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Not An Almost Not Again!


cardiactec
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Well this morning I almost passed out again....I was able to go supine before an actual total blackout....

.....I have had presyncopal events many times before and it has felt very very different from what occurred this morning and when I actually did pass out a couple weeks ago.....Before these two events all i felt for prodrome was nausea, weak, tremor, a little light-headed........these two events are very different in that they manifested by a very sudden sensation in my chest of my heart rate plummeting out. this is how i now distinguish between just "feeling" pre-syncopal and not actually passing out with an actual imminent impending blackout. I wonder what is up with all this!!!!!

so frustrated and ill feeling right now.............

a very upset,

Cardiactec.

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hey mom4cem,

thanks for your concern/care.......

i saw my PCP last week........this situation is a little complicated in that my doc (neuro) put me on .3 mg/day florinef about two months ago for "presyncopal spells" but not actually ever passing out.........while bieng on florinef, the prodrome has been much for instantaneous, instead of gradual -- though once again, not actually ever passing out.........my neuro didnt like the sound of such an instant feeling of blackout, instead of more gradual effect as it was before going on florinef..............so a couple weeks ago, he told me to slowly titrate off the florinef from .3 to .2 and then wait 5 days and go down to .1 and then wait 5 days and just go off of it...........i waited 5 days on .2mg a few weeks ago, on the fifth day i was going to cut it to .1mg and on that day i passed out............which then my cardio told me to go back up to .3 of the florinef and my neuro said he didnt like the florinef altogether and told me to slowly start going off of it! ugh...........so this time around, a week and a half ago, he told me to do .3 to .2 to .3 to .2 ever other day for a week and then just do .2 every day for a week and then switch between .2 to .1 for a week, then for a week do .1 every day, and then go off of it.............i had been on .2 for about three days straight, not jumping back and forth, every day between .3 and .2................and then this happened this morning...............................ya know, my PCP said he doesnt believe that is just coincidence that this is occuring with playing around with florinef...............i think i agree....i think this is more playing around with meds that is causing this to happen than autonomic dysfunction................my cardio disagrees and thinks it's auto dys.........................who knows WHAT it is that is causing this, but the more obvious culprit here is the florinef.................i just wish someone could tell me auto dys or florinef or what!

as for pushing myself, i havent really done anything too different. been doing the same stuff................

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Cardiactec,

So sorry you have had another scare. Since it is hard to answer the question without being a keen observer, I guess you are on the right track by trying to reduce it gradually and stay vigilant at the same time. Could you wear some kind of monitor during dose changes to get a signal for when to start being careful?

Good luck in taming this new thing.

OLL

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this is just an off the wall comment. But, with you high HR or bp( forget which). what was he thinking????????????????

If it went higher because of the florinef your vasodepressor reaction is appropiate! Also just because you reduced the dose, does not mean the level has reduced- yet. You may be at high levels still.

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Hi Angela,

I'm so sorry to hear that this is happening to you again. It must be so frustrating. I hope you can find some answers soon.

How are you doing now? Are you recovering okay, or is your POTS flaring up as a result?

Thinking of you. (I will get around to emailing you....it just takes me a while sometimes!)

Take care,

Rachel

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I know you have a really high HR and are Dxed with POTS. Are you also DXed with NMH? Sure seems like you have that, too. That's when your BP precipitously drops out. Many have both. Treatment for both is pretty similiar. And, I definately agree that messing with your florinef dosing must somehow be involved with your new fainting spells. Florinef increases your blood volume. Coming off of it must be lowering blood volume and contributing to the subsequent faints.

Since your symptoms are so dramatic (and frightening!), could you arrange for your cardio and neuro to conference re. your new symptoms and meds? I would assume that your PCP would acquiesce to their expertise.

I'm so sorry this is happening to you. I'm keeping you in my thoughts and prayers.

Hugs-

Julie

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hi julie,

yes, i have an extremely high HR, have been diagnoed with POTS, but never diagnosed with NMH. my tilt, about 5 of them over the past 5 years, have all been very positive for POTS but not for NMH/syncope.........i never have had problems like this out of 6 years in dealing with autonomic dysfunction.....it amazes me that my BP, even with .2mg florief a day, is still causing my pressure to drop out and causing me to pass out ..............this is very odd for me, as i do not have blood volume problems to begin with (was check with that thermodilution something or other green test) and was found to be "normal volume".....so the reasoning behind me taking florinef i'm not too sure with to begin with, perhaps it has some other mechanisms to help people with syncope who are normal volume???

ya know, i have been wondering why my cardio hasnt contacted my neuro instead of ME playing the middle man here........i did my part with the last episode by letting everyone know what happened/how i was feeling/etc and everyone kinda just tossed their hands up and said "do this" or "Try this"....not once did ANY of them consult with one another about what had happened, or what the appropriate thing to do would be -- instead i heard both "go off florinef" and "stay on florinef". i love that everyone is in agreement over what to do!

sorry guys, just frustrated and not really knowing WHAT to do. about today, i just notified my PCP via email....figured nobody would do anything anyway, so just emailed him and let him know what happened...........i'm not going to even bother calling my docs anymore, telling them i'm passing out, etc, because nobody is in agreement of what to do anyway....just seems like a big guessing game with what to do/not to do........

thanks for all your thoughts and prayers...

Cardiactec.

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so sorry that you are now dealing with fainting it is not cool at all.. and canbe very scary to go thru....

i hope that your docs can figure out what is triggering them and find you something tha might help relieve your fainting..

hang in there and rest up and take it easy till you feel back to your normal baseline

hugs

linda

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you do know that the vasodeppressor response is to HIGH bp right? Like I said, your high already then add florinef and your brain sees danger and lowers it.

I have NCS, so I know a little on this subject. From what I have seen re your HR and bp, it would be dangerous and would need lowering!

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hey there, my BP was low -- around 86/60 and i was symptomatic, along with a HR of 200. they put me on florinef to raise the BP....i didnt originally have high BP, and actually still dont, even with high doses of florinef....

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Hi Angela,

Hope you're feeling better today. As I told you before, I think that playing around with Florinef may have caused the syncope/presyncope that you're experiencing. This doesn't look like an easy situation - on one hand, beta-blockers are needed to control your tachycardia, and on another hand, the beta-blockers are inadvertently causing the hypotension. Thus, I can see how your doctors wanted to get Florinef on board to increase blood volume and hopefully, blood pressure. It looks like you're not getting that benefit that Florinef "should" provide, so I think your doctors are correct in trying to wean you off of it now. This issue ultimately will be what to do next - midodrine is one option that you said didn't give you any benefits. I wonder if Mestinone will be something they would try next. Hope you can get the help that you need soon :lol:

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I'm sorry your going through this rough time. I hope your doctors can find what works for you.

It's scary to have near syncope, then to have full syncope----especially considering this is something newer for you.

The doctors definately need to put their heads together on this----will they communicate with eachother?

You'll be in my thoughts and prayers for a solution to this.

Take Care,

Maxine :0)

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Maxine, I wish my neuro and cardio would connect and talk, but they dont.........they used to, at first, then i went to mayo clinic and mayo just said "severe POTS" and basically gave neither my cardio nor neuro anything to work with that they hadnt already tried.............so i think, to a point, both have dropped the ball with communicating with each other about any other potential treatments. this is why i didnt want to go to mayo -- because once mayo closes the door, everyone follows their lead.........my cardio expects mayo to handle this, and my neuro expects him and only him to handle this, my PCP is kind to listen to it all, but doesnt ever talk to my cardio or neuro, and mayo NEVER is in correspondance with ANY of my docs...............phew..........terrible........makes me tired to even read what i just wrote! and frustrated...............

doctorguest, i have already tried mestinon and midodrine. neither helped and one of the two (cant remember which) actually made me feel worse............................they have me on a pretty hefty dose of beta blocker, and i have been taking such a high dosage for about 4 years now. i NEVER EVER had a problem with hypotension/syncope while JUST taking high dose beta (with nothing along with it to bump up the pressure)...it was only until about 3 or so months ago that i started having a lot of pre-syncopal events, and now, recently syncope.............so i dont think the beta is the problem in causing the hypotension/syncope, cuz i have been on extremely high doses for 4 years now without any other med to keep the pressure up (til recently taking florinef) and never had a problem with hypotension,syncope.........

thanks though for your suggestions.........

this too, hopefully, shall pass.

cardiactec.

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