RunningWild

I know we have talked about Ear problems recently- but this is a huge problem for me right now. The midodrine im taking helps with most of the blackouts, but i still get a few random episodes. Lately I have been having a feeling of clogged up ears. This happens mostly when im up and active... and ALWAYS happens when im exercising. It feels like all the blood is rushing to my head and filling up my ears. I get very dizzy and disoriented, and have passed out while exercising. I don't know if this is related to the POTS at all, and I don't know what to make of it. I also get frequent ringing, buzzing, and just constant aches in my ears.

I never knew what this was... I thought i just had weird eyes. And they have gotten much worse as my POTS gets worse. weird.

Really glad you finally got some answers!!

It's weird that you say "your daily headache" because I thought I was weird for having an awful headache every day. I wake up each morning with a headache, and I go to sleep at night with a headache. I'm still waiting to talk to my drs about this, because its becoming quite bothersome.

I'm sorry that you have this to worry about, on top of your own health. I don't have any experience with SSI, so I know I'm not of much help, but I just want to wish you the best. I hope the approval comes through quickly.

I live in PA, but I am originally from Cleveland, and my family still lives there- so I already have a place to stay. hehe. I'm very nervous about the testing- but as I've said in the past- I'm mostly concerned that they say nothing is wrong with me.

Oh this is the one in Cleveland.

Angela- I think I am seeing Dr. Fouad, but I may just be seeing someone in the same department? The lady that did my scheduling said it would probably span a few days, with the QSART and office visit on the first day.

Anyone know what I should expect? I have heard mixed reviews, but its the closest place that has some sort of knowledge of POTS. Any info would be appreciated.

Thank you for all the responses. Hopefully this is something I can discuss if/when I get an appointment with Cleveland Clinic.

Does anyone have poor circulation, and think it's at all related to POTS? I frequently get the pins and needles feelings in my hands and feet, and sometimes experience total numbness, but what happened to me last night was very odd and scary. So I was helping my boyfriend work on his headlights last night, and we were outside for maybe 20 minutes. We then went to the grocery store and I noticed that my fingers were white, and felt "dead". We got home, and it hadn't changed, so my boyfriend started freaking out. We put my fingers under warm water, and the color slowly came back to my fingers, and the rest of the fingers turned black. I don't think this was frostbite at all, but it was very weird. The fingers feel fine today.

I agree with lieze- i think he is considering that idea- but also sending you for more tests to figure something out. Don't fret hun. Not all doctors think we're crazy hugss!

I was going to post a thread similar to this a while ago- but i didnt want to come off like a downer. haha I really miss the way I used to be able to go non-stop for the holiday season....cooking Thanksgiving, Black Friday shopping at 4AM, christmas shopping all december, xmas, new years- all of it. I could do anything i wanted! But lately im so drained. I cant shop for very long without having to pull my boyfriend out of the stores due to blacking out or just getting overly exhausted. I can't even stand to be chatty with family or just hang out. Ugh I'm coming off like a downer anyway.

I started noticing my problems when exercising. Mostly because I was an avid runner, and suddenly began feeling faint during/after all of my runs. My EP told me that he never wants me to exercise alone, and to make sure my gym has a AED nearby... Now, I sometimes feel okay when I run. Its not nearly as fast, and I can only manage for around 30 minutes... but really I think its all about feeling around for your capacity. If you start feeling like crap, slow down or stop. And always take baby steps when starting something new. I still get my HR to like 200bpm when I jog. I don't feel like this is normal (despite my EP okaying it), but I am very concerned about staying 'fit'. Also- I always feel totally worn out after exercise... I hope this lessens as i increase my fitness level a bit.

When I first went to my PCP, I thought that my shortness of breath, fainting, and exercise intolerance was possibly related to a congenital heart defect that had gone unmonitored for 6 years. I'm wondering if anyone else has heart defects, and if their POTS symptoms could be related to problems from those. I was told after multiple cardiac tests that my heart is structurally sound (um, how can it be, if i have holes and narrowed valves, leaky valves, etc)- but I'm wondering if this would be worth a second opinion... I have pulmonary stenosis, tricuspid regurgitation, and a PFO with atrial septal aneurysm. I have heard that mitral valve prolapse is common among many POTSies, but wasn't sure if it extended to other heart defects.

I've felt some of the same things since starting midodrine- but i dont have a BP cuff to check my BP. But yeah, the nervous/weird energy after taking the pill, but no reduction in the dizziness, shakes, pre-syncope, and fatigue. ugh and the headaches are so much worse.

I think about this a lot, because I am only 22 and wanting to have children someday. I guess Dani said it best where if we choose to have children, we will have to prepare for the worst (and hope for the best), but I think that's how I go about living on a daily basis. haha.

Anyone have them? I'm wondering how much these can contribute to, or cause, POTS. I know they make poor circulation in legs even worse- but I wonder if they could be the main problem?

Julie- that is very strange, and I'm sorry nobody has been able to give you any answers yet. I hear Mayo is wonderful, though, so maybe that will be your saving grace!

I think I'm just -weirded out- by my POTS dx, because I don't know what could have possibly triggered it. And I'd hate to keep worrying and researching and freaking out and go to another Dr, just for them to tell me its wrong, or its something else. Or it's nothing. sigh.

Ah I get it. So while you can be diagnosed with POTS, its really more of a catch-all :/ That's frustrating.

I've read a few things on various websites, but do a lot of people experience the diagnosis being wrong? Like, were any of you diagnosed with POTS to be told that it was actually something different? And if so, what was the other diagnosis? Or maybe it was the other way around? I know the diagnostic criteria for POTS are pretty solid with the heart rate increase, but could that be caused by a myriad of things?

So sorry you are experiencing this, but it truly seems like you are in wonderful hands. I don't have any experience with Mayo, but I think the more tests they are able to run for you, the best idea they will get of what's going on. Wishing you the very best during your stay.

That's so strange, because your onset is very similar to mine. Especially the ferritin/anemia situation. My ferritin level was a 5, but I was just barely anemic. They raised all those values, but my PCP said that no way even anemia would cause such an abnormal spike in heartrate like I was having. I was frustrated that my cardiologist thought the frequent tachycardia was okay for someone young and active like me, but I guess he never really understood that I wasn't doing much to cause the spikes. I mean, I was running 5 miles a day easy, and now I can barely walk at 3.3mph without wanting to die. And not all days are bad. Somedays I can run a little. But this isn't NORMAL. I did not become out of shape overnight. My insurance company approved the Cleveland Clinic appointment, so I'm waiting for a confirmation. Does anyone know if they will redo tests or just take into consideration the previous ones?

I don't think I need my BP to increase, so i don't know how much the midodrine will do for me in terms of making things better. my avg BP is like 110/70. Right now my thoughts are racing about the visit to the Cleveland Clinic. I know a lot of people have posted about it, so I will look for more info about what the visit would include- but I'm also afraid my insurance wont cover it, and my BF and I can't afford non-covered visits. sigh. I'm sure it stinks this much or more for a lot of us here, so i won't be all 'woe is me'... woe is us