i wonder if any of yo u experience passing outtt, or nearly so?
I have orthostatic hypotension(OH), but i felt different and was siiting
when it happened. I usuallly feel pooling in my legs and havee bg.p. drops when I stand.
yestterday i have just aboout colapased. I was feee ling a litle 'off' all day, more diizy, if that is possible!
I feelt my heart was palpatating . and knew i had to hit hte floorr.
i do have low b.p., but am on med to helpt hat. I was wondering if i got dehydrated, butI can ususlay tell if i am by bowel movement, so don't thin k so.But I am not
sure if it had dropped(this felt differnt somehow) or if my arythmia was the issue. My docotrs had me had a bigwork-up sometime ago, (unsistained VT and a couple runs only showed on m y holter )and I really didn't wna to have to call before apppts in a few weeks.
Any ideas and input I would appreciate, thanks amo
Sounds like you are having a time of it. I wish I could help, but want to stress that you should really see your cardiologist. My daughter has the neurocardiogenetic syncope, and that is my only experience. Lying flat when you feel it is pretty much all you can do. Make sure you are well hydrated, like you said, and keep your calories/carbs balanced throughout the day.
You have a few other things that were identified, i.e., the arythmia, your on bp meds, etc., lease call them and tell them that you need to get in to see the Dr right away because you've have some additional things going on since your last visit. Tell them you don't feel comfortable waiting a couple weeks.
So just pushing you to make the call Amo, it stinks to have to, but think it's important for you..... you can do it.
sometimes we do kneed someon tell us LOL
we do not havae a cardiologist in town , full time, the visit rotate in two weeks, but soon we will. Not sure when thier next week in. But it is a good idea to call them, i will.
I just don't know if ms will c ause others to do this either. My dx is unclear yet again. THey talk and yap then change their minds
may I ask whatt your daughter cause of her neurocardiogenetic synco e Is? ( does she have pots?))
thanks agaiin. take care, amo
I hope it is treatead and she is doing ok.
I wish things were different in your town, so you didn't have to wait so long. Glad to hear that you will make the call.
I am not sure if MS can cause this, as you know many symptoms are so similiar at times, and then others there is no comparision. There are so many variations, and we are all a little different to some degree, if even slight. Crazy disease.
As for the syncope. Sure, I'll eplain the best I can. I do not know the cause. What I do know is in someone who does NOT have it, your blood pressure typically goes up when you stand, and other activities. It does this to get blood to the brain. Our brains do not store blood, so this response is good, and keeps us from passing out, dizzy, etc.
Those with neurocardiogentic syncope, the bp goes down. It is an improper response, basically. Lying down, with your feet slightly raised will resolve it. As long as there aren't too many contributing factors (dehydration, lack of food, etc) it will resolve pretty quickly. It can happen in a variety of settings, but if you learn the warning signs it is easier to manage.
The danger lies in the lack of warning signs and when your not able to mitigate it. It can drop you very quickly, you can get hurt, etc. For example, you should not be on balconies with out bannisters if you carry this diagnosis. Pools, without someone around, etc. She's was banged up pretty bad the last time, and I had all I could take w/the typical ER, Dr follow up routine. Took her to the top Electrophysiologist I could find in my area. He was wonderful.
My daughters dx is managed by increasing her salt intake, drinking plenty of water, and keeping her calories balanced. I do not let her go long w/out popping something in her mouth. She was undiagnosed for a long time, so I treated it as a sugar problem. So, the transition was not hard, as I was doing a lot of the same things.
She does very well, she loves to dance, she cheers (actually a flyer), and doesn't let it affect her at all, she's very naturally athletic.
I hope my daughter's story helps you, and that yours is something manageable as well. If there is anything you want more info on ref this, please let me know. . ..
I know somebody who's had damage to the brainstem, and ended up with neurocardio-whatsis syncope. When she's feeling bad, all she can do is stay on the couch - any sudden movements will cause her to faint.
My sister, who has MS, and I both have trouble with this and have to watch out for this. She and I have both been to a cardiologist. The cause for me, was unknown at the time. My sister had a lots of tests, including the tilt table test, and they found that she had vasovagal response. My sister says that it's related to her MS--she explained, but I'm not smart enought to repeat back how this works. She does have most of her lesions in the brainstem area. Her blood pressure usually is low. Mine, however, is usually high. My lesion load it not centered in the brainstem area.
MS may effect the autonomic system. I wish I could read this article and explain it because I think it correlates autonomic dysnfunction with chronic disease like MS:
But I don't understand it. Maybe someone else could help out????
When I had vertigo back on 12/24/07, one of the things the PA suggested was that I had low bp due to a change in position. Sometimes I do get a bit light-headed, but this vertigo was completely different.
He had the nurse take my bp while lying down (118/70), and then sitting up (110/72). He said I was kind of close, that there had to be a 10 point spread on the top numbers, and I only had 8.
Frankly, I was still in a tizzy because he suggested that due to my hyperreflexes, I ought to be seen by a neuro to rule out MS.....
So I wasn't really comprehending all of this stuff being tossed at me.
Any insights on this 10 point spread business? Sounds like a football analogy.
it is difficult weeding theroguh this all.
Sl, gladd to hea ryour dh controls her episodes . I bet she has fun with her athletics. I must be hard when she is with her peeprs.
I am on florinef, not suure my benifits are worth the side effects, but will talk with docs when i seehim.
jen,, yes lucky laying down will resolve the fluctation. hope youur friend is doing ok.
deb, interesting. My b.p. runs low so i have meds ot try to keep it up.
Thhanks afor the link, i wil read thorugh it as i can. I had been dx'd with msa-c, which would be part of this all. But then when i 'don;t fit' completely therre either they just say cerebellar ataxia now...hum.
But my brainstemm does hhave abnormall signals(besides leasion) in my mri.
my tilt table was 'inconclusive'...i couldn;t stand long enough . I wished they would have used the injection anyways.
suzanne, i am not sure what drops need to happen with that.
I still use my b.p. cuff occationally, but did not get too it this time. I am not sure if this was b.p. or arrythmia. In past i have gotten readinngs dropwell over 30.
I know that normally thee b.p. response should be fast enough to no be able get a differential reading.
I had read a few good dysautonmia pages in the past. If iii can find one to see what it says an dlet you know.
how are your cold hands been?
I stopped the nifedipine when the Rx ran out. I could have gotten a refill but I didn't want to pay the $65. for 90 pills. I hated the reaction they gave me (clay head on a stick as I called it, as well as facial flushing).
We haven't had a lot of snow lately, so I haven't had to be out in the cold to feel any pain. And I get my kids to put away/take out freezer foods.
Hoping you are doing better, thank you for asking about me, that was thoughtful of you!
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