Maisie87

additional note.. some people have said it's only cause for concern if you feel different or worse when your HR is that low. I do, I just feel weak and lethargic, much more so than normal. Any thoughts?? Thanks so much Maisie

I have had POTS for a couple years now and tachycardia has always been my main problem (as opposed to drop in BP). But for the last 3 days, my heart rate has gotten really low. Down to 43 bpm! I still have the tachycardia when I stand. I know low HR is normal for very active people, but I am the opposite of active. I'm in a wheel chair.. Have any of you heard of or experienced this? I'm afraid to take my sleep aid med. and kind of afraid to go to sleep for fear my HR will drop even more.. Thanks! Maisie

definitely frusterating. I'm sorry you've been dealing with this for 3 years. Where exactly is your pain? Is it dull or sharp? Constant or comes and goes? Does it get worse when you eat? Does going to the bathroom alleviate the pain at all? Can you touch where it hurts or is it more on the inside? I'm not positive but I think there is an alternative to iodine for scans. You might have to power through and get the tests done if you want answers. I had both procedures you mentioned, they aren't that bad. And the endoscopy (thing going down your throat) only last 10 minutes. It's not that bad and I did it without sedation. I hope you find some answers! good luck, feel well Maisie

Elena that's interesting what your doctor said about seizures. My doctors didn't seem very concerned.. and I know what you mean about coming to the forum with your worries instead of your family. It can be a lonely disorder- and I freak out enough, I don't want the people around me freaking out, too! haha. I guess when it comes down to it, I'd probably talk to them if I believed they'd really understand how I'm feeling. But I think only POTSers can do that. Lissy, sometimes those episodes happen to me during the day as well. Not always in the middle of the night, but usually. I also have the same problem when trying to go to sleep. I will start to dose off and slip into sleep and my body will jolt and I'll pop awake and alert, gasping for air, eyes wide open as if someone blew an airhorn in my ear. In order to fall asleep, we have to completely relinquish control of our body and mind. We spend all day mentally monitering (at least I do.. can't help it) our BP/HR/water intake/salt intake/ medications you name it. And then all of the sudden we are supposed to just let it all go and allow our bodies to fend for themselves for 8 hours?? I don't think so.. It's just our bodies' alarm going off from percieved danger of losing control. Protective mechanism.. I just say to my body and mind, "thank you for trying to protect me, but I don't need you right now". This is what helps me. rest and restore Maisie

ramble on glad you found some doctors worth their salt. I also had several doctors say it was all in my head, next family started to believe them and push the psych meds. Good for you for being persistent, and being your own best caregiver. glad you found some answers hope you have an up day today maisie

Elena, YESS I have had this. It happens to me about one or twice a week. I wake up feeling like I don't have a body.. or my heart isn't strong enough to pump and my head is floating but too heavy to lift.. The words don't come out- my muscles have quit- and I feel like nothing is real, or I'm watching a hand that's not mine reach for the water. I'm scared but it's almost as if my body doesn't have the reserves to even panic. Like I[m kicking and screamin on the inside but have no way to show it because my body is completely detached from my mind. It takes me a couple hours to recover enough to go back to sleep, until then, though, I stay awake because I'm to scared to let go and go back to sleep when my body is feeling like this. I've taken my BP and HR during these episodes but the numbers were normal. I don't know what it is or why it happens- I think just another thing POTS throws at you. I know it's hard to think something like that could happen with nothing really wrong other than POTS. When was your last MRI? Well doesn't matter, peace of mind is half the battle. Get another one to rule out anything new, and most importantly, to give you peace of mind. dream sweetly maisie

haha I signed in to post this exact question. I have the same problem (or non-problem) of normal blood volume. My doc prescribed it too... don't understand it. . . any ideas.?

rough time. Thanking you you! positivel energy your way xo Maisie

Thank you all for the support. My ENT appointment was interesting. . I wanted to rule out vertigo or any inner ear problems that might be contributing to my extreme dizziness. After learning that the dizziness began after two severe concussions two years ago (that was the beginning ofPOTS for me- concussions were from a near drowning rafting accident and a car accident 6 wks later), the doctor said it's possible I damaged my inner in the accidents. He gave me a really long word for it.. started with Ph but I don't remember. . He wants to do a CT of my inner ear (didn't know that was possible*) and a few balance tests. Soo we'll see how that goes I guess. As for the Florinef, I didn't respond to it well.. made dizziness worse, really fuzzy thinking with headache and head pressure, nausea. But I've read that licorice root has a lot of the same benefits as Florinef. Any of you tried licorice root? I'm learning that this process is trial and error.. frusterating but necessary. I'm also learning that new symptoms surface weekly. From what I've read on the forum, this is normal.. My blood pressure started doing this strange thing- the gap btw. systolic and diastolic is large, 55+. I notice I'm feeling especially lightheaded when there is a big spread btw. the two numbers. I hope you all have an "up" day today* thanks for listening maisie

my whole family wants the sweatshirts! I'd buy anything with DINET on it, but sweatshirt would be awesome.

ana_22 I have POTS and have experienced dry eyes as well. But I haven't noticed a trend- then again I'm rarely standing. Dry eyes is a known symptom of POTS- just not as primary and dizziness/fatigue/weakness etc.. I don't know the cause, but with POTS new and strange things come up all the time. When I stand, I get hot flashes and flushed, my hands and feet become cold but sweat profusley. I'd check with an eye doctor to rule out any other cause and possibly get some drops to help the symptom, but POTS is more often than not the culprit for these annoying quirks. best of luck* Maisie

will do, thank you

Wow, I woke up this morning to all of your supportive and compassionate messages. I'm pretty new to the forum and so glad I joined. Thank you all, so much for your messages. What a comforting feeling it is to know there are people who understand and support you. Really, a profound thank you. To answer some of your questions.. I had a primary care doctor until I got diagnosed with POTS. (I went to Mayo in MN two months ago and was diagnosed there, they said I've had it for two years). My PCP had never heard of POTS. So I'm searching in Atlanta right now (anyone know of a doctor?). My "plan" right now is mild exercises while laying down, lots of fluids and salt, meditation, and a gluten/dairy free diet. I was recently prescribed Florinef and plan on starting that this weekend.. though must admit, I've had such bad reactions to most medications that I'm really apprehensive about starting new ones. As soon as finances permit, I plan on pursuing acupunture and reflexology. I've been very responsive in the past to alternative therapies. My blood pressure, though on the low side (it's always been lower, even before POTS-no change there) is not my main problem at all. It's the tachycardia. Isn't Florinef mainly to help blood pressure? I'm not sure how I'd benefit from florinef.. I've become jaded and untrusting of doctors over this two year journey to a diagnosis, I'm guessing that sounds familiar to a lot of you. goldicedance asked if I've had a TTT. Yes, Mayo performed it. My BP only dropped about 10 points but my HR jumped from 65 to 120 and remained over 100. More recently though, my heart rate has been about 140 when standing, and around 100-110 when sitting upright. I'm going to an ENT this afternoon just to rule out vertigo. best wishes to all of you Maisie

Thanks so much Maggie, and I'm glad you are improving.

I've had POTS for about two years. Over the past 8 months I've rapidly gotten worse- in February I could jog and go for long walks, now I'm in a wheel chair if not in bed. I'm typically a strong person, but the progression seems backwards. I'm scared. really scared. I'm 22 and am getting worse. Does this make sense to any of you with dysautonomia? Is anyone else bedridden completely? I've started having panic attacks and crying spells- having a really hard time finding a handhold with this illness. Please, any words will help. Anything. Thank you so much. Maisie

thank you both, I'll give the florinef a shot first.

Has anyone been prescribed florinef and sudafed for POTS?? Has either helped symptoms? and I'm not sure I understand the reasoning behind the sudafed.. I tried to call him but he's out of the country until later next week.. thanks!

thank you.

I'm the one that suggested the HH. I had it too, and like the poster above, I had my chiropractor adjust mine and it works great! instant relief. Sometimes it sticks sometimes I have to go in again. Fret not, majority of the time, it's an easy fix and sometimes goes away on its own. good luck! hope you get some relief soon.

deeeeep breath* So sorry you are having such a rough patch right now. The word "hospital" sends a chill through people a lot of times, but think of it as a place where every person in there with a name tag is working together to find answers and make you better. You know that, but sometimes it helps to repeat it to ourselves. I've also been sick almost three years now, balance and walking getting gradually worse. I'm now unable to walk due to weakness and dizziness. I completely understand your fear and frustration! It's hard to "accept" it and just take it "one day at a time" when we feel we are rapidly getting worse. It breeds a sense of urgency and panic, I get it. remember You can only do so much, do your best to dump the burden of solving the puzzle onto the doctors. .. look at that, I ramble too. healing thoughts and prayers headed your way. good luck and please post again after your tests.

makes sense, thanks*

Kind of sounds like a hiatal hernia.. from the way you describe your restricted breathing and swollen upper abdomen. Hiatal hernia is not serious, I don't want to give you something new to worry about, but talk to your doctor about that. Look up symptoms of hiatal hernias and see if it makes since to you. Hiatal hernia is when a portion of your stomach slips up into your chest above your diaphram (hence your trouble breathing). Can be caused by emotional stress/ food allergies like gluten or dairy. Many people have HH's and are asymptomatic or only have symptoms when it's aggravated. .. Good luck! Hope you get to feeling better* Maisie87

No I haven't! Good idea, I'll schedule an appointment. Thanks, and I'll let you know what they say. * Maisie87

Welcome, This could be a weird manifestation of POTS, but sounds an awful lot like vertigo. Google it to learn more. Julie thank you*

thank you*