vepa

I think everyone's sensitivity levels are different. I don't drink at all anymore, because even one drink leaves me feeling awful the entire next day. Also, I've had a couple instances where alcohol put my body into hypothermia. So I pretty much just avoid it. Coffee definitely raises my heart rate, but it also raises my blood pressure (which is normally extremely low) and lessens my dysautonomia symptoms. So for me it's beneficial.

Now that you mention it, I had a ton of energy after my surgery and can't remember any dysautonomia symptoms acting up. I don't think I actually made the connection at the time because I was a bit loopy on pain meds. But the anesthesia definitely could have been behind it.

I know there are a lot of dentists nowadays that do dental work under anesthesia for people with extreme sensitivities. That doesn't address all of your problems, such as the antibiotics, but it could prevent the issues with the odors. I'm also curious why you say it's dangerous to swallow? I've had some serious dental surgery done and everything they used was safe (in that it's not toxic to accidentally swallow a little bit of it, not that I should drink a bottle of it or anything). Are you unable to take any antibiotics at all? Is it due to allergy, or something else?

Do you already wear compression socks? I know those help me some when it comes to having to walk longer distances. Unfortunately, walking and standing is pretty much POTS biggest enemy. If it's truly getting hard, a wheelchair is an option. I use one when going with friends or family to things that require a lot of walking like museums or theme parks, because I know I would pass out if I tried to do the day on my feet. You could also see if there's anyone who lives near you and is willing to carpool?

Literally nothing gives me more anxiety than doctors. I was talking to someone the other day about some symptoms I get, and she was appalled at certain things I mentioned that I didn’t go to the ER for, but instead ignored. And I was appalled at how frequently she visited the doctor for things that I would never even consider going in for. But I've grown so accustomed to my body's quirks (10+ years before even seeking a diagnosis, a huge chunk of that occurring while I was still a child) that I've lost any standard for what normal should feel like and just assumed most of what I was dealing with was normal. And I also have this complex, where I minimize my own struggles and feel like being honest makes me seem dramatic. I do it with everything in life, but especially my health. I convince myself that I am a fraud. I’m not sick, I’m just lazy. Or a hypochondriac. In turn, this makes it hard for me to be honest at medical appointments. I don’t share the severity of my symptoms, or I leave some of them out, as an overcompensation for a fear that the doctor will see me as a fraud. I feel like a burden on doctors, that I’m wasting their precious time, or that they aren’t interested in my issues when there are people out there with “real” problems. I'm sure some of this stems from the generally dismissive attitude of doctors, but I seem to be much more apprehensive about it than most. So having this diagnosis is causing my mental health to spiral. I now know for a fact that something is actually wrong with me and I really want to find some sort of stability with my health, as my current state is not reasonable or something I should have to put up with. I got as far as a diagnosis, but so far the doctors simply advised me to increase salt and fluids,wear compression stockings, and stand up slower. That's not working, and I want a more realistic treatment. I know that in order to get that, I need to advocate for myself. But I'm struggling to figure out my next steps or get to a place mentally where I am capable of advocating for myself. I mainly just wanted to rant, but if anyone has any useful advice or commentary about this, I'd love to hear it.

As far as I know, gastritis just means your stomach is irritated. Its not a diagnosis as much as a symptom.

Yep. Unfortunately, the fun thing about the autonomic nervous system is that it regulates A LOT of body functions. So when it malfunctions, you get a lot of diverse symptoms. POTS is characterized by the standard symptom of tachycardia when standing, but it's symptoms can expand to so much more. I'm still developing new symptoms and I've been experiencing POTS for more than 10 years now. For me, my main symptoms are dizziness, brain fog, fatigue, shortness of breath, frequent hypothermia, digestive issues, joint pain, and migraines. But sometimes my body gets creative. I'm sure if I made a list of all the weird things dysautonomia does to my body it would be incredibly long.

This happens to me a lot. Interestingly, what I've found to be helpful is falling asleep to "sleep hypnosis" videos on YouTube. I dont really buy into the different benefits each video claims to provide, but it definitely knocks me out pretty quickly. I've had nights where I lay down and my heart is racing and I feel that overdrive sort of feeling, and then I turn on one of those videos and I'm out in minutes, so fast that I can't remember anything the video said the next morning. From my basic understanding of my doctor's explanation, it's a somatic sensory thing that calms the autonomic system. Its often used in PTSD patients when their brains are sending faulty flight or fight signals, but apparently also works when your POTS brain is sending random surges of adrenaline. Whatever the reasoning, it works better than any sleep meds I've ever taken, and my HR monitor doesn't show the crazy spikes of 150+ that I used to get at odd hours of the night

I think I'm going through some of this right now. Although my friends are very understanding and are truly good people, it's just hard to maintain friendships when I never have the energy to adequately contribute to those friendships. And I don't think it's realistic to expect everyone else to overcompensate for my illness, because even if they're able-bodied, everyone has their own things to deal with. That being said, my illness has also brought me new friendships with people who share similar struggles.

Does anyone else bruise ridiculously easily? I feel like every time I look at my legs lately, I have a new bruise. Right now, I can count 9. 3 on my left leg and 4 on my right. And I have no recollection of doing anything to cause them. I'm wondering if this is just another odd dysautonomia related thing or not.

NCS is a different form of dysautonomia that can be very similar to POTS, so I wouldn't pigeon-hole yourself into trying to get a POTS diagnosis. It's my understanding that NCS is more commonly diagnosed with actual fainting, because most POTS patients dont actually faint. But the initial treatment of salt and hydration is the same for both. And in fact, some doctors consider them all to be one disorder with multiple names. My doctors still can't agree whether or not I have NMH and POTS, or just NMH. My heart rate jumps by about 60, but my blood pressure also drops by about 40 upon standing, and some doctors say the heart rate is irrelevant if the blood pressure drops and others say you can have both diagnoses. And despite reading a lot of medical literature and asking doctors a lot of questions, I'm STILL confused as to whether NMH and NCS are the same. Some people say yes, some say no. But in the end it doesn't really matter because with all of these disorders, they focus on treating the symptoms. So the medications overlap, the lifestyle changes overlap, etc. If her heart rate is too high, they prescribe meds for that. If her blood pressure is too low, they address that. Etc. The label of the diagnosis doesn't seem to be super relevant. Dysautonomia is dysautonomia. POTS is just the most common type. I'd say definitely find a doctor familiar with dysautonomia so they can go beyond just saying to drink water and eat salt and instead consider other treatments, but don't drive yourself crazy about which type of dysautonomia they label her with. A good doctor will give adequate treatment regardless.

My POTS was episodic for a good chunk of my teenage years, which is part of why I never got diagnosed at that age. It became a lot more constant as I got older though. I suppose if drugs don't work in your situation you could talk to your doctors about a pacemaker? My doctor suggested one for me, because all the heart rate drugs lower my already super low blood pressure. But I said not yet. Above 200 really is pretty high, so you're right to be concerned.

The first reading was orally, and I had the exact same thought, which is why I decided to double check it with a second thermometer via the ear and got the 95.1. But then someone told me ear temps are supposed to be higher than oral temps so that means my oral temp would've still been lower than that?? Idk. I've started checking my temperature rather frequently out of curiosity, and it seems to drop low a lot more often than it goes high. Either way, I think I've only ever actually seen it at the expected 98.6 once. But it gets drastically less regulated and fluctuates back and forth a lot when I've had less sleep or if I'm stressed out. For example, this morning I had to get up at 4am and drive 5 hours to another town for work. I stopped at a convenience store to buy some coffee and their A/C made me start shivering uncontrollably. I went back to my car and blasted the heat and checked my temp and it said 96.0. Just from their A/C! So it's definitely something that I'll be talking to the doctor about soon.

Obviously, I wouldn't share anyone's personal or medical information without their consent. The people who participate are doing so of their own choice and have complete control over how much they want to share. A few people are already expressing interest so I'm pretty excited about it.

Since it's dysautonomia awareness month, I've been talking with a couple people about maybe starting a project that's based on the Humans of New York concept, called Humans of Dysautonomia, meant to feature the stories of people and their diagnoses. It's not going to be used to make any money or anything, and right now it's nothing more than a vague idea and a couple empty social media accounts, but if anyone else is interested in starting this with me, I'd love to connect with people who might be more creative than I am to get some ideas or input. I think it could at least be fun for our community and a great way to raise awareness or share experiences with our friends and family that might not really understand the ins and outs of our lives. If any of you are interested in this idea and want to be involved in this, I would love to hear from you.

I was actually having a discussion with someone about this, and we talked about doing sort of a "Humans of New York" sort of thing but instead it's Humans of Dysautonomia and it features people's photos and stories about how dysautonomia has affected their lives. I even created the social media pages and reached out to a local dysautonomia community, but that's about as far as it's developed so far. I'm hoping to actually get it off the ground and running this month, but would like input and help from other people in the community if you're interested?

Thanks guys! I'll work on collecting a little spreadsheet of dates and times and measurements. I think I get a little too anxious about talking to a doctor about anything these days. Maybe it comes from years of being dismissed prior to getting a real diagnosis, but I always feel like they're going to laugh off anything I say, or tell me I'm being ridiculous for being so obsessed. I even find myself questioning the accuracy of my equipment (heart rate monitor, thermometer, blood pressure cuff, etc.) because I feel like the doctors aren't going to believe me and maybe I am making a big deal out of nothing. I guess this is also a good exercise in working on my self-advocacy skills.

From my experience, I can say yes to most of this. I'm not diagnosed with POTS, but with NMH (Neurally mediated hypotension). It's very similar to POTS, with the difference being that, in addition to my heart rate usually spiking, my blood pressure drops drastically when I sit up or stand. I was only very recently diagnosed, but have had symptoms since I was 12 (I'm 25 now). One of the reasons it took me so long to get diagnosed was because my symptoms never really affected my day to day living for a long time. I would get really dizzy and my vision would black out if I stood up too fast, I often got nauseous in the mornings (which I figured out I could fix by downing a gatorade first thing) and I passed out a couple times when up in the mountains in the summers, but aside from that I played sports and was very active and seemingly healthy as a teenager. My family and I just dismissed the symptoms as a sensitivity to altitude, since I grew up in Colorado, and laughed it off. I never sought medical treatment for it. It was certainly not an everyday problem and I would go for months without any issues before it popped up again. It wasn't until recently that everything took a turn and started affecting my life in a very real way. I started getting heart palpitations, blacking out every time I bent over, feeling constantly exhausted, getting dizzy from sitting up for too long, and having absolutely no tolerance to cold temperatures. That's when I decided it was time to see a doctor and received my diagnosis. Funnily enough, similar to what you describe, when I went into a cardiologist appointment and they stuck the pulse ox on me for my initial work-up, I was sitting still in a chair and my heart rate went from 70 to 100 to 80 to 120 in about 2 minutes. The nurse was so baffled by it that she had to get another nurse and a different pulse ox to make sure it wasn't a technical issue. I almost laughed at the look of confusion on their faces. I often get lightheaded without tachycardia, and in fact, sometimes when I'm feeling at my absolute worst and I go to check my heart rate and expect it to be really high, it is actually extremely low (it can drop down to 40s if I overexert myself). I can also say that for me, standing completely still is ABSOLUTELY worse. If I'm sitting, my heart rate is between 70-90. If I stand up, it jumps to 120+. But if I walk around, it drops to low 100s. I'm not sure why this is, but I know that if I try standing completely still for more than a few minutes, I start to feel as though I am going to pass out. Whereas if I'm up and about and moving around, I usually feel relatively fine. Turns out that I've also naturally developed some countermeasures without ever realizing it before to deal with this. For example, I often stand with my legs crossed, or lean up against walls or furniture, and now I'm learning that these things lower my heart rate. Unfortunately, with my health in its current state, I have not been able to maintain my fitness level. I used to be very active. I would run, play sports, climb mountains, etc. But recently my exercise is limited to walking my dog a few times a day and even that can take a toll. I almost passed out in the park with her today. But I'm hoping that once I get this under control again, I will be able to get back into my old hobbies. As for your last question, I have a heart rate wrist band that I wear, though I often question it's accuracy, but almost every night it will say that my heart rate spiked extremely high while I was sleeping. Sometimes it goes up to 140+, which doesn't even usually happen during the day.

Do you live in the U.S.? If so, you do not need to prove disability to doctors or anyone else in order to get a service dog. The only time anyone would ask you to prove it is if you were to bring a legal claim against a business that denied the service dog entry. But aside from that, your daughter's medical records are strongly protected. All you would have to do is get and train the dog. Some organizations that train the dogs might ask you for medical records, but many of those organizations also charge outrageous prices ($20k or more) for a dog so I wouldn't recommend them anyway. I'm recently diagnosed and am in the process of training my first service dog. I hired a private trainer who helped me pick out a rescue dog and has been working with me to show me how to train her. This is a much, MUCH cheaper option, and the training process helps you to bond with the dog. We're five months in and she already knows most of her service tasks, we are just working on getting her obedience to a level of public-access standards (she's a bit too friendly with people right now). But she picks things up off the ground for me, brings me my shoes, and pulls off my socks (all things I cannot do since bending over causes me to black out). She also braces herself so that I can grab onto a handle on her harness and get up off the ground, alerts when my heart rate gets really high (or low) to remind me to sit down prior to passing out, and lays on top of me when my body temperature drops. I consulted with several trainers before hiring mine and every single one of them said that any dog can learn to alert, some just require more training than others. (Not all dogs can learn the level of obedience necessary for a service dog, though, so that's why temperament is important). When alerting, they aren't actually in tune with your heart rate or blood pressure. What they are doing is looking for body language, that you don't necessarily pick up on yourself, that signals the high heart rate or low blood pressure. All dogs are body-language oriented (it's their main form of communication) so they can all learn it. They just have to be taught to focus on their handler. If you're dead-set on the breed, you might have to start with a puppy, which will take up to 2 years to train. But you can try contacting some reputable poodle breeders as a first step. A friend of mine just went through this to get a german shepherd to train as a service dog. Really good breeders are able to pick out dogs that have working dog genes and a good temperament to train. But it's far less work to start out with a dog between 1-2 years old and that already has a calmer demeanor, so if you're willing to open up to other breeds or mixes, that's what I suggest. Again, keep in mind this is all based on U.S. law so if you live elsewhere, I'm not sure what the standards are. EDIT: I should add that you DO need a doctor's note for certain things like allowing the dog on an airplane or having it in an apartment that doesn't allow pets. I live in a cat-only apartment building, so I had to have a doctor fill out some paperwork and send it to my landlord to have the dog here. But aside from those specific scenarios, you do not need any sort of "prescription" for a service dog and a doctor does not have to approve it before you can get one and take it out in public.

Does anyone else have really drastic changes in their body temperature? I have been having extreme swings. I drank a cold glass of water too quickly the other day and my fingers and toes turned to ice and I started shivering. The thermometer said my temperature was at 94.6 (I double checked it with a second thermometer and the second one said 95.1). Then I took a hot shower to warm up and when I got out my temperature was at 99.7. I'm hesitant to even bring it up with my doctor because he already seems to think I'm too obsessed with paying attention to things like my heart rate and blood pressure and he's going to think this is my newest level of neurotic. But if these numbers are accurate, that means my body was literally in hypothermia. I'm not sure what that means from a medical standpoint or if it's dangerous, but it definitely freaks me out.

I know that if I look at a computer or phone screen for too long, I get an awful headache and some nausea. I've never discussed it with a doctor because I always just assumed it was a sensitivity to the light or something.

I posted awhile back about having trouble getting a diagnosis. I recently finally saw a cardiologist who was willing to do the stand-test and he diagnosed me with NCS and Orthostatic Hypotension. During the test, my heart rate jumped from 80 lying down to 130 sitting and 140 standing, which I thought met the criteria for POTS. But he explained that my blood pressure dropped by more than 20 points and they only diagnosed POTS if the blood pressure remains the same, because a drop in blood pressure always leads to an increased heart rate. I guess I'm wondering if that's accurate. It seems to conflict with my limited understanding via Google. I'd like to know if anyone was diagnosed with POTS with similar test results. And I'm also curious as to whether or not the diagnosis matters. It seems the treatment is the same (right now he wants me drinking 2l of water and on 3-5g of salt a day, no meds). Frankly, I'm grateful to have any diagnosis at all with how much I've had to fight doctors to get one, but should I still be pursuing a POTS diagnosis? Has anyone run into problems because they were misdiagnosed?

Hi everyone. I'm brand new to this thread, and here's the deal: I am absolutely certain I have POTS, but am unable to get a diagnosis. Since I was a young teenager, I've had issues with dizziness or blacking out when standing, my hands often going numb (and swollen and red), extreme fatigue, and headaches. When I read about POTS or read forums with people talking about POTS, it all sounds exactly like my experience. I have done the stand-test on my own multiple times, with consistent results of my heart rate going from 70-80bpm to anywhere from 115-150bpm. However, every doctor I have visited has told me it's simply anxiety, dehydration, or "completely normal to get a 'head rush' if you stand up too quickly." If I bring up POTS on my own, they brush me off. There seems to only be one doctor in my entire state that specializes in POTS and my attempts to schedule an appointment with her have been ignored. I also can't afford to travel. So I've basically just been trying to drink a lot of water and eat more salt based on what I've researched myself, but I'm not a doctor and have no idea what I am doing. I would really like to have an actual doctor to help me with treatment and to get officially diagnosed. I'm at my wits end trying to overcome the health care obstacle course. It's expensive and unbelievably frustrating.