Lainy

Thank you for the replies and info @Pistol I have a cardiologist that isn't interested in further testing or medication, but that was before I started having issues with dizziness and passing out. I have a follow up planned with my PCP next week and the ER did suggest asking about a neurologist, so that's definitely something I'll push. I will try wearing my compression hose for a few days and see if it helps in the meantime. I feel like I'm already overloaded on salt, but everyone keeps telling me more, more, more - so I'll try and boost that. Do you usually have more issues with vertigo and syncope in the afternoon/evening? I'm usually just fine in the mornings, it's weird.

I had just finished cooking dinner for my family and sat to eat, about half way through eating I felt intensely dizzy and then passed out right on the table. Family says they couldn't wake me for several minutes. They insisted on taking me to the ER because it scared them but I honestly was strangely calm, didn't feel worried or panicked. Kind of detached, actually. I have been struggling with headaches and vertigo for over a week that start about noon and gradually get worse through the evening but that was the first time I had even come close to passing out. I haven't been able to tie the headaches and vertigo to anything. In the ER they ran every test they could think of, including chest xray, EKG, head CT, blood panel, etc but everything came back perfectly clear except for showing I was a little dehydrated. (despite my mandatory 3+ liters a day) I've had no mediation or dietary changes, either. Does this sound familiar to anyone? Any ideas of how to ease the dizziness and prevent any more episodes where I pass out? I was very lucky to be sitting when it happened this time.

@Pistol & @bombsh3ll Thank you for the encouragement! That's something I might have to do if I can't see more improvement on my own. He's my second cardiologist and the doctor that diagnosed me so I was really hoping I could just stick with him. Oh well. My PCP recommended adding in magnesium when I feel that extreme fatigue. Has anyone else heard of magnesium helping?

Are there links to videos/images that we can share with family and friends that explain dysautonomia in laymen terms? I feel like most people's eyes will glaze over and they'll keep scrolling if I get too technical.

I had a pretty discouraging visit with my cardiologist this past week where I asked all these questions and he brushed me off. I couldn't even get to the question about licorice so I'm tempted to just try it anyway and see if it helps. 😕

I've been limping through a ton of joint pain for the past couple months and finally got in to see my PCP about it. We ruled out anything rheumatological or inflammatory and now we're looking at the possibility of fibromyalgia or a connective tissue disorder to explain the pain. For those with either, what is your experience? How did you get diagnosed? How did your doctor know which one to pursue? What's helped you most?

I'm being treated for tachy and am on a very low, steady dose of beta blockers. But for the past couple days I've been having episodes of extreme sleepiness, heaviness/pain in my chest and trouble thinking so I checked my HR and it was below 50 after having just done a flight of stairs. (normal for me after that is 130+) They last a couple hours and if I can get myself up and moving to raise my HR I start to feel better. It's definitely a strange feeling being at the other end when my life has been all tachycardia for the past 2 years. Are swings like that common for people with dysautonomia?

Thank you all so much for your answers. I was tested for aldosterone and the lab showed <1 but my Dr didn't mention it as an issue. Maybe just something he overlooked since all my other blood lab results were normal? For those that take licorice, what does it do to help you? Is it safe for someone with hypertension?

What tests did you have done to determine if blood volume is an issue? Is testing for Aldosterone levels one of them? Which of your symptoms were eased by treating low blood volume?

I might actually have a theory as to why I feel better at high altitude: In the mountains there’s less oxygen due to the altitude and the human body compensates for this by increasing it’s production of red blood cells to better supply the body with needed oxygen. I feel better at high altitude because it forces my body to increase it’s blood volume, thus eliminating my symptoms related to untreated hypovolemia. I've been suspecting low blood volume for some time now so it's interesting that this is pointing to the same thing. Has anyone else experienced something like this? Does this sound plausible to you?

I just got back from a camping trip up around 8,000 ft and I already want to go back. I feel so much more like my old self at altitude and as soon as I'm back home, I'm reminded of all my symptoms. In the mountains for 3 days, I went on 3 hikes, one of them pretty steep and intensive. I was constantly moving and doing things and had more of an ability to focus without all that brain fog. I could spend energy, rest and regenerate it and keep up with my family. Home now? I barely made it through the grocery store and was down for the rest of the day.

I completely understand how scary this is. I've been struggling with POTS symptoms since I was 16 and recently diagnosed(now 28) And just like you, have always been very underweight. My lowest BMI was 14.4 just earlier this year and unless it's something you've gone through yourself, I think it's hard for others to understand just how frightening it is to feel like your body is melting away before your eyes. My cardiologist advised me to try and put on 15-20lbs and load up on the high-calorie junk food. (advice he said he would never give any of his other patients) He thinks putting on weight would help 'slow down' my body and its metabolism. Easier said than done though. But I'm slowly making progress- if I can gain and maintain weight then it's not impossible = P My appetite comes and goes and I try to take advantage of it when it's high. Something that's really helped me is actually avoiding large meals, and having 6 smaller meals plus snacks through the day. It's easier on my body and I can get more calories in my day that way. You can also do something like Carnation breakfast shakes or Pediasure in between or on low appetite days. And my personal favorite is anything potato - you can really load on the salt which is another bonus for POTSies. I know it's frustrating and scary and hard not to give up when you step on that scale and see another 10lbs disappear but it's worth it to fight for it. I've gained 15lbs and I'm definitely seeing improvement in my symptoms and feeling stronger.

I live in Colorado and frequently go into the mountains (mostly long drives up into Rocky Mountain National Park) sometimes as high as 12,000 ft. I'm pretty acclimatized to it but going that high: you may want to double your salt and water intake and be extra careful about overexertion. Otherwise for me, I feel better up there. Might just be because it's so lovely and being in nature recharges me. I go up at least twice a month as long as the roads are open.

I'm the same way. I really crave salt and I will straight up eat it (even before dr told me to get more in my diet lol) I like the pink himalayan salt best and then I follow it with a bottle of water.

I'm totally okay with high fat/calorie foods, actually. Part of my recovery plan is gaining 15-25lbs since my cardiologist classified me as 'cachectic'/severely underweight. I'm with you on the stomach sensitivity so I'm trying to get what I need through food and drinks. I'm just not sure I'm getting enough. One of my favorites is V8 that I add extra salt to. (not great for the weight gain goal but it helps my energy level) Thanks for that list, I never thought to go after lists that are for others to avoid!

I've been advised to increase my salt intake and over the past couple months I've definitely added more to my diet but my doctors don't quite seem comfortable telling me just how much I should be getting. Have your doctors ever given you a number to work towards or is it a guessing game? Also - what are your favorite salt sources?

That's pretty accurate for what it feels like for me. I've been tempted to wear a brace on bad days to prevent that back-an-forth wobble(which is even worse when I can hyperextend) to avert any injury while I'm overexerted and recovering. I have instability in my hip and ankle, too but maybe supporting the one joint that's most likely to buckle will help... I have several braces, so there's no excuse not to try it.

Thank you both for your replies - It's always a comfort to know I'm not alone. I don't have any meds for nausea(partly because most knock me out) but I will ask my Dr next time we meet up and maybe start with some lukewarm tea next time. Maybe she'll have an idea about some PT for my left leg, too. It gets a little dangerous wobbling around like that.

Does anyone else struggle with nausea when you're overexerted? That's been the main thing I struggle with lately which makes recovery hard when I don't feel like I can keep down food, water, or the extra salt I need. Another symptom for me is instability in my left leg. I feel like it's going to buckle on me and almost feels like I'm dragging it behind me because it's not moving/responding like usual... But it's only ever a problem in my left leg when I'm overexerted? Anyone have ideas for the cause on that one? I'm baffled.

I work from home and the people I live with have full time jobs, so I'm home alone daily for long stretches of time. I totally understand your anxiety. Something that always helps ease mine is planning. Like mentioned above, some days getting up is hard(dizziness and fatigue for me) but I find it helps to eat and get some water before I move, but by the time I'm awake everyone else in the house is gone already - I plan for this by keeping snacks, water, and an extra dose of my beta blocker right next to my bed so I can take all three before I even get up. I also plan all my errands for the weekend/days that other people have off so that I never have to brave the store alone. It's always been the hardest for me to make it through the grocery store and with how prone I am to dizzy spells and nearly fainting in the isles, it's just not wise for me to try it solo. I have bad day back ups for easy food, extra days planned into my work deadlines, and emergency 'kits' all over the house. (water, salt, meds) so that I'm never far from them when there's not people around to help. If I'm having a flare(really bad stretch of days/weeks) I have people that will call me on their work breaks to check in and make sure I'm okay and that helps ease the anxiety, too.

I got this SO often after full meals, or anything carb or fat-heavy. I didn't know what to call them so I refer to them as "Carb-attacks" because it feels like a heart attack. After I was first diagnosed, I learned this was tied to POTS(like Pistol described) and that was such a huge light bulb moment for me. It happens way less often for me now (used to be after every meal) I'm on metoprolol and I take my evening dose before dinner(my largest meal) and it really helps. Other things like mentioned above, don't eat big carb heavy meals. I do best with 4-5 small meals through the day with lots of snacking. I feel like I'm constantly eating lol but I've gone from having these carb-attacks 3 times a day to maybe once a month.

When mine was spiked that high, I was actually already in the ER for something else. I almost broke my foot and I was there for x-rays. They nearly refused to treat my foot at all because my BP was so high. I wasn't on any medication for it at the time (pre dx) and mine really spikes when I'm in pain so there was at least a little reason for that one. They sent me home without treating my crisis-level BP and said to find a different cardiologist for a second opinion because "any doc that thinks that's normal is nuts" I think it's great advice to consult your primary before going to the ER(especially if you don't have full coverage) But if they are taking too long to get back to you, or you have any chest pain - GO! Better safe than sorry!

I topped out at 196/132 and have chest pain, tachycardia, nosebleeds, tremors, and severe headaches during BP spikes. I'm super prone to headaches, but yes, post-high headaches can last for a few days for me. As well as over-all exhaustion. I don't take anything as needed for spikes (that's not something my cardiologist has mentioned as an issue yet) we're still trying to find a beta-blocker that works.

ks42... that actually makes lot of sense. Do you feel like that's something more common for HyperPots? As an experiment, I dialed back on my morning walks a few days ago and I'm sleeping better again! I have a habit of moving forward too quickly, I suppose. I'm only just able to do any 'vertical cardio' (was restricted to recumbent after a concussion) I'll just have to take it slower. I've never heard of adrenal yoga. I'll have to look that up and give it a try.

I take 6.25mg metoprolol twice a day. (super small dose since I'm hypersensitive) I've worked hard these past few months to establish a good routine/sleep hygiene so it's just confusing(and frustrating) that it's been very unhelpful for the past 2 weeks. Bunny, I actually use a lot of those Small heat source(heating pad on a timer) and mind dump have been the most useful. And earplugs since any little noise will wake me up. Some other things I do: -Set hours for work. I run my own business from home so the home & work life bleed together. I try to 'Clock out' and have at least 3 hours in the evening where I'm relaxing & not thinking about anything work-related. -light stretching before bed -lower all the lights about an hour before bed -no TV or computer 30 minutes before bed(often the hardest for me) -keep pencil and paper near my bed in case I have ideas so I'm not running them over and over as I try to fall asleep. -keeping my sleeping space clean (clean room, fresh sheets, making the bed) there's just something super satisfying about fresh linens so I do it as often as I can to encourage myself to actually get IN the bed. Has anyone found that being able to be more physically active has thrown off their sleep? I do all my exercise and rehab in the morning so I didn't think it would impact sleep at all?