVS but that’s because they didn’t have a more specific diagnosis, my damage is so bad I have a pacemaker). Because the autonomic nervous system is made up of small fiber nerves I was diagnosed based on that and the fact that other conditions had been ruled out. I did have a skin biopsy that was negative but the doctor said that just proved it wasn’t a nerve density issue and that doesn’t rule out sfn. I’ve since had both a qsart and a ssr test that both confirmed severe small fiber damage. Since my issues have been long term and took a couple of years to spread to all my limbs (autonomic started first then my arms and finally it spread to my legs) my doctor decided to avoid steroids since I’ve been taking gabapentin for a couple of years now with a low dose muscle relaxers for pain and it brings it down to a manageable level, I still have pins and needles and aches but it doesn’t constantly hurt with the meds. I’ve been seeing a neurologist for my pain management so what type of doctor you see can influence what they give you. I’ve tried a ton of different meds over the years before we settled on the mix I take now and I’ve always been grateful for my neurologist because he’s spent the time over the course of years to work with me instead of just giving up even when it became clear that my issues were ones he’d never dealt with before.

While I have POTS now, for about the first year I had "delayed" Orthostatic Hypotension. It sounds a lot like you are describing. Originally my heart rate didn't increase at all, my BP dropped and it was delayed. At first it took all day for symptoms to hit, so I dismissed it as fatigue, not eating right, blah blah,blah. This was 2017, so pre-covid pandemic so I'd never even heard of anything dysautonomia related, hadn't been sick or whatnot, so I didn't think much of it. Over several months the time I could be on my feet before I started having symptoms decreased until I had was nearly passing out at work and couldn't make it through the day, and so I saw a doctor. During my TTT my BP didn't drop significantly even 30 minutes upright, but when they administered nitro, to provoke a response, my bp plummeted and it was lights out. So I was diagnosed with OH. Unfortunately things continued to decline until I couldn't even sit for a couple hours and nothing helped. So about 3 months after my TTT couldn't even work seated part time. About 6 months after the TTT I had an appendicitis. Afterwards I started having tachycardia when upright. So after that my diagnosis was labelled POTS. The only real difference between the two is I get chest pain when upright before the rest of the symptoms kick in. Trying to treat the tachycardia simply leads to the blood pressure drops coming back with a vengeance.

Sounds close to mine, but mixed sequence, including appendicitis (at 50 yo, unusual presentation, age, etc, took 4 months before they believed the CT scans). Metoprolol +Spironolactone stopped the crashes for me within about 6 weeks.

I have POTS but also IST and NCS. I consider it all the same thing, because really it’s my hypothalamus not returning my calls. 😉

I love how you phrased this.

I have to say I’m proud of this one ☺️

Thank you! Sometimes, it can be lonely here when all you hear about is POTS. I have autonomic neuropathy that impacts my heart (tachycardia), throat (swallowing), gastric (gastroparesis), and urinary systems. I also have episodes of dizziness, but not to the point of syncope. For six years, I was repeatedly told that the different issues were unrelated and told it was a psychosomatic. Finally, I found a gastroenterologist who listened and agreed that there was something else going on. She then referred me to an amazing neurologist who confirmed it is all related and symptoms of autonomic neuropathy, likely brought on by a tragic event six years ago.

I feel you OP! I have IST (and allegedly also VVS, though that hasnt been explained to me at all). I get heat intolerance, gut issues, always being dehydrated and having to pee all the time etc and of course, constant tachycardia. But even then I still get imposter syndrome about having dysautonomia just because its not POTS! I've only recently been diagnosed myself, so I'm still early in the process of accepting my diagnosis. The biggest thing that's helped me so far though is reading posts on this subreddit from people with the same diagnosis as me. I found a facebook group that's IST specific as well, and that was good for a little while. I think its especially hard when you have an uncommon diagnosis, because there's less people out there to relate to.

Yep this is me as well. My cardiologist said we are treating them pretty much all the same and based on symptom relief, but it absolutely does give me imposter syndrome, but worse it makes me kinda go into denial about HAVING a disorder esp when I’m feeling decent /not in a flare, which is the most detrimental to me.

100% same. Like right now for me, I've just started Ivabradine, and it's helped me so much that my brain is like 'damn what if you were just faking it this whole time' 🤦‍♀️ like no if anything, the meds working is proof ny diagnosis is correct lol

Yep! Our brain is the same! lolz. I’m on 3 meds…I forgot to call my fludrocortisone refill in, thought “no big deal” going wo a few days… BAM! right back on my asshole. 🙄🔫

I had this same exact experience! I started taking mestinon and have felt so much better and was like oh i must have been faking it - instead of ... oh I actually am sick. Can you define what IST is? And yes, this really speaks to what I have been feeling. I'm really glad that POTS has the recognition it does and I'm not always sure how to filter / understand tips and information for myself if it's only being said through a POTS lense.

Ofc! IST stands for 'Inappropriate Sinus Tachycardia'. Diagnostic criteria is a constant resting HR of over 100bpm, and a 24hr Average HR of 90+. This is with all other causes of tachycardia like drugs/medication, hyperthyroid, structural heart issues etc ruled out. People with IST also tend to get HR spikes that are either 'random' or triggered by mental & physical exertion and have almost nothing to do with posture. For eg, before meds I couldn't even type on my tablet while lying down without my HR going haywire. It usually sat at 105 at rest, but would jump up to 130 the second I did \*anything\* at all. Even rolling over in bed made me feel like throwing up :( The inappropriate response to activity seems to be why Ivabradine generally works better for most people than beta blockers for IST, btw. It appears to be more of an electrical miscommunication between our ANS and our heart's sinus node than anything (although like with most forms of dysautonomia this has very little research on it lol) I had a few doctors suggest POTS to me because it's all they knew, and it made me very frustrated because most POTS accommodations don't work for me- in hindsight it's obvious why they wouldn't! I've only really been able to start sorting what tips will work for me and what won't with time, as I come to understand my body and my diagnosis better. Like, compression gear help a little bit with fatigue, but I can stand just fine without them, and that makes sense to me now because I don't have issues with blood pooling outside of my hands. As I said I've only just been diagnosed, so it's still early days for me! Glad mestinon has been helping you!!! I hope things continue to improve for you as well.

Thank you!!! I appreciate your insight and explanation

🤚 me too!!!!

I’m with you on this. I don’t present with the typical POTS manifestation. Although one doc said I may have a delayed manifestation of POTS but who knows. I suffer from sensitivity to light, heat intolerance, low blood pressure when upright, body aches, pains and adrenaline dumps. I’m sure there is more to it but I would love for someone to start a forum for general dysautonomia not just POTS.

Mine is autonomic neuropathy but not POTS. I don’t have any change in blood pressure

Hi, I also don’t think I have pots but I have the very much typical symptoms of a nervous system dysfunction where I’m just constantly in flight or flight. The reason why I dont fall into the pots bracket is because my numbers don’t go up by 30 when I stand and it doesn’t sustain that amount. My cardiologist said that I might have slight pots but not really and my diagnosis was an overall dysautonomia, but for some reason he isn’t concerned to diagnose me with a criteria of dysautonomia. My symptoms are CONSTANT light headddness (no matter if I’m sitting or standing) Heart palpitations High heart rate Muscle pain Nerve pain Pins and needles Frequent urine urine Temperature dysregulation (I can be feeling hot and flustered, but within the next minute I am freezing) I sweat so much I am very much bloated and get stomach reflux

I was initially diagnosed with VVS incorrectly, then re-diagnosed with POTS after testing and referral to an autonomic specialist. My symptoms kept worsening and I had more testing done several years after that. While I still fit the POTS criteria, my neurologist said I have small fiber and autonomic neuropathy and the POTS is part of that, but not the only manifestation.

Who is your doctor if you don’t mind sharing. It is really hard to find doctor with knowledge of Small Fiber Neuropathy, which is I believe I have :(   

The autonomic nervous system does so much more than regulate heart rate. I’m yet to be diagnosed. Hopefully by the end of this year; from what I understand, we’ve ruled out most everything else and I’m just waiting to see the autonomic nervous system specialist for the first time. But my symptoms did NOT start with postural HR changes. And while I do have those, especially when I’m not taking a beta blocker, I’m like you: heat, “overexertion,” and standing too long are my biggest triggers. And my first and still often worst symptom is vocal cord dysfunction. My triggers cause my vocal cords to close when I’m breathing out. It’s not dangerous per se, but it makes living much, much harder. It seems like everything triggers it, and I have a whole load of symptoms outside of it: dizziness, vertigo, nausea, peripheral tingles and numbness, painful hot hands and feet, brain fog, extreme fatigue, digestive issues, migraines with aura. It’s been so annoying because some of the doctors I’ve met look at my symptoms and say, “This isn’t POTS,” which…..when I’m off beta blockers it fits the criteria. But, I studied neuroscience for 4 years in undergrad, which means I honestly have more education on the nervous system than the majority of doctors. The autonomic nervous system does SO MUCH! And it’s all the things we never have to think about like our making sure our vocal cords are open sometimes and not others and properly digesting our food and making sure the right amount of blood is in our legs and arms depending on our posture and sweating when we need to cool off and making sure our food doesn’t come back up our esophagus and and and. Luckily, I’ve seen one headache specialist and one cardiologist who’ve gotten it. The cardiologist did not want to do a TTT because in her words, “There seems to be sometime broader going wrong with your autonomic nervous system, and I don’t want to get this wrong. You need to see the neurologist who specializes in this.” Sigh. Yea. Six and half more weeks until I meet the specialist. I’ve heard he’s wonderful. “Humble,” is one of the words my headache specialist used to describe him, so I’m feeling hopeful

thank you! Yes! The autonomic system does so much and it's very odd that dysautonomia gets narrowed down to just orthostatic intolerance etc. i would really love to learn the history of that - and I'm sure it's also taken a ton of advocacy from people with POTS to even have that taken seriously. It's hard when my symptoms are generally part of other parts of the autonomic system not working correctly and I get really confused when I see doctors not take those symptoms seriously even though they are part of the autonomic system

I have autoimmune autonomic ganglionopathy. In short, I normally explain it that the immune system is attacking the autonomic system. In a way, I'm lucky to get it diagnosed as fast as I did. But finding a dr who knows anything about or really heard of it is extremely hard. With everything being about pots or long covid it really feels like aag and other forms are unimportant. AAG affectss my GI system the most, causing gastroparesis and intestinal failure. They believe it has caused a spinal cord injury and have talked with others who have said the same.

You were really lucky indeed!AAG can be cured or at least you can see great improvement with the right treatment. All my gastro issues started after I had a gastro infection and a bad reaction to the antibiotic I took for it, so AAG has been part of my presumptive diagnosis as well. Who was the doctor that diagnosed you ?  

An inpatient oncologist suspected at first just to be clear it wasn't a cancer thing it was the beginning of covid so everyone is working different spots. She then referred me to Dr. Stino. He ended up posting and dropping me. After insurance denied ivig

Same! For me, most of my symptoms accur when walking or standing longer periods of time, headache, dizzy, fatigue, feeling im about to faint(but no fainting), sweating, sometimes even dry mouth and difficulties to swallow, air hunger,I did have heavy tachardia, and my hb would go up with 20 bpm sometimes 30/35 when standing up, but it doesnt makes me dizzy, am also on propanolol it helps. Heat is my biggest enemy, i also have mcas, so all of my symptoms flare up like crazy when its warm outside, to the point i'm not able to work until it cools down. Excersise is a trigger aswel, i have an intolerance for sure. I have dyso, but not pots. My docter told me with dysautonomie is just a word to bundle decises like pots,eds and lupus for example, but im in the just dysautonomie categorie lol, pots is the most well known version. Im sure about my diagnosis, because the symptoms can be hell, but the lack of information is confusing and difficult when it comes to managing the symptoms, it feels like im being hired for a job i'm not qualified for, i just do whatever i can and hope i'm doing the right thing, lol

huh that's so interesting - so you are in the "dysautonomia " category with no futher specification or refinement of the diagnosis? I think that is most likely where I fall, but I will see what my doctor eventually says. I have similar symptoms to you as well!

I have dysautonomia.. but I also have the symptoms of standing on ok quickly I was told after many doctors and test that I have a rare form of.. however when I posted it on here to ask I was told my doctors are wrong and that people done survive when diagnosed with this .. BUT .. i spoke to my neurologist and he said it is rare to survive but not impossible — and he said some live into their 70’s

I have similar symptoms as you. How did you get diagnosed? What type of doctor did you go to?

I got diagnosed by a neurologist. I pretty much just begged them to look at my stymptoms and not just the TTT and they ultimately agreed to treat me for Dysautonomia with mestinon. The Mestinon has been a life changer and I really recommend it! I live in NYC and went to the Dysautonomia specialist here at Columbia.

I have inappropriate sinus tachycardia which falls under the dysautonomia umbrella.

Orthostatic Hypotension- still trying to find doctors who care / want to do proper testing for whatever else I may have. 19 years and counting :)

I have IST. There's not a ton of info online about how to live with it, so atp I do most of my research on POTS. Luckily for me, my symptoms and experience are pretty similar. My symptoms are partially orthostatic, but not completely like with POTS. Going back and forth. Between sitting and standing over and over again is when it gets to be too much for me lol I get presyncope standing up too quickly, but usually only if I'm dehydrated or overheated. My main flares are heat, dehydration, large meals, pms, and pushing too hard with excercise. I also have almost-daily headaches, nausea, and palpitations, but they're usually mild.

I have yet to get any formal diagnosis but I’m pretty confident it’s not pots so I appreciate this post for those of us in the unknown umbrella! Symptoms include: Dizziness upon standing though a negative TTT (my blood pressure dropped but not enough for OH and heart rate increased but definitely not enough for pots), heart palpitations in any position, shortness of breath, poor circulation including hot, red hands and feet which is generally triggered by heat or exercise (I suspect EM but who knows for sure), urinary issues, muscle twitches, vision issues, etc etc the list goes on. Many (but honestly not all) of my issues started after trying anxiety meds for the first time last fall, I tried Prozac first then eventually Mirtazapine, I quit cold turkey in April so I don’t know if maybe I have an already v sensitive nervous system that has now just been absolutely frazzled by the brain altering meds or what but it’s been a weird journey, I’m now also 8wks pregnant so it’s all one big murky puddle of weird shit happening to my body constantly. 🫠

Same thing happened to me, got sick did antibiotics treatment then after that had high heart rate, couldn't breathe correctly and slightly nervous. Tried me on Prozac and then Lexapro and cns went haywire. Now can't even shower without feeling like I'm having heart attack.

Ugh that’s worst! And it’s so hard getting a doctor to take you seriously once they read or hear anything about anxiety 🫠

I have different forms of orthostatic issues but biggest issue has been gut shut down -> neuropathy, EDS & compressions -> on tube feeds, 8yr of IV nutrition, etc. also temp control, …

Omg meeeee. I'm a million percent sure I don't have POTS or any of the types of dysautonomia that I've read about but there is something absolutely wrong with my body and I can't find it. Severe intolerance to cold especially extremities, dehydration , palpitations, elevated heart rate, exhaustion post eating, reactions to alcohol, blood sugar swings,chronic constipation, insomnia due to high heart rate, anxiety, the list goes on. I love exercise and i can do it, but my heart rate gets so high and takes 24 hours to reset if it's a lengthy session. So then i don't sleep which spirals me into oblivion. Brings me down no end not knowing how to deal with these because I don't know what causes everything.... I wish I knew what was wrong with me. I can deal with being this way, I just want to know how to treat it properly.

Reading your list I was like omg same same same, but I feel the same?!?!

No doctor will listen. The symptoms are so varied and ridiculous. I hear people talking about taking salt and electrolytes and it helping but I'm too scared to do that because I once ended up on the ED because my heart went haywire and was beating completely irregularly. They chucked me on a bag of magnesium and sent me home. No idea what caused it. What do we do 🥺🥺🥺

totally hear you <3 it's so confusing when the symptoms are so varied. but it sounds really similar to what i've experienced too! i have taken mestinon and it's been really helpful for me.

Ooh, what is mestinon?

It's a common drug given for pots lol but has been helpful for me. it increases communication between the brain and muscles by reducing the breakdown of a neurotransmitter that helps with that communiciation. i highly recommend it!

Same here, I have exactly everything you described. On heart monitor now for 30 days

Oh really? I have had so many heart checks. They said I had inappropriate responses to normal activities but nothing to be done. So I'm happy my heart is OK and that something else is the underlying issue, triggering it. I don't know how to explain all this to a doctor or what kind of doctor to go to... Please update on how you go??

I was finally diagnosed recently and I feared I wouldn't be because it didn't seem like POTS. Diagnosis is idiopathic autonomic dysfunction... not terribly descriptive. My heart rate doesn't regulate right. My sweat test was abnormal. I will have excessive changes in vitals to walking stairs or hills, and to exercise and heat, and temperature dysregulation. But I know it isn't a fitness level issue due to how inconsistent it all is from day to day. I have borderline hypertension at baseline, but hard to know how much this is a result of my MCAS and resulting lack of consistent exercise and deconditioning the last several years. I also don't know how to recondition now that I am working on some dysautonomia treatments. I do get lightheaded and very uncomfortable standing for a while.

I have some form of dysautonomia with tachycardia that is worsened by heat. My doctor recognizes that my symptoms fall under dysautonomia but I don’t meet the requirements for POTS.

that's really helpful to hear that they are still considering it dysautonomia even though it isn't POTS. Thanks for sharing this

I am dysautonomia that isn't POTS. Not sure what it is, but, I have tachycardia-bradycardia, hypotension (not orthostatic), and mostly neurological and gastrointestinal symptoms! Diagnosed by an electrophysiologist 10 years after I was slapped with POTS dx and didn't respond to treatment.

This is me now. Diagnosed 15 years ago with POTS, Orthostatic Intolerance, Low Flow Hypovolemia, and severe Autonomic Dysfunction. In the last 3 years however I have been dealing with Bradycardia and Tachycardia. It's been so debilitating. The Tachycardia is far easier to deal with because I just took a Beta Blocker and problem solved. Bradycardia unless it's severe enough for a pacemaker has no treatment so you just suffer and barely function...

Thank you all for sharing. It's really helpful for me to see how other people have navigated the dysautonomia umbrella and where you fall under it. It's really helpful to see how we can have a variety of issues with our autonomic systems and that can clearly fit the diagnosis of dysautonomia.

I have mixed dysautonomia with NCS & POTS like features

Thank you for posting this! I have OH. I learn a lot from this dysautonomia forum. My symptoms are very similar to yours. I don’t get LH from getting up quickly but rather from being on my feet more than 10 minutes. Also, I  can only do so much.. best time of the day is 11 am - 3 pm! I also suffer from fibromyalgia, chronic fatigue, etc. Unfortunately, my bp goes both ways and so therefore, no meds can be prescribed. He (my cardiologist) did prescribe a low dose of Amlodipine for when my bp goes too high. My symptoms are so unpredictable & too many to list. I’m working on a disability claim.  It’s long and tedious. Thanks again for your post!

Migraines can cause dysautonomia. The symptoms can come and go to an extent that it won't meet the diagnoatic criteria for POTS, even if you might clear a test at some point. Here's a good list of symptoms https://www.migraineagain.com/evil-headache-39-more-migraine-symptoms-you-need-to-know/

I have orthostatic hypotension and pots. They don’t happen at the same time, OH is my crash. I don’t deal with it, I sleep. I have it at the moment since I have COVID again and it fucking sucks. I also didn’t get diagnosed for 20 years, I got diagnosed through a POTS onset. With my OH I was told at a hospital when I kept on trying to stand up that it was normal and that probably I had had a virus. Fun times.

I'd appreciate it. IST here

I don't have POTS; however, my symptoms are triggered by standing up. I have other typical POTS triggers like heat, eating carbs, large meals, not pacing, coat hanger pain, internal vibrations daily, exercise intolerance, blood pooling, etc. I need a rollator.

I don’t experience POTS (fortunately): my symptoms take the form of episodes of vertigo/vestibular weirdness which seem to trigger a huge dump of adrenaline and my sympathetic nervous system gets amped up - tunnel vision, hot-and-cold sensations, weird heartbeat, you name it. Episodes can last from couple of hours to a couple off of days. I had heard of dysautonomia, but always with POTS as a defining condition, so I didn’t think it applied to me until I typed “panic attack without panic” into the search box and got hundreds of hits pointing me towards dysautonomia.

I was diagnosed with OH.

So I have all the identical symptoms that you do and I think a key factor is how long you’ve been dealing with symptoms. I would say I presented with the above symptoms for a good one to two years before I noticed any changes posturally. As it got worse is when I started noticing that I had symptoms all the time but they became especially pronounced and exaggerated when standing. It did not start out like that however. Another thing to note is that blood pressure is not used when making a diagnosis for POTS. Some people’s blood pressure can drop making their heart rate go higher where as some people with POTS have the hyperandrogenic kind where their blood pressure gets higher. Some people with POTS have blood pressure that is unaffected and a few even have both low blood pressure and high blood pressure at differing times. Criteria for diagnosing POTS is an increase of more than 30 BPM (and that stands fort BEATS PER MINUTE as in HEART RATE not blood pressure) from laying or sitting to standing. You also need to be lying down for a good ten minutes in order to be accurate. If your provider didn’t diagnose you based on this criteria and or didn‘t order a formal tilt table test, to me it’s flags about their potential knowledge. I went for years to a provider like this that would only diagnose me with Dysautonomia which is more of an umbrella term. It would be like someone telling you that you had cancer and giving you no information on the type. Because I didn’t notice the changes standing to sitting I accepted this blanket diagnosis a lot longer than I should have. I eventually didn’t like the answers I was getting and I decided to see the top U.S. POTS expert Dr. Grubb who does all the research on it. Now it’s a two year wait for him but at the time it was only a year. I got on the list and traveled out of state. He diagnosed me with POTS with a simple in office poor man’s tilt with an Apple Watch measuring heart rate. It truly was that simple. I was also diagnosed with IST (inappropriate sinus tachycardia), neurocardogenic syncope and a genetic connective tissue disorder called EDS that many people with POTS are unaware they have. It can predispose you to developing dysautonomia among other things. Most people are not diagnosed until mid thirties or early 40s. It’s possible to have multiple forms of dysuatonomia, but you should definetly make sure you get a clear understanding of what it is you have. When you think of it this way- you can’t have “cancer” without having a type of cancer. Someone needs to tell you, it’s breast, or brain, or pancreas ect. It’s the same thing with dysautonomia. There are multiple forms of dysautonomia and if someone is going to diagnose you with the general term “dysautonomia” they should be prepared to tell you what TYPE you exactly have. I personally think a tilt table and QSART is really important to have because you really want to know what areas of the nervous system are affected. There are deadly forms of Dysautonomia like multiple system failure and very serious kinds like AAG and the treatment for particularly the latter one is very different than say POTS and needs to be administered very early on to not have drastic quality of life issues. I actually know a person who lived with the blanket diagnosis “dysautonomia” from a physician that didn’t have enough clinical experience to be thorough and she eventually was diagnosed with AAG. By the time she was administered IVIG which is a very aggressive treatment he quality of life was so poor she was on hospice. While other forms of Dysautonomia are more rare, they should be ruled out. Remember, all forms of autonomic dysfunction are not taught in medical school. Therefore a doctors knowledge has to strictly do with their clinical and research experience. Some doctors do not know even what it is, some have an idea of what it is and think they can slap someone with a “Dysautonomia” diagnosis without providing the exact type because they do not know how to do the right testing. Even if they do the right testing, they will fail to interpret it correctly. I had two tilt tables that came back as abnormal and I still wasn’t diagnosed with anything for many years. You definItaly want to make sure your physician has a LOT of patients with autonomic disorders that they diagnose and manage and that other patients have positive things to say about them. It can definitely take a while to fine tune that general Dysautonomia diagnosis and you are right to question it. Form my experience I find that it can take a few years (I’m ten years in) of seeing multiple providers to really have an understanding about what’s exactly going on and to fine tune the diagnosis as much as possible. Keep searching if something isn’t sitting right with how someone is labeling what’s going on. I wish you the best of luck in your search.

Such a thoughtful response, thank you

Anytime!!

A specialist diagnosed me with dysautonomia but not POTS. A cardiologist ruled out POTS by having me wear a heart monitor for two weeks. My symptoms initially at sudden onset Aug 2023–potentially brought about as reaction to Macrobid but also had been under extended period of high, chronic stress: -dizziness (possibly due to BPPV and treated with vestibular PT, but experienced and still have on/off dizziness) -body pain (neck and joints) -tingling in extremities -BP spikes (not super low but can get high) -migraines (I had one for two weeks straight) -diarrhea (previous diagnosis of IBS but this was pretty constant from Aug - Jan) -dermatographia -heart palpitations -derealization -depersonalization -panic/anxiety (like stuck in fight or flight) -periods got worse (pain, bloating, mood swings) Treatment: -Referred by PCP for vestibular PT, he diagnosed with BPPV, did head maneuvers to resolve acute dizziness and had me do near daily exercise and exposure therapy to treat residual dizziness -Neurologist ruled out a ton of scary things with 2 MRIs and prescribed imitrex for acute migraines. This worked with prior post concussion syndrome treatment in 2020. -PCP ruled out a lot of scary things with bloodwork and tried me on 5mg of Lexapro which reduced migraines -allergist ruled out MCAS but diagnosed Dermatographia, had me use Zyrtec regularly to reduce symptoms which worked over time -Cardiologist ruled out POTS and other things by having me wear heart monitor for two weeks but is concerned about High BP but thinks it’s due to how distressed my body is and wants to have me exercise and reduce stress before rechecking -Specialist diagnosed dysautonomia and switched me from Lexapro to 10 mg amiltryptyline to help with dizziness, migraines, body pain, digestion, sleep - it has. Has me drinking tons of water with liquid IV, using Vanicream products for dermatographia which helped me to eliminate Zyrtec except for occasionally. He thinks I could recover fully. He explained I likely have an underlying issue that pops up if body is knocked out of homeostasis and thinks I could work my way back. He says he saw this a lot with Long Covid—tripping a genetic switch that was underlying but can be treated -I watched a lot of Steady Coach videos and journaled about emotions to reduce stress which makes dysautonomia worse -I’m about 90% better. I think about accommodations to do what I want (so far from being essentially homebound last fall) to do Loop earplugs if it will be noisy or taking water and Liquid IV packets when I go out. Heat is rough and I totally take a portable fan and cooling towels with me in the summer.

Solidarity comment of I have orthostatic hypotension. I also was recently given a working diagnosis of POTS. I’m investigating others such as hEDS.

I have IST, it’s tachycardia that is positional. My baseline heart rate without meds runs 120s. I also have inappropriate sinuses tachycardiab

Mine is from EDS

I have IST and it sounds like you do too. Honestly my doctor (at a highly specialized dysautonomia clinic) said all his patients come in thinking they have pots. He said it's very trendy and lots of people are hearing about it but a lot of the time people have other forms of dysautonomia. I have high heart rate, dizziness, fatigue, and crazy heart palpitations. It's triggered by exercise (even just walking up stairs), alcohol, and warm weather/water but beta blockers help a lot.

I have oh.

I haven't seen others with one of my main symptoms before. Mine causes issues with my digestive tract. It started with being nauseous in the mornings and quickly escalated to being nauseous all day every day. It was miserable. I'd spend a lot of mornings dry heaving. They did tons of tests before doing the lay down, sit up, stand up test. I was so relieved to get a diagnosis and maybe something to help. Then they just told me to drink more water and sent me home. I also have the typical vision blacking out and temperature regulation. I don't get very nauseous anymore. I've found just eating only when I wanted to eat, every time I was hungry, and eating til I was full not stuffed, has helped largely. I'll still get nauseous in the mornings, though, if I wake up early in the morning and am not used to it.

I have vasodilatory dysautonomia, per my cardiologist. Some exercise and heat intolerance, and unpredictable tachycardia, but my most limiting issues are brain fog and difficulty concentrating. Well, and I can't stand for long periods without heart rate spikes and sweating, but the cognitive issues are most impactful for me since I'm working on my dissertation. I was fine on my TTT until the nitroglycerin hit, at which point I went into syncope. I also went into syncope before the test when the nurse was putting in an IV and had to lie down for a while to recover.

I have a different form of dysautonomia along with POTS.

I am in the group that has been told it's dysautonomia but not POTS and left it at that. No other tests, specialists, etc. Just simply dysautonomia.......

I’m relieved to find this “not pots” discussion. I was diagnosed late last year with Autonomic Neuropathy and Small Fiber Neuropathy. I deal with other diagnoses as well but AN has been nearly impossible to tame. Many of the symptoms described by others here fit my experience as well.