mkoven

I had a geneticist diagnose me. Locally she coordinates eds care. The testing is really only for type 4. the other types are a clinical diagnosis. I also saw MArk Lavallee in Indiana, an eds specialist. he's actually in sports medicine. for eds, since it affects many systems, it often means different specialists. i see a local sports medicine doc for my joint issues. Many docs know little about it and only recognize extreme versions. I'mn not as hyperflexible as some, but my joints are all unstable, my skin somewhat hyperextensible, and slightly bluish eyes. ednf.org is a great resource. pots is a frequent topic there as well.

I first felt like fainting four years ago at age 35 after a long, hard run. It happened several times that week with no apparent trigger. Afterwards, I would sometimes feel like fainting right before my period. But overall, very intermittent and not really a problem.

Finally this spring, I started having recurrent near-fainting episodes. Initially, just before my period. Now, it's all the time. There are days when I feel like I spend most of my time trying to avoid fainting. Definitely worse, though, premenstrually. Peeing and standing are also triggers. My allergies also make it worse. I was on prednisone this summer and the ncs was much worse as I came off it. And since I've got a bad back and can't sit for long, I've had days where sitting was agony, but standing perilous. My choice: killer sciatica or passing out.

Don't know where this is headed. Stockings and salty beverages help. I've started tilt training (got doc's approval) and it helps some. I'm up to 8 minutes. I'd love to make it to 15. I haven't yet started meds.

I was diagnosed with EDS 18 mos ago, so that's probably the mechanism. My sloppy joints also only started making mischief about 5 years ago. Before I just thought I was a wimp--easily worn out, sore, injured. I just thought I had bad luck with more joint injuries than typical for someone my age...

That's terrific news!!! Congratulations!!!

Michele

It sounds wonderful, Persephone. I really find academic work relatively accommodating of my symptoms, as the schedule is relatively flexible. Plus, I don't know about you, but I love letting my brain focus on non-illness problems. Enjoy!

My main problem with caffeine is that it dehydrates me, so I have to be sure to drink extra tomato juice.

Hi Tessa,

I'm sorry to hear about your frustrating er trip. I hate it when they decide it must be "anxiety" because they simply don't know.

Do you wear compression stockings? They help me a lot. I usually feel better immediately.

From what I understand IGG testing for food allergies is controversial and most allergists don't buy it. IGE testing is what most allergists go by. Of course if a particular food makes you feel bad, there are different types of intolerances. For example, I'm lactose intolerant, but not allergic.

So today I tried to go out for a short walk for the first time since 10/30--when I ended up in the hospital with shortness of breath. I went for about 10 minutes, and no shortness of breath! I wonder if the tilt training has helped...

Also, I just bought a walker with wheels and a fold down seat. I feel a little funny using it, as I think of myself as too young, but it helped physically and mentally. Physically-- a little support for balance and sore joints. Mentally, as it helped to know that I could take a break and sit if and when I needed to. I hope that the walker will help me to feel braver about going out. It's a little unwieldy, but hopefully worth it.

And just getting outside helps. I have terrible pms and nausea right now, but the weather is beautiful here (sunny and crisp), and I want to enjoy a little bit of sunshine.

It may be premature to draw conclusions, but I've been trying some very low-level tilt training. I started at 1 minute (yes, that's right), and am now up to 7 minutes of standing while still feeling okay. I have to admit, since doing this (the past 10 days), I've been feeling less awful when upright throughout the day. I see my doc on Monday and will discuss. I am adding no more than 30 seconds at a time, and sometimes do several days at the same length. A major limiting factor is my poor joints-- with eds my knees, hips, and pelvis get cranky, and feel better if I'm moving. It may be that I never progress beyond 10 minutes, but that's already a lot better than wanting to pass out and vomit after 30 seconds. But heck, I'll take better, no matter what the cause.

Some major stress in my life has just let up significantly--I work at a university and my tenure case made it through the first hoop. It's been a very long haul and there are still more hoops, but I'm encouraged. I'm about to turn 40. Overall I really want to manage stress better, and feel like I"m working WITH my cranky body not against it. For the first time in a long time, I'm in a place where I can start deciding what I WANT to do not just what I HAVE to do, and I would like to feel good about the choices I make.

In terms of salt, I think if you're blood pressure isn't high, and you don't have congestive heart failure, salt isn't bad for you. I've been adding lots of salt to my food, drinking lots of tomato juice that already has salt, drinking chicken broth that's salty, etc. My blood pressure is rarely higher than normal and usually very low, so I've been told this is safe. I tell my friends that I'm the only woman I know who is trying to RETAIN water and bloat on purpose!

I do notice that if I'm even a little dehydrated or overheated, my symptoms are a lot worse. the only problem with all the fluid and salt is that I have to pee constantly! (And annoyingly, I frequently come close to fainting while peeing--sorry for the detail...)

It's so frustrating not to feel heard at the doctor's office. I agree that you should be seen by someone with knowledge of POTS.

If they have done the standard tests to rule out heart damage, and those tests are normal, that is still a very good thing. Even though I'm very frustrated by the mysteriousness of my symptoms, I certainly don't want to be told that I've had a heart attack, have blocked arteries, or bad valves. I'm still looking for good treatment, but it is still very good to know that my symptoms are not life threatening.

I don't know how things work where you are, but here, if you want to see a specialist, and it is urgent, you can often do so by going through the ER. In fact, that's the ONLY way to get certain things down quickly. I have learned this the hard way-- if I wait to call the doc's office, and they send me for tests and to a specialist it can take months here too. But, if you show up at the er,and say you have CHEST PAIN, and all the symptoms you describe, at least where I live, they would keep you overnight, and get you a consultation with a specialist as an inpatient.

Late October, like you, I was having chest pain, lightheadedness, and shortness of breath while walking. Because it was on exertion, they were concerned it was a blocked artery in my heart, so they kept me until they could get a stress test done. Same thing in May, I had one-sided weakness, and they kept me to rule out stroke, I was seen by a neurologist the next day and had an immediate cat scan, MRI and MRA.

Given that your symptoms could be many things, even if it is POTS, no American hospital would let you go home.

One caveat, it's only been in the last year that they've been keeping me. It could be that now that I"m older (39?), they're less confident I'm just a young, neurotic woman. The fact that I also have eds makes them nervous too.

Before I started having symptoms, my resting heart rate was in the low 60s, and when I'd exercise it would be around 120. (With my joints, I couldn't go harder.)

What's weird is that now my resting heart rate is upper 80s at the lowest and often upper 90s, but when I'm exercising (recumbent bike) it still only goes up to 120. And 100 on the bike feels like some effort, even though 100 lying down just makes me feel like my heart is "spinning its wheels" -- but 100 on the bike feels like it serves a purpose. So I'm baffled...

I have a job that has flexible hours and lets me change positions. I teach at the college level, so the only time I have to be upright is when I'm in front of students. I do a lot of computer work, and just have to keep moving. I recently got a fancy, comfy recliner for my office which I use when I'm reading, grading, meeting with students, or just not feeling horizontal. I also use a scooter if I have to go more than 5 minutes on foot. Right now I have ADA status which means that I'm entitled to "reasonable accommodations."

My thinking was that it's easier for my body to keep the blood flowing while seated, but not while standing-- just as I can sit much longer than I can stand...btw, I had a dobutamine stress test, as I can't run/walk fast with my bad joints, so I was actually lying down throughout it.

Can anyone explain the mechanism that causes me to get short of breath when standing or walking? I can ride the stationary bike without getting winded, but on my feet for more than ten seconds, and I can't catch my breath. I've had a stress test-- no problem. I may have some asthma, but can't tell if my windedness is asthma or pots?? It's really annoying and disruptive. I'm about to start lexapro-- had anyone found that that helps sob?

Thanks!

Michele

Yes, and it's hard to tell what's ncs and what's my out-of-control allergies. My allergist says I have chronic urticaria, dermatographism, and agioedema. H initially said my faintness was anaphylaxis. Now iot seems there's ncs, and it's hard to sort out what's what. I'm on a lot of anithistamines-- zyrtec and allegra 2x a day, singulair, and benadryl as needed. I was on prednisone over the summer. I would live to see a doctor who can figure out the relationships between my itching and ncs.

Even now we can't tell if my shortness of breath is ncs or asthma.

Thanks, Nina. The main problem seems to be that doctors are so specialized that they don't necessarily connect the dots. Allergists don't deal with ncs, and cardiologists don't deal with allergic reactions. And I rarely seem to have problems that fit neatly within one specialty.

I'm getting to the point where I think I'll have to start meds for ncs. It's just too disruptive. I guess my first step is the lexapro. I'm nervous agout florinef, as I already have dead bone in my ankle that's quite painful, and just have been on steroids too often-- though I've heard it's somewhat different from, say, prednisone.

I also think I'm wearing out my compression stockings already after a little over a month. I felt really bad yesterday and noticed the stockings are easier now to put on and take off. I guess that's easy enough to remedy.

Hi everyone. I seem to have a weird combo of bad allergies and ncs and I don't know if or how the two are related. Frequently when I get that pre-fainting feeling I also get very itchy--esp my throat, mouth, and face. In fact initially, my doc here thought I was having idiopathic anaphylaxis.

An allergist in Chicago thought that the fainting was not anaphylaxis, as my allergies didn't seem severe enough. She chalked it up to anxiety (hmmmm).

But an electrophysiologist thought I definitely had ncs, and that the faintness is from that... so maybe my threshold for passing out from an allergic reaction is a lot lower than non-pots allergy people?

Now that I've been diagnosed with NCS and bad allergies, it seems odd how they co-occur. Does that happen to anyone else, that you get very itchy right when you might faint? It almost seems like my body releases mast cells when it feels the faint coming on...

It's also true that the ncs and my allergies both got really bad at the same time-- and sometimes cooccur and sometimes not.

My serum tryptase was normal, so they don't think it's mastocytosis.

Tho I had some issues before, everything revved up this summer when work got super crazy. I'm going up for tenure in my job, and I had several major fainty meltdowns right after I had to turn in files representing eight years worth of work-- to be judged by anonymously by a panel of experts. The bummer is that things are calmed now at work, but I'm still left with these weird symptoms. So anxiety can worsen it, but it had a life of its own.

I've had several bouts of vertigo. the best medication I had was low-dose valium (2mgs). It calms down the vestibular system. I can't tolerate meclizine. I tried pt for it, which involved moving my neck to the side and back several times a day. Unfortunately, since I have eds and neck issues, all this did was give me headaches, neck, and arm pain. IT did finally subside. If it is truly positional vertigo, it's usually a question of time for the little dislodged inner-ear crystals to settle into place. In all, my last bout lasted about four months.

I've also had my fainting sensation misdiagnosed as vertigo.

Which type of compression stockings do people prefer? I've now tried several types of Jobst. The 30-40 help , but i find that they fray at the crotch seems really fast for something so expensive. I also have always hated stockings-- they're such a pain to pull up-- esp for someone who uses the bathroom constantly. I think I like the open toed, as my feet get sweaty, but there are fewer models with opn toed. i;ve tried the knee-highs, but they don't really do it--it's the waist highs that help-- but I just feel so confined. (And with the eds, I have ankle, knee, and pelvic braces on top of the stockings. oy.) Has anyone tried compression levels higher than 30-40?

Hi,

I'm somewhat new to the forum and to the experience of always feeling like I'm fighting a faint. I have yet to go on meds, but find some relief from compression stockings , salt, and liquids. I am very sensitive to meds, so I'm trying to delay that as long as possible

I am still trying to keep up my routine of working fulltime, and am trying to understand what to do when I feel a faint coming on. I'm trying all the countermaneuvers. it feels like they help postpone the faint, but I will still feel for a couple hours like I'm delaying the inevitable. My body is hellbent on passing out. I'm not always in a situation where I can lie down and put my feet up.

I seem worst at the start of the day-- the shower (I do sit), and even going to the bathroom (sorry for the graphic detail, but peeing and defecating both make me feel like I'm gonna black out).

It's also bad at the end of the day if I've been sitting a lot at the computer.

So I guess I never know when to tell myself the urge to faint has passed enough that I can carry on. The other day I felt like I was going to faint while reading (seated), but I had to then walk three blocks to a pilates lesson. I contemplated cancelling, but hoped that if I kept moving I'd be okay. the urge kept coming and going. I asked my teacher to keep me on my back, but even at the end on my back, I thought I was gonna faint.

So sorry for the ramble-- but can you really make the faintness stop with the countermaneuvers, and at what point can you then resume what you were doing?

I have also turned to alternative treatments for various conditions over the years when regular doctors are at a loss to help. If you are going to try supplements, I would try one at a time, so that you'll know what you're reacting or responding to. I also have many allergies, and can't introduce multiple things at once.

I might also try something like acupuncture before taking pills. At least that would stimulate YOUR body to make whatever changes, rather than taking a substance.

And I'm always wary of people who claim they can fix me. I'm very wary of people who make claims like this, as much as I want to believe they have the answer.

I'm very wary of chiropractors, as I have eds. No adjustment will really hold and may stretch me out further. I've occasionally gone when my ribs were out.

I just had the dobutamine stress echo-- all normal. that's a relief. So i think they're guessing asthma and ncs?