vepa

Part of it is really just adjusting to a new lifestyle. However, also talk to your doctor, because I had assumed that my fatigue was just a symptom of my dysautonomia and nothing could be done. I mentioned it to my PCP and he had a different perspective. He ran a ton of bloodwork and found my vitamin D levels were very low and my testosterone was practically non-existent. I've been on prescription doses of vitamin D and testosterone replacement and have noticed a huge upswing in energy. Since talking about it on here, I've learned that others with dysautonomia also had similar nutrient or hormone deficiencies. Sometimes there are things to do to address the fatigue, so don't be too quick to just accept your fate.

I was quasi-vegan for about ten years (I ate eggs and cheese, but no other dairy and no meat). I definitely noticed that my dysautonomia symptoms got better when I added fish and dairy to my diet. My theory is that veganism does not cause dysautonomia, but if you already have it, a strict diet like that can make it worse. Being vegan is rough on the body. It's very hard to get all of the nutrients you need naturally, and your body does not absorb those nutrients as efficiently when it comes from a supplement.

Have you been diagnosed with dysautonomia previous to this incident? There are a lot of things that can cause fainting and breathlessness. If this were me, I'd be concerned that something else was going on. I definitely think you should get an appointment with another doctor for further testing. Dysautonomia can cause my muscles and joints to ache, but it's never the intense pain you are describing.

This is interesting! I grew up in Colorado and have the opposite problem. I had POTS symptoms since high school. When I went to college in Florida, I had four years of practically no symptoms. I came back after college and passed out within my first week back. If I go up into really high elevation, I am very dizzy and unstable. For a long time prior to being diagnosed, my parents and I simply chalked my symptoms up to being too sensitive to the altitude. Now I figure it has to do with how easily altitude dehydrates you, plus your heart has to work harder to compensate for thinner air, which combines with the high heart rate and easy dehydration of POTS and exacerbates my symptms. I've never tried the altitude sickness meds, so I wonder how that affects things or if that was a contributing factor in what made you feel great.

I'm glad you found something that works for you! I used to be so active and haven't found an effective way to exercise when my dysautonomia is bad. I wish I could swim, but I get awful vertigo and combining that with being in water is a bad combo.

Adrenal insufficiency is something that can easily be tested by an endocrinologist. It typically primarily affects cortisol, but can affect other hormones and can cause POTS symptoms. You can certainly have adrenal insufficiency and not necessarily have low adrenaline. I highly suggest you get your hormone levels checked. I mentioned this on an earlier thread, but many medical professionals categorize POTS as a syndrome, rather than its own illness. Even if you have POTS, the medical goal is to find out what's causing it. Its pretty uncommon to just have POTS without any underlying cause. So in your case, you could very well have adrenal insufficiency that is causing POTS. It's not necessarily a question of one or the other or a matter of differentiating.

I work part time evaluating attorneys across my state. So I'm only working maybe 1-3 days a week. But when I am working, I'm traveling. Up to 7 hours of driving somewhere, sometimes leaving at 2am, then a day of court, and then driving back home. So I'm out and about for 18+ hours straight sometimes. The way I see it, it has pros and cons. The long work days, and especially hours sitting upright in a car, are incredibly rough on my body. I have to be hypervigilant about hydration and not eating anything that my body will react poorly to. I often take a nap after court prior to driving home, and dress in layers to help with my body temperature regulation issues. That being said, I have up to 5 days a week off, which helps me rest and stay healthy. It's just about powering through the rough days and then being allowed nothing but self care the rest of the time.

For me, the Addison's test involved testing cortisol levels multiple times throughout the day via an endocrinologist. I was told that a single cortisol reading gives the doctors practically no information, since everyone's cortisol levels change drastically all the time. They have to look at how your levels change as the day progresses. I'm still being tested for pernicious anemia. My b12 levels are really high (>2000) without any supplements, which can be a sign that my body isn't absorbing the b12. But I have no ANA markers, so I'm going back in 3 months to check my b12 again. I've lost count of other diagnoses that have been tested and eliminated, but there are SO many things that could be the culprit. Typically POTS symptoms are an underlying syndrome of something else. In my experience, POTS as a primary diagnosis is kind of a last resort way of saying, "we don't know what's behind this."

As far as I know, super low bp is not really a diagnostic symptom of POTS. Some people with POTS have low bp, others have high bp, and others have a completely normal bp. As for the buzzing, and many other sleep related dysautonomia issues, the thing that helps me is sleep hypnosis videos on YouTube. My doctor suggested them and I cannot tell you how life changing it has been. They claim a lot of other benefits like "helps you lose weight" or "gets rid of anxiety" and I ignore all of that. But they are 8 hours long and they definitely help me fall asleep and stay asleep. My doctor said they're often used for PTSD patients because it helps calm the faulty flight or fight signals in their brains, but that they also work to help calm the faulty autonomic signals in dysautonomia brains (since it is, at the end of the day, a neurological condition). According to my heart rate monitor I used to get heart rate spikes of 150+ every single night at around 4am, and they'd often wake me up. Now my heart rate stays steady throughout the night.

It certainly could be POTS. I'd definitely schedule an appointment, but a key thing my doctor stressed when I was searching for my diagnosis was that there are other diagnoses that can look very similar to POTS. For example, my doctor wanted to make sure I didn't have Addison's disease or pernicious anemia, because both of those can cause autonomic symptoms but need to be treated differently than a POTS diagnosis. So be ready to go through what seems like a lot of unnecessary testing rather then simply being handed the POTS diagnosis right off the bat. At least, if you have a thorough doctor.

I get this too. I find that if I lie down as soon as I feel it starting, I can breathe easier and also prevent myself from passing out. Yes, I have lied down in the middle of a store before. At the very least, its much better than falling and hitting your head.

Yeah, prior to my period my symptoms get truly awful too. Tbh, before I was diagnosed, I often thought I just had really weird and extreme PMS symptoms, because the rest of the month I was practically fine and then the week before I would just pass out all the **** time. Do the Vitamin D supplements help noticeably? I'm still shocked my b12 was so high. It read as >2000, despite no supplements and an admittedly less than stellar diet. The doctor wasn't concerned about it though.

I add a salt tab to my smoothies. It's nice because there are so many flavors and natural sweetness that covers up the saltiness. I just dissolve one in a little bit of water and dump it into the blender with everything else. I don't even taste the difference. Mixing it into things helps me take it in slower, because if I just swallow the salt tab I get super nauseous. I also drink diluted Gatorade. Pure Gatorade has way too much sugar. But I do a ratio of 1/3 Gatorade and 2/3 water, plus a pinch of salt mixed in, and I find that helps immensely. Mostly because I HAVE to drink my electrolytes. Adding salt to my food doesn't do much other than give me stomach cramps and I still don't absorb fluids the way I should. But if I'm taking in the electrolytes with the fluid, it's more effective.

Hi everyone! My recent trip to the doctor included a lot of blood work. I had mentioned feeling fatigued (something I thought was simply a symptom of dysautonomia) and that my dizziness and blacking out was not getting better. I was hoping for some sort of treatment other than the salt and water I'd been told to consume. But my doctor focused on the fatigue alone rather than focusing on dysautonomia as a whole and said dysautonomia should not be causing fatigue, nor should it be causing the body temperature regulation issues I was having. So he checked for nutritional deficiencies, all of my hormone levels, and ran an ANA. It came back that my Vitamin D was incredibly low, my vitamin b12 was EXTREMELY high (even though I don't take any supplements and am pescatarian, which causes low b12 levels, not high) and my testosterone was very low. I'm a 25 year old female, and testosterone levels for me should range between 15 and 70, and mine was at 5. So he put me on an incredibly high dose of vitamin D and a low dose of testosterone to see if that would solve the fatigue. He sent the bloodwork to a pharmacy to compound my testosterone, and they noticed my cortisol levels were also off, which might be causing the body temperature issues. So they called him back and suggested he refer me to an endocrinologist. I'm about to start taking the vitamin D and the testosterone, and I'm willing to see the endocrinologist, but I feel like I'm being sent down a rabbit hole. Maybe I should be grateful at the level of thoroughness, since medical care usually goes the opposite direction and I get no tests, but I'd been convinced that both the fatigue and the body temperature regulation issues are symptoms of dysautonomia. All I wanted was a low dose medication to try and stabilize my dysautonomia, and instead I'm being sent to ANOTHER specialist. Half of me is happy I'm getting taken seriously, but the other half of me is very frustrated and tired of doctor's appointments. Thoughts? Opinions? Has anyone else had similar hormone issues?

I thought I recently saw a post on a thread about someone praising this drug and saying how much it helped, but I can't remember what thread it was on.

Dysautonomia is not a heart condition, despite often being treated by a cardiologist. It can occur along with heart conditions, or your heart can be perfectly healthy and your dysautonomia can be caused by something else. My doctor always stresses that it's important to remember that most forms of dysautonomia are NOT a diagnosis, but essentially a symptom/set of symptoms and are almost always caused by something else, which would be the true diagnosis. And that something else could be so many things. I'm in the process of being tested for autoimmune diseases and other things to see what's causing mine. I'm told that it's only once everything has been ruled out that a doctor should decide dysautonomia is primary rather than secondary, and even then that usually just means "we have no idea what's causing it." Having this explained to me made everything make a lot more sense. It's why dysautonomia is so complex and vague.

I'll agree with everyone that a tilt table is a far different experience. But also, if you do another poor man's tilt table, either on your own or in a doctor's office, it's important to make sure you're not applying any countermeasures. A lot of people with dysautonomia subconsciously learn ways to manage their symptoms, like bending their knees or tightening leg muscles when they stand up, which alters blood flow and lessens severity. That's why the Tilt Table is so effective - you're strapped down and less mobile and don't have the same impulses from muscle memory you have when you stand. So I'd suggest you try re-testing yourself but be very aware of how you stand and keep your body straight and still.

My understanding is that a big part of dysautonomia is our bodies not properly using the fluid we take in, hence the treatment consisting of a ridiculous amount of salt. Salt (and a little bit of sugar) is what makes the body retain water. So I guess if we're not retaining fluids, that would logically lead us to peeing them out faster and more often. Personally, I never, ever drink plain water anymore. Pure Gatorade has too much sugar, but I find a mixture of 1/3 Gatorade and 2/3 water, or a pedialyte or homemade electrolyte solution, drastically reduces the frequency of my urination and improves my dysautonomia symptoms.

I just graduated with my law degree and thankfully I'm going into a field that's somewhat flexible and kind of self-employed. I will work under a contract, but I have control over how many cases I take on and get to make my own schedule, which is super helpful in terms of my many doctors appointments and bad health days. I know that's kind of specific to me, but perhaps you can find work that gives you a lot of flexibility over your schedule and work load. Things like uber driving or similar apps come to mind, though those do not have benefits. I wish I could offer a specific answer, but I know maintaining employment is a huge issue for a lot of people with chronic illness. I will say I have a friend with POTS, and she works at a fantastic job with a local family-owned company and they are super accomodating for her. She sits at a front desk, but they let her service dog stay with her and they let her lie down and rest whenever she's not helping any customers. So maybe if you search hard enough, you'll get lucky and find understanding employers.

Psychologically, I find the label very helpful, but in terms of treatment, I feel like the doctors never seem to care that much. Dysautonomia treatment is essentially boiled down to treating the symptoms, so to them it doesn't matter what they call it, they're just focusing on addressing each individual issue. My first two doctors didn't even run tests or give me an official diagnosis, they just said to drink a lot of water, eat a lot of salt, and wear compression socks. So they knew the gist of the diagnosis and treatment, but didn't think the labels mattered at all. I find that if I want something specific like a true diagnosis or a specific treatment I have to be the one subtly pushing it without coming off as the patient who googled something and decided that made her more knowledgeable than the doctor, because I find that makes them even more dismissive. So instead I say things like "I heard something about X. Do you think that's what I have? Is there a test for that?" Or "do you think Y drug would be useful for someone like me?" Suddenly they feel like I'm asking for their medical advice and are much more open to it. It's frustrating, because it feels like you're doing the doctor's job and giving them the credit, but to me it's worth it for getting the care I need.

I just got back from the dentist and it was NOT FUN. The dentist told me I had periodontal disease and bone loss and needed a deep cleaning, even though I'm much younger than they usually see for this stuff and take pretty good care of my teeth. I've been with him awhile, so I trust him and don't think he was pushing unnecessary procedures on me, but I was a little surprised. As soon as he started to inject the anesthesia to numb me, muscles all over my body started spasming violently. He said it was probably a bad reaction to the norepinephrine, and since I have a fairly high pain tolerance, I opted to do the work without anesthesia rather than continue to experiment with my body's intolerance of it. This has never happened with previous dental work. After he finished, he said there was almost no plaque or tartar, and that he's never seen this stage of gum disease without plaque or tartar build up. He recommended I see a gum specialist to see what might be causing it. He also prescribed an antiviral and said that it's possible it is caused by a virus. I've always had bad teeth. No matter how good I am about brushing, flossing, and dental cleanings, I get frequent cavities and even had to have a couple oral surgeries as a child. Now I'm starting to wonder if this is somehow related to my dysautonomia. The dentist mentioned that it could be an issue of an unusually dry mouth, so I'm thinking I should also get tested for sjogrens. Has anyone else experienced anything like this, or am I too eager to blame everything on my dysautonomia?

I've found that lit screens, such as a computer or phone, make my migraines a lot longer and more severe. The second I feel one coming on I avoid electronics as much as possible and sometimes that can really shorten it's effects.

I'm currently only working part time and even that drains me. It's been incredibly frustrating to not be at the level of productivity that I used to. I really hope to get a handle on my health again so I can go back to working full time

It could be that your POTS disappearing with the stopping of medication was coincidental and you just have episodic POTS? Mine was episodic for years before it started acting up more permanently. I'm not sure the connection to the meds is something that will ever be completely confirmed, so if it were me, my next steps would be trying to manage the POTS as though it wasn't connected to see what else I could do for it. Personally, I'm in the process of getting tested for autoimmune diseases to see if we can pinpoint the source of mine. I also technically meet the diagnostic criteria for both POTS and OH, but my doctor said that they don't diagnose POTS if you have OH because a higher heart rate is a natural response to the drop in blood pressure. Selenium and zinc both exist in a huge variety of foods (pretty much all meats, a lot of veggies, and beans and seeds and nuts and rice and such) so it's possible you're consuming more than you realize. Ask your doctor if it's a concern, but my guess is it's not a big deal.

Have you shared these concerns with your doctor? I would keep track of your blood pressure and if the salt is making it even higher, then you should talk to your doctor about it. I was told that the increased salt intake was meant to increase my blood pressure since it's very low. I'm curious as to why you've been told to increase your salt with high blood pressure.