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cordellia
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hello all---

this morning i went for a TTT in boston. the director of the lab is a bully---a deeply unpleasant individual... he was so rude during my last visit--that a contrite visiting fellow crept into the examining room and attempted to apologize for the head honcho's heinous behavior... i vowed never to go back--and yet here i was--- two years later---strapped to the tilt table...alas you know the drill...

was shocked to see and feel that i was consistently hypertensive for much of the TTT. no tachy but CONSISTENT hypertension... normally (for the past six years) i run low with a some break through hypertension. BP varies--but generally speaking HYPO rules. last summer had four tilt training sessions and never really broke 100/60... dipped to 60's/ 40's... during those summer sessions was bradycardic for the most part. this time around-- BP's 170's / 60's... i am not on any BP meds--never have been. so there is nothing new in the mix that would account for this change.

trying to piece together what might be different... for the past few months have been experiencing a new type of head pain; different than the usual dull pressure that is often present in the back of my skull, ln september i suddenly lost vision in my right eye, pupil dilated and would not contract ... off to the ER... clean MRI--vision restored one day later. ER doc sent me home without a Dx and a neuro referral.

today after the TTT--asked about what could account for this change from hypo to hypertension--was told that there would be a followup in may 2011--unless anything

"looked serious"... and then i would be contacted. i was sent on my way--too weak to argue the point. my husband is out of town so i was solo today.

hypotensive--to--hypertensive... wondering if this is a familiar scenario to anyone out there. bought a new BP monitor this evening... thinking perhaps it was all white coat hypertension...BP still elevated. sorry to drone on... feeling bad---head throbbing and BP rising. last few weeks have been very challenging... and i am having difficulty making sense of this new development... and wondering if it means anything at all.

waiting for appt with PCP...

healthful wishes to all,

cordelia

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Cordelia, I have no information or advice, but I feel your frustration. I just had testing in Boston, and my TTT was drastically different from the one I had locally a few weeks beforehand, with the number a lot less dramatic. I was nervous the doctor, whom I haven't yet met, would say I'm fine when there's obviously something wrong (see my Looks Like a Duck thread). Anyway, they told me my follow-up was in May unless something was abnormal. However, they said it was likely I'd get in earlier no matter what the tests said, just more quickly if they weren't right. I guess the doctor doesn't have a consistent schedule, so patients get put on a list. When he's around and can see patients, the office starts calling to see who can come in. The May slot is just to hold our places in the system, they said.

I hope you get some answers soon. They told me I wouldn't know anything for about two weeks, which will be this Friday. It's hard to be patient!

-Autumn

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Sorry you have a hard time with this doctor. Thus far I seem to be one of the lucky few with him. Are you on Midodrine at all? I'm not sure why you'd be switching from hypo to hyper. Some of the meds can cause that though. I'm sure the stress of the situation didn't help either. Take care.

Elizabeth

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thank you autumn and thank you elizabeth...

so appreciate your support and feedback.

autumn-- yes, i know that feeling ... my BP readings were so high yesterday... i kept thinking--

they are definitely going to label me as a hypochondriac. elizabeth-- i am not on BP meds--no midodrie--

currently taking: armour thyroid: TSH is 1.89 so no thryroid issues; multi vitamin; vitamin D; B12... no meds that would normally effect

the blood pressure...

wishing you both wellness and providers that are intelligent, patient and caring...

best from boston,

cordelia

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Cordelia - let me guess, were you @ beth israel?

If so I can commiserate with you on how horrible the drs are there in the autonomic department and quite full of themselves!

I won't be back...

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Cordelia-

I hate to alarm you, but did your docs do an echocardiogram & ultrasound of your carotid artery after your blindness episode? I ask because that's a classic sign of a blood clot, broken piece of plaque etc. Sometimes our hearts can begin throwing clots if various valves begin to wear out. Or, your carotid artery could begin to thicken with plaque which can break off. All potentially dangerous.

A friend of mine had the same symptom & it ended up being aortic stenosis. She's actually having her aorta replaced in a few weeks. I am dealing with something similar at the moment. I think I had a blood clot in my finger this weekend-it briefly turned black again- I'm going through lots of tests right now to figure out WHY. My doc is convinced that I have cryoglobulinamia as it only happens in cold weather.

Lots of these hypercoagulable disorders can CAUSE a rise in BP. You need to get back to your primary care doctor & demand more testing. Blindness in your eye & a rise in BP is a very serious symptom. At the very least your hypertension needs treatment. A headache from high BP is a sign that you need treatment NOW. In the meantime, take an aspirin (if you can tolerate them) and sip some green tea to further thin your blood.

I truly don't mean to alarm you, but your doctors are missing something.

Big (empathetic) Hugs-

Julie

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thank you--thank you all-- your comments and good counsel are so appreciated...

it is heartening to know that there are others on this path--who understand...

merci julie! in the midst of your own challenges you reached out and i so appreciate the kindness and caring.

i took your advice: just returned from ER -- my PCP actually insisted that i be seen...CAT scan clean--blood work unremarkable--

neuro exam: nothing noteworthy. doctor was initially convinced that i was having a stroke. once CAT was read

i was dismissed.

i pushed for answers regarding the sudden onset of the hypertension, corresponding headaches; weakness;

the recent temporary loss of vision. was told to follow up with PCP. will do so tomorrow. i live in my body--something

is not right. hoping that my PCP is willing to work with me to find real answers. hoping that we all find real answers.

with healthful wishes to all...

cordelia

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Just want to add I'm sorry about having to deal with that mean doc....wish someone would report him to the medical board in hopes he'd be on a performance review for a bit - likely fail it and have to leave - oh my how awful would that be....grrrr....

I have met two similar lately ... it almost could be on a sitcom the ego's I've run into... First you see their faces plastered all over town in advertising and on TV. Then you go to their office and they themselves have their faces plastered on the walls of the waiting room. They begin with, 'well the ONLY reason I'm seeing you is....' Like they are some freakin' gift to the universe & I'm to grovel in Thanksgiving? They tend to BELLOW instead of talk. They are easily easily threatened by questioning. They have barbie-doll nurses in heels and enough make-up to black top a playground two times over. Click, click, click oh no here she comes again.... The staff are 'trained' to speak as if the doctor is the world's only answer to your problem. Yet if any one of them had the malady themselves and were treated in such rudeness they'd run screaming. Ah yes.... They are coast to coast I'm afraid LOL & I'm sorry you endured this not once - but twice. I've got to love the occasional sympathetic resident who is made to endure this day in and day out during his rotation following the dude like a puppy...they speak with quiet desperation as they get your story before the 'big wig' comes through the door ~ hoping they "get it right". My last one shoveled around for a marker for the doc to draw me a picture - the doc already had his own pen and shoves the residents hand aside saying, "my pen is fine!" --- Heaven help us.

Sorry about the high b/p -- maybe your catecholamines rise with standing? I don't really know. I'm having a baseline of high with shifts each way. 153/112 to 79/51 all in 24 hours. They say I'm to drink 100 oz. of water a day - I used to have a coffee or two and a diet coke a day. It's so challenging -- but why so high I don't know. I'm on catapres and bystolic and catapres will likely be increased to twice a day soon. I was low till 10 years ago -- in a high stress environment - gained weight and have been labile ever since. But my baseline without meds is definitely high now.

Hang in there -- hope your primary and everyone you see treats you well and with kindness and good, good care to help you feel better soon and normalize your b/p...

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dear dear nowwhat!

laughter is a gift... and i laughed aloud for the first time in days... thank you for your comedic take on a rather bleak situation. was interested to read about your BP morphing. hoping that you find a workable treatment that addresses this... i appreciate your sharing your experiences and history...

once, i was a straightforward individual--prided myself on my ability to communicate well and succinctly... illness has silenced me and made me fearful.

on capitol hill i advocated for people like my present self and i was quite good at making things happen. today, i am ruled by fear--often mute in the face of unreasonable medical providers (the legions of ego driven department chairs/heads or knowing fellows that actually know nothing) fairly certain that everyone here has a tale to tell in this sad vein... i am culpable... and allow myself to be mistreated. i think that the threat of being without care undoes me... there is also the fear of being branded as a problem patient... and of closing off other avenues --or access to providers that might see my history and RUN...

my husband is from a medical family (not an ANS specialist among them) and i am often privy to tales from the other side... there are patients that live in a microcosmos and fail to understand that physicians inhabit a larger world populated by legions of very sick people... my brother in law (a fellow at the time) was living with us

he was/is a gifted doctor--open and accessible, bright and focused. i watched and listened as patients pushed past boundaries, accosted him in social situations, downloaded their ailments and woes without regard for the fact that he had a host of other patients and commitments. i marveled that he was always kind and gentle... thoughtful and above all--caring. i would often chide him... how do you put up with all of it... of course i was not ill back then and spoke from ignorance... never imagining the desperation that illness can create.

thank you again to all...

blessings in your paths...

cordelia

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thank you--thank you all-- your comments and good counsel are so appreciated...

it is heartening to know that there are others on this path--who understand...

merci julie! in the midst of your own challenges you reached out and i so appreciate the kindness and caring.

i took your advice: just returned from ER -- my PCP actually insisted that i be seen...CAT scan clean--blood work unremarkable--

neuro exam: nothing noteworthy. doctor was initially convinced that i was having a stroke. once CAT was read

i was dismissed.

i pushed for answers regarding the sudden onset of the hypertension, corresponding headaches; weakness;

the recent temporary loss of vision. was told to follow up with PCP. will do so tomorrow. i live in my body--something

is not right. hoping that my PCP is willing to work with me to find real answers. hoping that we all find real answers.

with healthful wishes to all...

cordelia

Hi Cordelia-

You need an echocardiogram of your heart (20mins) & an ultrasound of your carotid artery (5 mins.) Are you feeling more tired than usual, any unusual shortness of breath? Sometimes this comes on so sowly that you aren't even aware of a difference. Your temporary blindness is your warning & the subsequent high BP a reminder not to let up until you have answers.

I spent the whole day at the hospital today with my friend, who had a cardiac catheterization in preparation for her aortic replacement. He husband is working out of state. Her only symptom was ONE episode of temporary blindness (in one eye) and a little shortness of breath. PUSH for these two tests.

Good for you for following through & advocating for yourself. I am so proud of you- hard to do when you're scare & not feeling good. Keep pushing until the two tests above are completed. If they are normal- fabulous- rest assured that it may have been simple eye fatigue. BUT with your current symptomology, you need to be certain.

Keep us posted-

BIG HUGS-

Julie

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good morning julie,

'

re: the cath--so hope that all went well yesterday for your friend...

peace and well wishes,

cordelia

Hi Cordelia-

I don't want to hijack your thread, but the cath went fine- tiny complication with the incision. Looks like she's going to have to replace her aorta & aortic valve :( Aside from a tiny bit of shortness of breathe and her one episode of temporary blindness- NO SYMPTOMS. See why I'm pushing you to have the tests :rolleyes: By the time an impaired valve starts tossing blood clots, it gets pretty serious. I just want you to be safe. Keep us posted on what you learn.

Hugs-

Julie

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julie good evening---

i am listening and heeding---this a cautionary tale...

cardio's NP was impatient and somewhat annoyed when i requested the echo and ultra sound. will see if i can cajole the new neuro...

once again--thank you for your concern and invaluable counsel. your goodness is evident-- even on the page. your friend is fortunate to have you by her side.

closing with healing thoughts and well wishes...

cordelia

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Hi Cordelia - Don't know if this will help, but I too experienced both highs and lows. In the beginning, I was always low. About five years in, I started to go high. Cardio believes I have the hyperadrengenic form of POTS and my understanding is that high and low bp is a hallmark of that. If I'm out and about, I can go either way. During my tilts, my bp skyrocketed the last time where before it had plummeted. When I'm out and start feeling shaky and get that horrible pressure and whooshing in my head, I know my bp has either shot up or gone way down - I never know until I check. It's frustrating because I can't really take meds for it. The meds for the high bp will drop it too low during the low times and vice versa.

Good luck on finding an answer. I hope you can rule out that something more serious has made your symptoms change. For me, it was just the way my POTS progressed I suppose....

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hello daisy,

VERY much appreciate your insights. the pressure/whooshing/weakness... i know these signs/symptoms well--and like you, i cannot tell if i am hypo/hypertensive...

either way the symptoms are challenging. meeting with cardio in ten days. will push for the testing that julie suggested. do you know what tests/markers determine

the hyper-A form of POTS? many thanks !

with healthful wishes,

cordelia

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Hi

My bp varies a lot too. I make med adjustments and then whoops I am too far in the other direction. So now I just try to ride it out and rest when it is too low or two high. It is very tricky especially if you are taking beta blockers (lower bp) and florinef or midodrine (raise bp) and then add in a screwed up nervous system as well.

When I was at BI the dr was not involved with my TT - a researcher conducted the test. But maybe that is because it was ordered by a different dr from a different hospital. But I have had plenty of clueless drs in my life.

Would any of the Boston area folks ever want to meet for a little support group? I have often wished there was one....

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hello lina--merci for the feedback. support group is a marvelous idea; unfortunately, i am never in boston long enough to participate in much of anything.

(with the exception of medical appointments) thank you again for offering your insights. with healthful wishes, cordelia

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