dizzytizzy

Just reading her reply ticked me off. That's fine if her medical opinion is that this isn't dysautonomia, but the way her message reads is very condescending. There are ways to communicate these things and not sound like such a "mean girl." Definitely seek a second opinion. Fifteen years ago, I had a range of weird multi-system symptoms following a case of suspected mono. After three years and many specialists, I received the dx of fibromyalgia. Now, about 12 years after that, I've gotten a dx of autonomic dysfunction. Not saying I don't have fibro, but I think it's possible I've had autonomic issues all along and no one picked up on them until my cardiac symptoms really amped up. And even those were initially dismissed as anxiety 😡 It might be worth seeing a rheumatologist as well.

@Weary Thank you for jolting me out of my pity party! I mean it, truly 😍 It's easy to get stuck in a cycle of feeling sorry for myself, but yes, I am so, so grateful that my husband and daughter are here. I know they get frustrated sometimes by the wonkiness and unpredictability of this illness (as we all do!), but for better or worse, they're here. So thank you for that. I'm sorry to hear about your mother and the resulting loss of social structure. Your experience has been similar to mine as I have found many people dropped away when I could only stay connected via phone/email/text and couldn't go out and be social, attend parties, etc. And, honestly, there are times when I don't have the energy to initiate contact through a simple text. I do get jealous of how effortlessly it seems for some people to just pick up and go, run to the store, take their kids to the park. I didn't fully appreciate that when it was still an option for me - something I surely do regret now.

@Pistol Yes! Same here. I was total type A, do it all kind of person. Working, cooking, helping friends/family, volunteering, parenting, etc. I'm still type A (in my mind at least!), but right now my body doesn't allow me to do everything I want to. While I think my husband and parents and maybe one close friend understand where I'm coming from, they seem to get somewhat uncomfortable when I discuss dysautonomia. I think they just don't really know what to say or do to help and that is tough for them. I do have to learn to adapt and appreciate this new for me normal. There is still much that I can do, as you alluded to, to still feel useful. And I may just take you up on the offer to reach out!

@Lainy I know, I know - I've really painted social media with a broad brush! Too broad, I think 🤔 This forum, for example, has been helpful in reminding me I'm not alone and that there are tons of other people who have had years/decades of "odd" health symptoms before finally getting this diagnosis. To compound the issue, I'm an introvert by nature and find that people, mostly just when in person or via the phone, can really drain my energy and leave me craving solitude. Then I go quiet and sometimes get too stuck in that mode for my own good.

I'm sorry you're having a rough time recovering. I don't have much to add beyond what @Pistol already advised, but it's way too easy to overdo it when you're feeling somewhat well or you just have to get something done/attend an event. Many of us are still trying to learn how to reconcile what we want/need to do with what our bodies can handle. Right there with you. Worst case scenario, I would imagine your sister would understand if you can't attend. My concern with attending the graduation is that you may get overheated/overstimulated and then be worse off for even longer. Not sure what the set-up is for this graduation, but the ones I've attended have always been crowded, stuffy, and usually way too hot.

Hi everyone, I've posted a handful of times over in the other forum, but thought maybe this belonged here. Do any of you guys feel so, so alone? I've been sick (with various ailments) for about 15 years now, beginning around the age of 22. Was just recently diagnosed with autonomic dysfunction though. I've lost a lot of friends and acquaintances over the years because I don't have the energy/stamina to go out and do a whole lot. I've had to bow out early at get togethers or forego them completely due to my health. Most of my energy goes toward taking care of our daughter first, and then everyone else just kind of gets leftovers - if there's any left to had! I stay away from typical social media too, because it largely feels fake and too much of "Hey, look at me!" It just doesn't feel genuine. And most of my family live in other states so it's really just me, my husband, and daughter. I feel so alone. We haven't told many people about the extent of my health conditions - largely because they're never "normal" things, always something odd that requires significant explanation and leaves me feeling too exposed and like a freakshow 😉 How do you all move past the loneliness? Have you been able to find genuine friends who understand your health restrictions?

@MomtoGiuliana @Pistol @whoami: As promised, I'm updating with my EP's response to the sodium/potassium conundrum. Here is his explanation of why increasing sodium will assist in potassium retention, at least in my case: "The relationship between the sodium and potassium is indirect. Increasing the sodium helps maintain the BP/stabilize HR which decreases release of stress hormones. These hormones increase the loss of potassium through the kidneys. So if we improve BP/HR, we will keep potassium levels normal by limiting the losses in the urine."

Yeah, I agree! He said that and I was like, "Yeah, that makes total sense." Still annoying and at times worrisome, but the theory eases my mind a bit.

@whoami - Maybe it's normal for some people, but that was one of the noticeable changes that occurred when I started getting sick and becoming symptomatic. I try not to chalk up every weird symptom to dysautonomia, but some things seem to be common and tie into it. The thudding/pounding heart beat is one of them for me. It happens mostly at night now for the first few hours after I lay down and sometimes periodically throughout the night, usually as morning approaches and my body starts to naturally "awaken" for the day. Oh, and after I eat sometimes. My EP thinks the nighttime thudding is caused by an abundance of stress hormones. He says that my body has been relying on those stress hormones to help maintain BP all day and when I lay down for the night, I get the harder beats because of the residual effect of the adrenaline/cortisol, etc. It makes sense and has eased up some since I started treatment. Before I was diagnosed, it would go on all night long. I'd have to take the full dose of Klonopin to knock me out and try to sleep through it. Now, I only take a quarter tablet and get more restful sleep. It's one symptom the EP believes will go away once we get my treatment plan dialed in a bit more.

@RecipeForDisaster: Yes! My 6 y/o sleeps in my bed and she'll say, "Mama, I can't go to sleep. Your heart beat is shaking the bed." Cue internal freakout on my end! It feels like it rocks my whole body sometimes and if I hold my phone or book on my chest, it moves to the beat too. I've been checking my BP/HR when this happens and they're not abnormally high, so who knows what the heck is going on. I've never had renin or aldosterone tested. When I first got sick, my cortisol was elevated, but we chalked it up to the stress of the sickness. Still debating about going through a wider range of autonomic testing - recently posted a topic about the pros and cons of doing so.

Yeah, @MomtoGiuliana and @whoami: It's all so confusing. I've had issues in the past with low potassium (just one of the reasons I am reluctant to try florinef), so the increased salt had me concerned I'd end up with even lower potassium. My EP does frequently remind me to eat a high potassium diet, which I do my best to abide by. I drink at least 8 ounces of V8 juice each day - getting some sodium and potassium in one go. I try to eat bananas, raisins, potatoes, beans, etc often too. I have to email him some of my vitals, so I'm going to ask again about it. I'll let you all know what I find out.

Hi all, Can anyone explain the relationship between sodium and potassium? I've been instructed by my EP to consume 4000-6000mg of sodium each day, which I get will help to increase blood volume along with the extra water I'm drinking. I recently had a follow-up with him and asked if increasing my sodium intake would cause me to lose/waste potassium. I was thinking there was an inverse relationship where if you increase one, it decreases the other. He said increasing my sodium intake would actually help my body hold on to potassium. I didn't dig any deeper into his response, but does that make sense to you all? I might need to email him for more details. In case it matters. I had been following a low sodium diet prior to diagnosis.

@MomtoGiuliana - I wear a Fitbit now too! Sometimes I have to take a break from it though because I feel like I start to obsess about the numbers and that doesn't do me any favors. The heart rate increase would wake me up. HR would usually be in the mid-80s and would just feel like it was pounding hard. Within about 10 seconds of my waking, it would start to increase - usually up to about 160 bpms. The first few times this happened, I landed in the ER because I thought I was having a heart attack or something. The ER said it was anxiety 😡 Once I met with the EP, he informed me about vagal maneuvers and those worked to slow it back down. Most of these episodes occurred between 4-6am. My EP now believes that these were due to stress hormones. Since things like cortisol and adrenaline start to naturally rise around those early morning hours, my body was reacting abnormally to this normal occurrence. He thinks my body was also relying on stress hormones to maintain a steady BP so it was likely that I had higher levels of these hormones to begin with too. Add in the early morning rise that is supposed to happen, and my heart just freaked from the abundance of hormones. Hope that makes sense. Definitely worth asking your doc about. I haven't had any more of those early morning episodes since upping salt/water intake and taking midodrine. RE: vitamin deficiencies. I've frequently been deficient in B12 and vitamin D. Ferritin has actually been good, but iron saturation has been on the low side.

Hi @MomtoGiuliana. I truly think B12 is part of the dysautonomia issue. I was just recently diagnosed with autonomic dysfunction (don't what "flavor" though) and also have low B12. When I first started getting sick, I only had bouts of nighttime tachycardia. My PCP checked B12 because I also have Hashimoto's and she said B12 and Vitamin D deficiencies frequently go hand in hand with thyroid issues. I believe it's thought the body burns through more B12 when it's under stress - so clearly anything autoimmune, POTS, etc could contribute to that. Not to mention the absorption issues you touched on. I actually just finished once a month X 3 months injections and my B12 was still low. I'm now doing another 3 months of them and adding in B12 sublinguals. My PCP said I may just be one of those people who will need injections for life. Interestingly, my B12 was 1000 back in January 2016, so you can see how absorption and/or body needs and usage change over time.

UPDATE: Had follow-up with EP today. He's not concerned by anything on the 30-day heart monitor. He still feels we are dealing with autonomic issues. He believes that, functionally, my body's ANS system is intact, but I have an abnormal response to changes in position - so an abnormal response to a normal occurrence. His goal is to get me off all medications and is only using meds to help tide me over until we can get back to "normal." He wants me to focus on exercise on the recumbent bike as well as fluids/salt/compression and he thinks that gradually my system will straighten back out. He did say that I will likely forever be susceptible to "breakthroughs" even once we get back to an even keel, where being in the sun for prolonged periods, coming down with the flu/illness, going on a long car trip, etc will likely cause things to flare back up from time to time. I pressed him on the need/benefit of doing more elaborate testing - formal TTT, blood volume, QSART, etc. He referenced research by Dr. Grubb that indicated knowing what "type" of autonomic dysfunction wasn't necessarily beneficial as there isn't a set/approved treatment protocol for each type. It frequently comes down to trial and error to figure out what works best for each individual. So @Pistol and @yogini nailed that on the head! He said if I had escalating issues despite treatments, he would send me to Cleveland for a workup by Dr. Jaeger to ensure there wasn't something else going on. I do think I'm still going to pursue the full workup for sarcoidosis, but will let things lie for now with the dysautonomia. Told EP I was very hesitant to add in florinef right now and he was totally fine with that. He said it was a tool in our arsenal if we needed it. He also said I can adjust my midodrine up and down as needed based on how I'm feeling each day and/or what activities I may be doing (i.e. outside in the heat, running errands vs lounging at home). So all in all, I think it was a good appointment and I feel somewhat relieved!

Thanks for sharing your background, Pistol. That's crazy about your testing results! And like you said, I suppose what makes this disease so difficult to live with, diagnose, treat. We all present so differently. I'm not necessarily a black and white thinker, but I'd like some reassurance that we're on the right track and not missing something. It's been a very scary ride so far as you all are well aware yourselves. Are your symptoms under control? What treatment did you follow? I have so many odd symptoms that have racked up over the years that I was hopeful maybe it would all come together into one diagnosis now. I do worry about not being sufficiently treated for some underlying issue and then being up a creek when someone figures it out years later and it's been left to fester. When I first got sick in 2003 and landed with an eventual dx of fibromyalgia around 2006, I actually think it was my Hashi's starting up at that time. I didn't get a Hashi's dx until 2014 when my new PCP ran the full thyroid panel. Up until then, only TSH has been done and I didn't know better to push for the others. I was worried about catecholamines just because I was so jittery and the tachy episodes came on so suddenly, so EP did a 24 hour unine metanephrines test which was normal. Like I mentioned up thread, I've only seen him once in office so far and he believed the nighttime tachy (which was the only symptom at the time) was due to something like supraventricular tachycardia, excess adrenaline, or my body's reaction to normal amounts of adrenaline. He also mentioned the BP dysregulation at that time. I've only seen the brief narrative for the 30 day heart monitor which said no cardiac arrhythmias, but mentioned sinus tachycardia. I'm curious to see his interpretation of it. His nurse called me yesterday though and said that everything still points to dysautonomia as I've obviously been worried about some undiagnosed heart condition since all this started with the rapid heart rate. Sigh, it's all so convoluted and messy. I have a six year old daughter and this has really brought mortality concerns to the forefront.

I was thinking TTT, QSART, blood volume, lying/standing norepinephrine - pretty much the full gamet of tests that places like Cleveland Clinic and Vanderbilt seem to run at their auto clinics. At the very least, a formal TTT would ease my mind a bit since we haven't done any testing with continuous monitoring of BP/HR. I've had several EKGs and a 10 and 30 day heart monitor. Looking forward to hearing from him about the 30 day monitor results at my appt. Yeah, florinef just scares me. My sister has ulcerative colitis and has been on and off steroids for 20 years now and I've seen the toll it's taken on her body. I worry that the side effects will outweigh the benefits. And I do agree - it we're going to do more testing, do it before I trial something like florinef. I increased the dose of midodrine today. Not as much as the EP wanted as I tend to be sensitive to meds and want to go up slowly. It did cause some chest heaviness/pain, which is new for me. Willing to give it a few days at least to see if those symptoms subside. Didn't notice an increase in BP today, but we'll see.

What was the testing you did for that, Kim? I've had a positive skin biopsy that showed "non-necrotizing granuloma" but the pathologist wouldn't go so far as to actually rule in sarc, but did say it couldn't be ruled out. Others have told me I should have a PET scan to look for sarc in other areas of my body. I've had elevated vitamin D 1, 25 several times now too, which sometimes accompanies a sarc dx. Chest xray and ACE have been normal, so local rheumy was taking a wait and see approach. I thought the biopsy would be enough. Mainly that we are actually dealing with an autonomic issue and we could quantify the type of OI it is - POTS, hyper-POTS, neurocardiogenic, etc. - in order to better guide treatment. So far, they haven't required any specific testing. They've been covering my meds, visits, etc. Because all of this hit the fan in January, we've actually already reached out maximum out of pocket expenses for the year, so we would be zero OOP so long as we stay in network. I've been sick since 2003 (on and off with weird symptoms like most of us) and I see this as a chance to dig deep and maybe find out what's truly going on. So far, he has. I've only actually seen him once in office. Most of these med changes have been done via phone/email based on my orthostatics I send him and my symptoms. I'll know more when I talk to him next week, but so far he hasn't suggested TTT or anything like that and seems fine to treat without concrete "proof."

Hi everyone, I've posted my hx on here once before, but essentially I'm a 36 y/o female with previous diagnoses of Fibromyalgia and Hashimoto's. In January of this year, I began having early morning tachycardia upon waking (usually between 4-6am) that would go to roughly 150-160 bpm. After several scary ER visits, all they found was sinus tachycardia and blamed anxiety. Finally saw a local EP and he said it was autonomic dysfunction, specifically he said blood pressure dysregulation. He has me on increased fluids/salt and midodrine. My symptoms have progressed to tremors, weakness, dizziness, lightheadedness, etc during the daytime hours. The nighttime episodes have mostly stopped. If they do occur, I can stop them with a vagal maneuver. He now wants to increase the midodrine and add compression stockings - to which I'm not necessarily opposed. However, he also wants to add florinef, which I know can be really hit or miss with patients and seems like a much stronger med that I'm really not sure I want to take. Before we keep adding meds though, it seems prudent to do the full range of autonomic testing. I have an appt with him next week and intend to ask about this, but wanted to hear from you guys. I have done a Zio patch, echo, and lots of blood tests prior to this - electrolytes, thyroid, CBC, etc but nothing really specialized. Isn't it beneficial to complete the testing so we know exactly what we're dealing with? So far, he's basing this off of an in-office 2-minute poor man TTT and reports of my vitals/symptoms that I send to him. I did do a 30-day heart monitor which I'll learn the full results of next week. I also want to dig to find the cause of this as well (i.e. possible underlying disease process) and not just treat the symptoms. Sarcoidosis has been on the radar of my rheumy in the past and believe that's worth checking out too as dysautonomia can be secondary to that. TL;DR: Is undergoing the full range of autonomic testing important? Or can you be properly diagnosed and treated without it? Can you determine the underlying cause of your ANS dysfunction without it as well?

I don't have an actual dx as of yet, other than my EP said that I have BP dysregulation. But my high heart rate episodes would only occur at night and wake me from sleep. I'd wake up and could tell my pulse was rising - started in the upper 70s/lower 80s. Within about 10-20 seconds, it would be in the 150s/160s. With vagal maneuvers, cold compress on face and deep breathing, I can get the episodes to pass in 15-20 minutes. Currently wearing a 30-day heart monitor and the episodes they have caught so far have shown sinus tachycardia. I'm a bit jittery during and for a bit after, but nowhere near as bad as when I have to call 911 and go through all of that. I stay jittery for hours afterward in those cases. So, sounds similar to your episodes. But again, EP said I don't fit the POTS dx, but have some type of dysautonomia going on.

Definitely, yogini. Did any of you see a decrease in BP and HR when increasing fluids/salt/midodrine? My orthostatics this AM were lower and less varied. I think the less varied is a good thing, but I didn't expect the overall drop. I thought all of the fluid/salt/meds were actually supposed to increase BP and lower heart rate. Supine 92/58, HR 56 Standing 2 minutes 99/70, HR 64 Standing 5 minutes 105/74, 72

I've been away for a bit, but thank you for weighing in. The amount of stress this has caused has really gotten to me and the fatigue (which feels very similar to the fatigue I felt when I was diagnosed with FM in 2005) makes it difficult to care for our daughter. Interestingly, I've read that there is a lot of crossover between FM and ANS dysfunctions. I feel like this may just be a "flare" or continuation of the FM or another aspect of it showing its face. I never really got better after the FM diagnosis and I didn't pursue any treatment for it, but I just learned to live with it and eventually settled into my new normal. I was only 23 at the time and all the doctors just wanted to give me anti-depressants and send my on my way anyways. That wasn't the route I wanted to go. I ended up cutting gluten and dairy out of my diet and felt quite a bit better. The stomach troubles I had had all of my life went away at that point too. The EP now has me drinking 2L of water daily along with consuming 4000-6000 mg of sodium. He's also upped my morning and noon dosage of midodrone to 5mg. When I asked him what we are aiming for blood pressure-wise, he said he is less worried about the numbers and more worried about the symptoms I'm experiencing. He said if the body is under stress trying to regulate the BP, then we need to take action. My husband has high BP/cholesterol issues and has been advised to follow a low-sodium diet, so I have been following that with him for the past year. We cut back even more in February and then in March is when I had so many episodes. I'm guessing I was doing more harm than good by going so low-salt. Funny how the research isn't that strong in support of low-sodium diets once I started digging into it.

Unfortunately, they never had me track orthostatics prior to taking the meds. Docs only ever did BP sitting down, except for one trip to the ER for the heart racing they did a bedside TTT. But there wasn't any significant variation in those numbers I was told, perhaps because I'd just gotten a full bag of fluids? The EP did have me lay down, then sit up, then lay down, then stand up in very quick succession during my consultation. He was taking my pulse the whole time and that's when he told me I had some autonomic dysfunction regulating my BP. Never game me any hard numbers though. I did flat out ask him if he thought it was something as severe as POTS and he said no at that time. He suggested it may mostly be from me pulling back on cardio, which is what I did when I kept on having the weird nighttime tachy. He told me to increase fluids and salt (so I'm assuming he was thinking low blood volume) and get back to doing cardio as it would help the blood vessels in my legs function more efficiently. That's when I was fitted for the 30-day monitor as well to see if we're dealing with any arrhythmias. I did take stats this AM before taking my midodrone. Not sure if there is a "rebound effect" that would cause these numbers to be skewed, but I thought I'd give it a go: Supine after 5 minutes 109/69, HR 72 Standing after 2 minutes 115/84, HR 82 Standing after 5 minutes (just to see what it would do!) 114/90, HR 90 My heart started pounding after standing and I had very shaky legs at the 5-minute mark. To me, it does look like I'm struggling to move blood volume around and that's why my diastolic is rising. It's typically always ran in the 60s to low 70s prior to this, but that was always sitting or lying as those are the only ways docs/ERs ever seem to take it. I'm certainly more dehydrated in the mornings so that could be a factor too. It's all just such a pain to figure out. I did do some balance function testing after the first tachy incident and was told I had a vestibular imbalance causing the dizziness/vertigo. So maybe that's true or maybe it's just all part of this whole thing where my ANS is off? I haven't had a chance to do the vestibular physical therapy because I've felt so poorly.

Hi everyone. Newbie here in the process of getting a diagnosis. For the last half of 2017, I was noticing palpitations (not racing but skipped beats) and having dizzy/vertigo spells while driving. I was under a lot of stress and chalked it up to that. Fast forward to one morning in January 2018, I was sleeping and rolled over to find a comfier spot. Heart kind of flip-flopped and then started racing. I called 911 because I didn't know what the heck was going on. I was at 160 bpm when they arrived but quickly came down into the 130s and was in normal sinus rhythm. Transferred to hospital ER and nothing was really found except for low B12 and vitamin D which are currently being treated. Consulted with a cardiologist soon after who ordered an echo and 10-day Ziopatch to monitor my rhythm. All results came back normal. He suggested it was anxiety and said I could take a low-dose of Bystolic to smooth out the palps. Because my BP has always trended on the low side, my PCP and I decided to not do the beta blocker for fear it would bottom me out. PCP did prescribe a small dose of clonazepam to help with nighttime anxiety that began following this event because I was beside myself not knowing what was going on. All was somewhat well, I was exercising, sleeping well, and life was getting back to normal until I came down with a nasty head cold in March. This (in my opinion) seemed to trigger more nighttime and early morning tachy episodes. I've had seven events this month, sometimes as early as 11pm at night and sometimes as late as 6am in the morning. All have woken me from deep sleep. Instead of going to the ER each time, I've been able to stop the episode by bearing down, breathing, and applying a cold compress to my face. I can get my heart rate back into the 60s within 15-20 minutes - it comes down gradually. At the ER, it stays over 100 bpm for at least four hours. Anyway, finally got into to see an electrophysiologist because my PCP immediately thought of dysautonomia. I'm currently 10 days into a 30-day heart monitor but during the consult, the EP said I had some autonomic dysregulation when it came to BP, but he did not think it was full-blown POTS. We initially tried diltiazem to ease the tachy episodes, but I continued to have them occur even just one hour after taking the med. Just today, he started me on midodrone - 2.5mg upon waking, at noon, and 4pm - based on these orthostatics that were taken while on the diltiazem 30mg three times per day. Laying for 5 minutes - 97/59, HR 72 Sitting for 1 minute - 96/67, HR 90 Sitting for 3 minutes - 99/65, HR 85 Standing for 1 minute - 102/79, HR 102 Standing for 3 minutes - 99/76, HR 98 **I'm only two doses into the midodrone so far and thought things were going well. This morning after taking it, my vitals were 108/71 - HR 78 supine and 113/76 - HR 84 after standing for two minutes. I felt kinda jittery, but seemed to have some energy. Around 2pm - two hours after taking the second dose - I started to feel really shaky and very tired/sleepy. I took vitals again and they were 97/71 - HR 76 supine and 116/82 - HR 80 after two minutes standing. What is going on?! I know this doesn't fit POTS because there's no big jump in HR. And it's not orthostatic hypo, right, because I'm swinging up instead of down when standing. Anyone have a clue what could be going on? I know I don't have a ton of data to go off of, but I'm a bit worried to take the 4pm dose now. This month, I've had some rather nasty headaches and have felt an internal trembling/humming particularly when sitting down. I have been getting shaky after eating too, which is new to me. I do have Hashimoto's which levels were recently checked and all good as well as a dx of fibromyalgia from 15 years ago. Not sure it's really fibro, but that's what we landed on after years of testing. We're waiting on glucose, insulin, AIC lab results as well as a 24-hour metanephrines to rule out pheo, but I'm thinking and feeling like I have extra adrenaline running through my body. Anywho, I'll quit rambling. Sorry for the length and I appreciate any help anyone might throw my way