Merrill

Just got word ... all's well. I was told contrast was used in patients who've had tumors removed from their spines or in those who've had disk/s removed surgically or who have cancer. They said they don't use contrast for someone like me, who's experiencing pain, numbness, tingling, weakness and blah blah. I don't recall every detail of the prescription--if it was a box she checked that said "use contrast if needed" or if it simply said "use contrast by hook or by crook." In any event, I'll be talking to the doc later this week--as early as Wednesday afternoon, to see what the results are. I'm traveling Wednesday evening for long weekend ... thank goodness for cell phones! Not sure yet whether we'll have laptop and internet access so I can post over the weekend; I know if not, you all will be holding your breath to find out my results. (NOT ... )

take care!

Merrill

Hi, Tea. Thanks for checking in with me! I called the MRI place this morning, and since the films and the written prescription for the test had already been sent to the hospital, they're now waiting for the hospital to fax a copy of that written order back to them.

She took me a little more seriously after I explained to the nurse (or whoever took my call) that my physician had spefically talked to me about the contrast and explained why she said she wanted it.

It's been about 4 hours, so I called the woman back again to see if she'd heard anything; she's still waiting for the fax. When I told her I was about to call my physician to see what she had to say about all this, she asked me to hold off and give her a little more time. So OK; we still wait.

You're a dear for asking ... I trust you're continuing to mend--and that each day you're feeling stronger and stronger. Fever all gone? Nothing like some hefty antibiotics to cure what ails. (Oh, I know we all wish it were that easy overall. But a bug's a bug and you gotta squash the ones that are vulnerable to squashing!)

Take 'er easy,

m

Oh, Geneva, would that it were so! I distinctly remember that the order said "with contrast" -- in fact, my doctor and I even discussed why she felt the contrast was important. It was a couple weeks ago--and I'd forgotten all about it! I know it wasn't my fault--I shouldn't have had to remind the technician of what it said on the prescription ... they definitely blew it. To what extent I'll have to find out. I'm loathe to enter into a therapy program without the doctors having the very best images possible... I guess I just need more information right now--and if I redo the test, it'll be OK with me (but perhaps not OK w/my insurance company!) I will definitely be making some phone calls in the morning! First to the MRI center and then to my physician.

Thanks, tho--it's interesting to hear that your spinal MRIs were done w/out contrast. Maybe it'll all be fine as is...

Take care,

m

OH MY GOSH!!!!!! Emily, I can't believe you just asked about the dye/contrast!!!!!

THEY FORGOT TO GIVE IT TO ME!!!! S$%&!

I FORGOT TO ASK!!!!!!

Now what???????

Growl

I need a xanax...

Em, What's MLM?

I think I tried a tempurpedic pillow years ago ... I slept on it for several nights and then returned it. I hated it! I didn't sleep well with it and it made me feel very very strange. Maybe I didn't give it enough time? I'm glad to hear, though, that (some of) you have found happiness with your different pillows. (My husband isn't happy unless he's hugging one down pillow and resting his head on another!)

Right now, I like my pillows flat and hard, like you, Gayle. I've been using one that's stuffed with cotton and is stitched in such a way to make a firm roll on one side, tapering softly on the other. But it's time to replace it, I think, because the roll part has become flatter and much much less pronounced. But I think I'll wait to get something else until I talk to my future physical therapist.

I was curious about whether PTs recommended flat, soft, down, foam, tempurpedic ... there are sooo many choices out there!

Thanks for your replies,

m

Hi, guys. Well, I made it home safe'n'sound and hungry (hi, Emily ). Actually, when the test ended I thought to myself, "That was a piece of cake. Hmmm... in fact, I'd like to HAVE a piece of cake right now." So we stopped off on the way home at a bakery/cafe and picked up dinner, which I'm eating as I write. (For me, a yummy rotini and artichoke and black bean and fresh spinach & tomato salad with a HUGE piece of chocolate chip mousse cake for dessert that I haven't yet tried... Hope I'm not making you too hungry... but I feel a ramble coming on. Emily, you better go get a bite and finish reading later. And I tried my just-arrived celtic sea salt on top of the salad... Thanks, Opus. Yum! Let me take a quick moment to put in my own sales pitch for http://www.celtic-seasalt.com. It's got all the good stuff in it: sodium, magnesium, potassium, calcium, and more.)

I truly wasn't at all nervous about going downtown for the test, but I had a serious pots spell about a half hour before we needed to leave ... I had been feeling good all morning, then all of a sudden, Wham--I was hit by the exhaustion/weakness truck. Took a salt pill and a bunch of water and laid down ... then was all in a panic to get out of the house on time.

Anyhoo...I felt sooo prepared for the test (thanks, everyone) that it really went just fine. I do so much better (generally, in life) when I know what's going to happen in advance--and there weren't many surprises, except for the long wait to be taken back to the test room. I'll often decide what I'm going to eat in advance of looking at a restaurant menu, even calling ahead to see what's on special. Call me crazy.)

Apparently there are a lot of different kinds of MRI machines out there... At Northwestern Mem Hospital in Chicago, surprisingly they only have closed machines. No open ones with stereo speakers or headphones or aromatherapy or any of that jazz. Just me in a tube with earplugs that don't really work very well!

I did take about a half a xanax before the test ... and then during it, because I couldn't listen to the CDs I brought along, I sang the She-he-khi-yanu prayer/song over and over and over again in my mind. It has such a pretty melody, and it's awfully hypnotic to sing a short song over and again in your mind while envisioning pleasant images. I found myself looking at the words, floating in front of me, and at Jojo (my pet conure) falling alseep in my hand while I scratched her head. The test was remarkably short ... I think they build in extra time in case people have trouble or something. But I was very well behaved. Always am.

I had called the doc in the morning to see if they could just scan my entire spine--especially given the sciatica problems I'd been having. But the doc on call said no. Partly because she wasn't the prescribing doc and partly because it's not protocol to scan the whole spine at once b/c it takes too long and is uncomfortable for the patient. Given my experience, though, I could totally have been fine if they'd just kept going. I'll go back again sometime... and won't be a bit nervous! Hooray!

Here's one other weird thing--Nina, maybe you can relate? When they put that "brace" on either side of my head to hold it still, I felt like my head wasn't on straight and my neck hurt. I had this urge to move it until it was what would feel like straight for me! I guess that shows I'm off kilter ... but then, we knew that going in.

Have I rambled long enough? Are y'all ready for dinner? It's 6:20 where I am, so it's time. Thanks for indulging me if you've read this far... And for all your support and good wishes! They mean the world.

By the way, for those of you who are enjoying teasing me about the drugs, let me just say that taking em at night when you're not nervous or panicky is not a fair test. All that's to say, if you're doing OK and fairly calm, it makes you a little loopy. But I found if you add in the adrenalin that comes with putting on a hospital gown and silly booties and worry that comes with knowing you won't be able to pee for the next 45 minutes even if you want to, the same xanax dose just brings you back to baseline. You don't get to go to the goofy zone. Sigh. Next time, bigger dose! Whoopie!

Take 'er easy,

m

Hi girlydogs... Other than feeling sleepy and a little slow-headed and a bit heavy-limbed (but this is my natural state anyway...my thighs are getting huge these days--what is the DEAL?), I'm having an unexpected side effect: the wicked sciatica episode I'm in the middle of (triggered yesterday by sitting cockeyed in my chair while playing spider and reading posts here) seems to be letting up just a bit! (I had been thinking I'd ask the technician to do my lumbar spine instead... or in addition!) Maybe it's the grapefruit!!! I'm yawning--better hit the hay, as they say. Hope everyone's feeling pretty good tonight ... and that you're looking foward to the weekend! Cheerio,

m

Tonight I thought I'd try 1/2 a xanax instead of 1/4 just for the heckuvit ... this math I can do (.25 mg . . . right?) Swallowed it right down with a glass of grapefruit juice ... ten minutes later I remembered I read on the package insert from the pharmacy (which of course I've misplaced in a pile somewhere but I'm too tired to find it) that you're not supposed to mix xanax with grapefruit! Big Sigh. Well ... I guess I won't worry about it 'cause hey, I just took a xanax!

Nina (or anyone), I understand that a heart rate increase of 30 or more beats per minute during tilt table test is diagnostic for POTS. I've also heard more than one person say that their heart rate dropped during the tilt. What's up with that? And how do they get diagnosed with POTS (as opposed to another form of dysautonomia) if they don't get the T (tachycardia) in POTS?

I'm also curious about what the correlation is between blood pressure and heart rate.

I'm someone whose blood pressure at the doctor's office is always "good" -- on the low side of normal, but basically just fine. And I'm not a fainter. But I AM tachycardic if I'm awake, with heart rate over 100 (sometimes WAY over 100) no matter whether I'm lying, sitting, or standing. (I don't have a bp or hr monitor--I just count my hr using the clock feature on my computer or with a watch w/second hand.) My hr went up 40 bpm in the first minute of tilt and then stayed elevated.

Anyway, curious minds want to know!

Persephone--the stuff you're describing certainly sounds like one form of dysautonomia or another--whether ncs or pots --or maybe you're transitioning from one to the other... The trick now is to figure out what you can do to help yourself feel better--and stop fainting! That must be sooo hard to cope with! Tach in and of itself isn't a bad thing--so try not to worry too much about that part! I would still advise reading the "what helps" pages on this site...

Take care,

m

Wishing you strength and peace in this difficult time, Morgan.

Merrill

Hi--welcome here. Take a deep breath and then a big sigh of relief. You've probably come to the right place ... for support and empathy (because so many here have suffered years and years without correct diagnosis) and information. I have a few questions, of course. Where are you? In the US? Many people here are from other countries--and the kinds of tests, medications etc varies ... even state to state here in the US.

Did you just find us or have you been reading posts for a while? I wish I had time now to search for past threads that would be of interest to you, but you can do a search ... Michelle and Nina are really good at supplying some links so you can read and learn...

I just saw the other posts pop up ... has any physician talked to you about dysautonomia before? Neurocardiogenic syncope sounds a lot like what you describe ...

I hope you get some REAL answers soon and not that psychobabble crap. One suggestion for today if you're not already doing these things: load up on salt, fluids, and star wearing medical compression hose (30-40). These few steps can make a difference (for some more than for others, but it's start).

All the best,

m

Sounds like a big fat ugly flu bug to me, T. I'm so sorry! Quel drag... You probably were more run down and susceptible, given that you've been burning those Chanukah candles from both ends...

I hope your fever has broken by now ... has it? If you're taking an antibiotic, is it safe to presume you did, in fact, call your doctor yesterday? I hope so ... Keep drinking, stay in bed and watch TV, and let everything else go. If you're still feeling poorly tomorrow, I hope you'll put a sign on your front door that says "The Open House is Now Closed."

Please stop beating yourself up for wanting a "normal" life. What's normal anyway? I don't know a soul (with or without a chronic condition) who doesn't overdo it this time of year and suffer the consequences as a result! (I know plenty of sick folks right now. Why can't the holidays be in June--far far away from cold and flu season (in our hemisphere, anyway)?

See if your son can go get you some matzoh ball soup. That'll perk you up from the inside out. OK?

Next year: Pot luck.

Take care.

m

Geneva, my MRI is Saturday afternoon--thanks for asking. (At the moment I'm more worried about the treatment afterward than about the test!) Funny thing--I can't exactly tell if I'm actually feeling a little loopier and relaxed or if I'm just pretending because I know I took something! I know that's goofy ... I even drank caffeinated tea at dinner just to get me "going" a bit ... Plus my hubby's been at his company xmas party, so I tried to worry about the fact that he wasn't home and unreachable on cell phone the way I usually do ... but it just didn't faze me too much! I'll try 1/2 pill tomorrow night, though I risk not getting any presents wrapped and in the mail if I get too complacent! I am WAY off topic now! Sorry, Em.

G'night, all.

m

Emily, you're such a dear dear person ... Your posts are never downers (even if you think they are) ... and even if they were, we're all here to boost you up. Thanks for writing tonight--I know it took a lot for you to get on here and check with us all ... and reading the paragraph synopsis of what's been going on w/all of us was quite moving, really. We are indeed a family of sorts--and it's gratifying in a way I never expected or imagined. I've also been unable lately to fully keep up or respond to everyone's posts in the way I've wanted to...and it's frustrating. Things have taken a turn toward the extremely busy at work, and daytime posting may be a thing of the past. And other life stuff comes into play in the evening, so time only for a quick check-in. It's hard--you feel like you're ignoring some important people and issues... I guess I'll take this moment to say to everyone that you too are in my heart and on my mind--even when I don't respond to a query or post for help or advice. Sometimes I just don't know what I can offer... I'm rambling now--I took an experimental 1/4 of a .5 mg xanax tonight as a pre-MRI experiment and I'm feeling fairly relaxed--so much so that I haven't even the interest in doing the math on that dosage!

I hope you and Asher both have a quiet night tonight ... and that you did, in fact, make it through some piles over the last few days. I hear mine calling now...

Take care,

Merrill

Right behind ya, girlfriend.

Why aren't you supposed to wear lotion with compression hose? (Who advised you of this? It's a caution/suggestion I haven't heard...)

m

For those of you who are being treated for cervical spine problems/disc herniations or degenerations, what kind of pillow did your doctor or physical therapist recommend you sleep on at night?

curiously yours,

merrill

Corina, how'd your test go? Thinking of you--and hope you made it through OK & with good results.

m

Thanks for sharing such wonderful news, Opus. I can't imagine being ripped so suddenly from my home--and for so long. I love your optimistic spirit and your positive spin on what could have felt more like disaster. You're a champ, you know that? I'm happy you're home!

Your friend in a cold cold hurricane-free zone,

Merrill

Wow. That's a lot ... I read a bit, mostly from the 2nd group. I guess at this point I feel like an actual diagnosis would help me absorb more from the first batch. Please correct me if I'm wrong about this--I didn't read each piece in depth--but it seems as if ANS symptoms (e.g. some of the things associated with pots) are concurrent but not necessarily causes or effects of cervical spine trouble. (Did I say that in a way that makes sense?) That is, it's a chicken/egg situation--and unclear which condition is a precurser. Just that for some people, both conditions are manifest.

At any rate, thanks so much, Nina, for providing all those URLs! I'll be referring back to them as the information rolls in. Staggers?

Best,

Merrill

Julie, Nina, this may be a question for you ... but I thought I'd post for everyone both because more folks may have articles stashed away and also because it seems like several others at least will be interested in the results!

Anyway ... I'd like to read an article (or several) about the connection between the autonomic nervous system and the cervical spine.

Whadaya got?

Thanks,

merrill

Amy--did you say that about the xanax b/c your mom didn't like it? or because you know she (or you) felt better when you or she tried Atavan?

I suppose it's a moot point now, though! I filled the scrip for xanax at lunch ... I'll try 1/2 dose (.25 mg) sometime in the next couple days--probably in the evening--and see how I feel. If I'm more anxious, then forget it. I'll survive the test by sheer will; it definitely helps to know what to expect!

While I was out I also bought myself a little prezzie. Two, really. A lavendar scented eye pillow (the heavy kind w/beads inside) and a lighter weight eye covering ... I'll try em both, maybe return one. (My brother calls me a bulemic shopper since I'm constantly buying and returning things... )

Mazel Tov! (And doesn't that vacation sound nice! I've very jealous!) Enjoy...

best,

m

Ernie -- just saw your post ... I want to join the others in expressing some sadness over what sounds like a difficult afternoon ... but I also want to join in their praise and good wishes ... You did it! Yes, you needed to awaken someone from their sleepwalking (people do just sort of drift in this crazy shopping season, as if blinded to the realities around them) ... I too hope you found something fun and festive to wear--and that when you do put on something new, you'll put on a new you as well and don't think about the circumstances in the dressing room!

Hey, here's a poem for you. (I just reminded myself of it ... I love it--this poem has obviously become a part of me!)

Purchase

I like the smell of new clothes,

The novel aroma of challenge.

This dress has no past

Linked with regretful memories

To taint it,

Only a future as hopeful

As my own.

I can say of an old garment

Laid away in a trunk:

"This lace I wore on that day when. . . ."

But I prefer the new scent

Of a garment unworn,

Untainted like the new self

That I become

When I first wear it.

by Naomi Long Madgett

Katherine, thanks! Did they let you bring a walkman in--for an MRI of the head or neck/cervical spine? (or were they x-raying something else?

It would be fantastic if I could bring my cd/walkman or an mp3 player w/headphones. Did anyone else do that during a cervical spine mri?

thanks,

m