mkoven

Hi Angela,

I remember that you have chiari. I think that coughing is like a valsalva maneuver that can make chiari symptoms worse. Could that be part of it?

I use a mackenzie cervical roll. Love it.

Our different responses to meds are really interesting. Midodrine helps my cp, as does compression, slat/fluid, florinef. I think my body reacts to a drop in bp by overcosntricting-- but if I have a med that helps it to constrict (midodrine) a bit, then my body doesn't have to go overkill? I frankly have no idea. I also get cp in the middle of the night if I go from upright (to use the bathroom) to supine. I have to lie on my side and gradually let whatever redistribute, and then on to my back. Like too much blood rushing back to my upper body at once freaks my arteries out? Who knows... Knock on wood, the combo of norvasc, midodrine, and florinef seems to have improved things, though it's odd to combine midodrine and norvasc.

My most recent ep thinks that arterial spasms underlie my chest pain. These are potentially dangerous and need to be taken seriously. Chest pain caused by spasms is considered rare, but I bet it's more common in dysaut than realized. thankfully, my arteries are clean. I guess if my blood vessels are hyperreactive, it would make sense that they both dilate and constrict inappropriately. (I didn't think I had official Raynaud's, but last week at the doctor's office, right after I was asked if my hands ever turn blue, and I said no, we looked down, and they were! Like I had ink on them! )

I hate prednisone and its side effects. Florinef feels like a very different beast. I tolerate it quite well.

OMG, yes. What a nightmare. what has helped me (though I've damaged the joint so that it will never be "normal" again)

-si belt (serola). I also have a custom brace I wear on top.

-learn to tell when my si is out, and learn to get it in. Adjustments are pointless from others, as I slip out ALL day long. I have a couple different maneuvers. And they've changed as I've healed. there is no one technique that works for everyone, but you have to make sure that the joint is aligned in the back, and at the front by the pubis.

-try to make sure I stand, sit, walk symmetrically

-stretching and releasing hip flexors, piriformis, quatratus

- strengthening gluts and glut medius.

Good luck!

I had it done both at Cleveland and another time in a doc's office. It didn't really tell us anything we didn't know. I show "sympathetic withdrawal." Their report said I should be on the very meds I'm on. Less painful that TTT.

I don't know if the symptoms are gone or if I no longer notice them, but the only time I notice the effect of midodrine is if I'm late taking it-- I get a headache and lightheaded.

I teach in a university and am often seated. No way I could do it otherwise. I warn students that I will squirm. But to echo others, there are relatively few discipline issues.

I once called to make an appointment and they requested records before even scheduling me, so although you may not need a formal referral, any info from previous doctors-- notes, test results--would probably help. I your current doctor can compose a letter, summarizing everything, I'm sure that wouldn't hurt. And then depending on your coverage when you're in the US, you may need to pay.

I guess the question is still where does this leave you? Does not having eds change anything? I've heard mixed things aobut their diagnosis of eds.

For myself, this is what I've been told. I have a hereditary connective tissue disorder that is atypical. for all intents and purposes, one can call it eds, but a purist might say no. i'm not super bendy, but my tissue tears very easily, whereas others with eds might stretch further before tearing. fortunately, francomano, a real leader in the research, gets the big picture. my tissue is fragile and i have all of the accompanying risks that someone with eds has. so, instead of just "ruling out eds," she validates that there is a problem, and I still need to be monitored and handled with care. but just ruling stuff out, but not explaining, where does that leave you? (BTW, I had a mixed experience at the same clinic in 2003, before we knew about my ans or connective tissue stuff, but that's another story for another day.)

Hi Rene,

If they had to premedicate you, that might explain a lot. Steroids make my heart race terribly. And coming off them is not pretty.

I guess the question is whether this changes your treatment. I was officially diagnosed at Cleveland, on meds. My hr did not hit 120, but did increase about 45bpm.

I think you can teach in private schools without being certified.

Hi Persephone,

How miserable. I'm also limited in what I can take. I was rxed toradol, which worked pretty well. It's a very strong nsaid. You can't take it daily, though, as it's bad for the kidneys. Sadly, I became allergic

the log sounds like a good idea.

for me, the role of head position, and the fact that liquids are harder than solids told us a lot. in people without brainstem compression, but whose swallow nerves are impaired, it's easier to swallow if they put their chin to chest. for me, that totally pinches everything, and i absolutely CANNOT swallow. I have a retroflexed odontoid, so overgrowth of bone on c2 (from too much /hypermobile movement )that compresses my brainstem when my head is flexed forward.

I;m no doctor, but I would guess they are looking at your brainstem and spinal cord. Brainstem is where much of ans originates. I see you have eds-- in particular they may be looking for chiari and related issues which can cause ans problems.

I have intermittent problems swallowing. In my case, it has to do with some brainstem compression. the two docs most knowledgeable about this, my geneticist who has seen a lot of dysautonomia with brainstem issues in eds ordered a swallow study for me. i would definitely let your doc know. i was told that the most important thing is that you not be aspirating. i seem to be able to cough up whatever doesn't go down right, so it's just something we're keeping an eye on. head position really influences it for me. i was advised to use "thick-it" to thicken liquids, as i'm most likely to choke on liquids. i haven't had to use it in a while, but i notice my problems are worse at the end of the day.

I just started with a new cardiologist today whom I basically like. He told me that he doesn't usually see chest pain in dysautonomia patients, which leads him to suspect/confirm vasospasm. I had to really insist that the triggers are autonomic. Sometimes I get lightheaded, but I'm just as likely to get chest pain. I've heard the theory that the pain comes from the fast heartbeat not leaving enough time for the heart to fill, but this happens when my rate is not particularly fast, and is brought on by the usual--standing/being upright. It does seem to correlate with wide postural swings in BP. It literally feels like my chest is being vaccuumed out from underneath.

Thoughts? I don't want to start worrying that something else is going on--esp anything dangerous. I've been tested up the wazoo--clean catheterization, essentially normal echo. The main findings are positive tilt.

I really recommend Claire Francomano in Baltimore. I can't say enough good things.

there's a reason these are called SYNDROMES. there is variation! I went to see Dr. Francomano after getting the run-around from other docs. Her opinion is that I have a genetic connective tissue disorder that is like EDS-- I'm at risk for all and have numerous eds issues. but my tissue has a somewhat different feel--I tear before I stretch. In fact, I'm not that flexible, relatively speaking. Depending on how you count, I have a Beighton of 4 or 5. But my hips are sloshy, subluxy, as are many of my other joints in a way that's way beyond normal. I can sprain something with minimal trauma. The actual people doing the research know how messy the categories are. My skin is stretchy in places and is soft, but not to the extreme. She's happy to call it eds, because that's what it's most like. and at the end of the day, they haven't identified all the mutations. And I've got the cranial instability/chiari/tethered cord which often appears in eds, and may be the underlying reason for some of my dysautonomia symptoms.

if it's a genetic collagen defect, you need to be treated with the same care that anyone with a ctd needs.

the really experienced geneticists can handle grey-- they don't need black and white.

How did they diagnose your problems? XRAY?? MRI?? CT Scans??

mri-- but not all radiologists know how to diagnose. get a copy of your films to take to a knowledgeable nsg.

What kind of exercises do you do in PT to help strengthen your muscles?

a lot of strengthening thoracic spine, so that it is not my neck that is doing the work-- my head just floats on top of my neck, which is held up by my mid-back. So a lot of varieties of the "superman" exercise, using lower traps, not upper traps.

Is the Aspen collar a soft or hard collar?

hard, but padded and adjustable

I have eds and a variety of neck/spine issues that may be influencing ans stuff-- a small chiari, retroflexed odontoid, tethered cord, stenosis. You need the geneticist (Francomano) to order the mris. Since you are in MD, perhaps you could see Dr. Fraser Henderson in Bethesda. He is a neurosurgeon. I don't want surgery at this point, but he "gets" it, as does Francomano. I currently have an aspen vista collar that helps quite a bit. I've also done a lot of pt to work on correcting my "head forward" posture that makes all the head/neck stuff worse. I sleep in the collar, which as also really helped, as I used to wake up with dreadful symptoms. That almost never happens anymore.

I also rarely have a good adventure story to accompany my injuries. I currently wear a neck brace for cervical and cranial instability. Since it's winter, I can wear a scarf to downplay it, but only so far. When people ask (and strangers do all the time), I just say "long story," when they want to know more, I say "chronic condition," if they still want to know more, I explain eds. I think it bothers people to see, so I know the explanation is more for them. Although I wish I didn't have to wear the brace, I feel tons better in it. but yes, I can get injured rolling over in bed.

I have a presumptive diagnosis of variant angina. Really hard to get a diagnosis. finally found a doc who tried out some meds on me that help--norvasc. still get cp from time to time, but less. sadly, now is such a time. it is mostly positional.