NMPotsie

When I stand up after sitting for awhile I get dizzy and then get a pressure in my ears and my hearing gets weird; I can hear everything, but it's like it's far away or the volume has suddenly been turned down. It seems to subside after the dizziness does (seconds, or longer depending on symptoms). Anyone else get this? Any ideas what might cause it?

That's great, CJ. At least she didn't say "oh yeah, lemme hook you up." My mom is German and her translations into English aren't always so good. When I was acting cheeky in high school she asked me, in front of all my friends, "Are you on the pot?" I was endlessly tormented about that. People would say "I called but you didn't answer; guess you were on the pot."

Also, be careful with home bp monitors. They are supposed to be accurate (I was assured multiple times by the pharmacist that they all have to be within certain tolerances) but the issue is that with many of the cheaper ones if you don't get them positioned just right you can end up with faulty readings. I took many of them to my doctor's office and found that they were WAY off if they weren't on just right (I also have fairly defined arm muscles and they were tight on the top but loose under my bicep). I ended up purchasing a $100 model from Omron (later, saw it at Sam's for $60..whatya gonna do? LOL) with a sensor that tells you if the cuff is not on properly, and a cuff that fits multiple arm sizes. Every reading I've taken with it in my doc's office is dead on what he is getting. All doctors I have asked have told me to avoid the wrist monitors, as well.

medhelp.org also has dysautonomia and bp trackers that are free and easy to use. I just print them out and take them to the doctor; the dysauto tracker helps me identify which symptoms are coming up frequently, as the brain fog/beta blocker combo often leaves me unable to recite any but the most recent symptoms. Before I used them, I didn't realize that when I am most weak is when my bp is lowest (maybe this is common sense to everyone else, but I didn't put the pieces together). Now I know when I'm weak and tired I need more salt, and when my head hurts I need less because my bp is higher. They've been a blessing for me in filling in the blanks.

Mayo gave me a cheap and easy exercise plan using those resistance bands you can buy anywhere and an exercise ball. My balance is terrible now, so the ball is nearly impossible, but I can use the bands sitting or lying down when I don't feel good enough to stand up. I'm also a big fan of the rower! It exercises both your legs and core, which really helps with the pooling.

I'm not an md, to be clear, but I am a Communication Studies professor and public speaking coach and people in my field recommend beta blockers for occassional use to those with physical manifestations of anxiety in public speaking situations specifically because they control the shaking, sweating, etc. They do nothing for the mental status of the speaker, though. Not sure that's helpful, but wanted to mention it. I took asthma meds prn for the sob that accompanied my bb; they threw me into one of the worst hyperadrenergic surges I've ever had, and I was in bed for days. No good for me, and the sob subsided after I acclimated to the bb.

I had several runs of 6 or so beat vtachs on the plethora of ecgs, holters and long-term event monitors I've been on. It feels like a bird is fluttering in my chest when I have any odd heartbeats, but I reported dizziness with the vtach and not with the other ones (svts). I also felt the need to cough, according to my diary (I didn't know what was going on). My heart is fine, structurally, and none of the doctors seem to be worried about them because everything else is strong from a cardio standpoint. They called it idiopathic and said not to worry (like the previous poster). I also have svt and multiple episodes of sustained brady and tachy, even when upright, so my doctors assume it's an autonomic issue. I only had these while driving/riding in the car, oddly enough, and I have been on enough LT event monitors to be pretty clear that they are just sporadic. If it were me, I would get at least one long-term monitor to be sure. The propranolol has helped smooth all of my rhythms out, but I still have them, and the brady has increased.

I bring my bp monitor with me because I experience episodic hypotension and hypertension. It has a memory, and I can go through it with the doctor so he can see it. My problem is that I'm hypo a lot of times, but hyper on standing, and going out and to the doctor requires standing up that raises my bp so it is always high at the doc. This way he can see what's going on.

I took my hr at home, sitting around with the pulseox and then stood up. It went from 60 to 136 regularly, and I repeated it several times. My doc tried to do a poor-mans tilt, but of course I wasn't super symptomatic (it was cold in there and he didn't do it long enough). I ended up videotaping the pulseox so he could see what happens with my cell phone. I took it in and he was like "oh yeah, you're right, that's weird". I was still nervous that I wouldn't be symptomatic on tilt and be sent home with one more xanax script for my anxiety, but my pulse difference was more than 80 at 10 minutes, so my symptoms definitely came through on tilt (took awhile, though; more than 2 minutes before it went from 56-99 and then 135). I think it's important to make sure they keep you on tilt long enough; not everyone responds right away, and I don't if it's cold. Also, like everyone said, it may not be POTS but still dysautonomia. Lots of stuff can cause vasovagal syncope.

I say heart problem; that explains most of the symptoms. I have found that when I go to the ER and tell the triage nurse I have a heart problem I don't have to wait behind people with broken legs, back pain, etc. I usually get right in!

Not sure if this is funny or just sad but I had a blood draw this week and I warned the nice lady, who had been doing the job a long, long time, that I'm hypovolemnic, hypotensive (at times), and have POTS. She just nodded, so I thought she understood. After drawing 11 vials, she told me to leave and that I would be fine, so I did. I made it to the waiting room and passed out cold. When I woke up the staff acted really weird when taking my vitals. They were tsking me about drugs, and I was confused (I didn't take my beta blocker because it was a fasting test). It turned out that when I passed out she told them I was ON pot (ie marijuana). They thought I was baked at the blood draw!

I use the chart issie is referring to, and add journal entries when something particularly noteworthy happens. I also use their bp tracker, which will pull your cardio symptoms from the dysauto tracker automatically. It's easy to print and carry to doctor's appointments.

I'd like to hear more about your swallowing difficulties, if you learn anything. I've had that feeling of swallowing around something for 15 years. My doctors are only now actively pursuing a diagnosis; I'm supposed to get an upper GI, eosonophil stain, and barium swallow as soon as my most recent bout of staph in my throat/tonsils subsides (2nd one in 2 months). I have tried to find info about the swallowing thing but no one seems to have any. If they tell you anything about it, please share. Sorry you're having so many problems. I hope you find the answers you need; not knowing what's wrong is half the terror of this illness for me.

Mine is also mid-low 50s, though I always have several incidences of 40s on my Holter monitors, especially at night. When it's in the 30s at night I wake up coughing, trying to speed it up. I go from 55 supine to 135 standing on tilt. With the beta blockers my resting is same but standing is only 90s.

I don't know enough about it to give a definitive answer, but I was told that because dysautonomia is so unpredictable it's not safe to assume that because you did not react poorly last time you will be okay for the next. I have had fillings that were not an issue, and then I suddenly had a very bad reaction to lidocaine that was just out of the blue. What I did was to provide the article above to the doctor and then discuss my specific issues with him because we are all so different. I have high adrenaline levels, so in my case it was important to avoid epinephrine and carefully monitor the bp both during and after procedures. I haven't had to have surgery, but an oral surgeon will be educated in the effects of anesthea and, while perhaps not experienced with POTS, will understand patients who have heart problems (and thus cannot tolerate novacaine or its ilk). There are plenty of alternatives. I would try and stay awake if it were me; if they're not impacted, many people get them done with a local and are fine. If they are, then I would talk to the doc.

Good job! I use an exercise ball in place of my chair for 10 or 15 minutes at a time throughout the day. It helps work those abs and keep the blood squeezed out of your feet. I also keep a foot stool so I can raise my feet when on the phone or other activities that don't require facing forward. Do get up and walk around as much as possible, but also try to get your feet above your heart (or at least flat) for a few minutes at a time to restore blood flow to your brain. When I lay down a few minutes at lunch (ie in your car with feet on dash and seat back) it really helps the afternoon brain fog stay away.

I get a daily headache in the afternoon that starts at the top of my head on the left side and moves down into my eyeball and into my neck in the back, like a really tight hat is applied to my head on the left. Had an MRI but it was clear so I was told to deal with it as it's part of POTS. About the time the pain gets bad enough to take something it subsides and leaves behind random, shooting pains and very dry eyes. Weird. When my bp shoots up from an adrenaline surge my head hurts so bad all I can do is hold it and cry, and it lasts for days. The only thing that helps the daily ones is a heating pad on my head/eye. I know it's weird as heat bothers us, but this is the one case where it actually helps me. I keep an icepack on my chest or I get too hot and dizzy.

When I close my eyes in the shower or to wash my face, I totally lose balance and bump into the walls and am very dizzy. I cannot close my eyes unless I am laying down or I will literally fall over, so closing my eyes would be first on that list.

There is an article about dental treatment for POTS patients here: http://www.cfids-cab.org/rc/Brooks.pdf My doctor told me to avoid anesthesia as much as humanly possible, and if necessary to tell the doctors to make sure and carefully monitor bp and heartrate, avoid epinephrine (I was also told to avoid lidocaine, but not everyone is), and have the treatment in a location that makes it easy to get to a hospital should I have problems. Additionally, I was told to carefully salt and fluid load in the days before and days after a procedure, and to avoid issues that would require my meds being held for long (so, easy on the painkillers in my case because they worsen my bradycardia w/the beta blockers but if I can't take the propranolol I am a tachy mess). It seems like the big issues were the epinephrine and making sure my doctors are fully aware of potential complications so that they are paying careful attention.

Every once in awhile I get a similar issue: horrible dizziness and a ridiculous nausea that sticks around for about 2 hours after I doze off. Mine doesn't come and go like yours, but it wakes me up and keeps me that way for a couple of hours. I also experience pounding heart, but not tachy; just my heart beating so hard it makes my teeth knock together. I'm sorry to say I have no idea what causes it, but I find that chamomile tea with honey helps, as well as Zofran. My doctor has suggested GERD because it happens when I lay down, but I see you already have that diagnosis so you've probably covered that ground. It doesn't seem to coincide with a flare for me; it's just random in my case.

Okay, I guess the world IS spinning. Put me down for brain fog.

Chronic infections, and taking forever to heal from anything. I'm with some of you....the dizziness is "normal" now, and I only notice when I'm not dizzy. Taking 3 weeks to rebound from a cold, though, is the worst, and I've been on antibiotics for the better part of 3 years for infection after infection. Second would be heat intolerance for me, as well, mostly because my insistence on running the air conditioner and driving with my head out the window in the snow makes my husband completely miserable. I was a championship water skier and went through college on a diving scholarship; I can't even go outside in the sun now without shaking and feeling like the world is spinning.

I was on it about 15 years ago.

There's a great prescription deodorant I use for this. It's called Hypercare. You can use it on hands, feet, underarms,etc. I even dab it on my forehead, though I'm not sure that's regulation. My insurance covers it. It stings a bit at first but you get used to it, and after the first week you only have to use it once a week or less. I only use it about once a month at this point, and it's all I use. I used to sweat through my clothes. My doc suggested Botox as well, but it's expensive and you have to repeat it pretty often. It's also painful.

Again, thank you, that's very helpful. I will look at the website and Dr. Rundel's info. I didn't have that particular test that you describe, so I'll bring it up. Yes, I run low fevers but my body temp runs low normally (96.8-97.5) so when I have a fever the doctors don't treat it as such because it will be 98.8 or 99 which they don't see as "high." With the kidney infection it was 104.3, so that was clearly a fever. I can tell I have symptoms of fever, though, at the lower number. When I get a virus I get very high fevers like 103+; I'll even spike a fever with allergies at times.