Fainting update

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Fainting update

Post  sailingmuffin on Thu Dec 10, 2009 5:31 pm

Hi All,

As most of you know, I am still having a lot of trouble with fainting spells/ Neurocardiogenic Syncope. In the past week, I have fainted about 8 times each day. This is really frustrating and quite scary. I have no clue what to do about it. My doctor recently had me try Adderall, a stimulant, which made the fainting a little worse and led to some pretty severe suicidal thoughts so I had to stop it. I spoke to his office today and he wants to go ahead and implant the reveal loop recorder in January. So that is the next step.

When I sked his nurse about something else to try before implanting a loop recorder, he said that he did not want to try anything quite yest. He wants to see if he can pimpoint the problem first. I understand this, but I am also a little scared as the fainting spe;;spells could increase withoiut treatment. The whole thing in baffling to me.

I feel like I am stuck between a rock and a hard place at the moment. I am constantly fainting and fighting migraines. Unfortunately, there is no known cure for either of these and so we basically treat them by trying to figure out what works best. In addition to the problem with fainting treatment, and as i mentioned in a previous post, the migraine medications that I have been on for several years have stopped working and my pain doctor is reluctant to make a change in medication. I can deal with one or the other, but having ineffective medication for migraine and no good medication for orthostatic hypotension is incredibly difficult and I am not sure I can do it. I just feel a little bit helpless, frustrated and scated at the moment.

Marc- quick question- what exactly is a blood volume study and was it helpful. I knwo I am grasping at strazws, but anything wil help right now.

I wish I knew what to do. I also wish that I did not have to jump through so many hoops to get treated for eaither of these things. I am going to take my headache calendar and a family member to the appointment with the pain dr and see if that helps. I am also going to do a little more research into service dogs or anything else that can be of help.

How do you deal with twochronic, debilitating illnesses?

Pain free days,
sailingm
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Fainting update

Post  Guest on Thu Dec 10, 2009 6:42 pm

Sailing (hi, I'm Porsche Fan over here)...

Sounds like you are really having a rough go. I have a theory of why your doc wanted to use Adderal as a stimulant--that would work on the autonomic system--but, you need to have a firm idea is the autonomic system is dysfunctioning.

Blood Volume and Hemodynamic testing does a few things. Dr. Fouad pioneered a lot of the technology is a guru at this stuff. It can check for distribution and flow out of the heart (that's one of the nuke tests) and the other checks to see if your body has enough blood, and it breaks down its components. It's much more accurate than bloodwork alone. I'm still waiting for those tests to come back.

The autonomic testing shows some rhythm problems. A lot of technical stuff that Dr. F. needs to weave together.

I'm still puzzled what the Reveal is going to show for you, outside of what an event monitor does. You have events frequent enough to see if it's a rhythm abnormality. If it was serious, you would have had a pacer or defib implanted already. The Reveal isn't an advanced device, and it's not exactly comfortable. Plus, an EP study should be done to really tease out some problems--but it's rare to find a cause for syncope in the EP lab.

I'm not trying to be a party pooper...just sharing the 14 months I've had this thign stuck in my chest that has really shown no benefical data outside of some asystoles (heart pauses) and my heart rate is in the 50's most of the time.

If they do an EP study, they can check for problems, then decide what needs to be done--saves a couple steps (invasive steps). I think autonomic testing may be more beneficial than having to go through the Reveal. Unless it is programmed to detect very certain hearth rhythms that can cause syncope, it's not going to show a thing. I faint all the time, and it doesn't show any real abnormalities. In other words, if it's programmed for ABC, and you have DEF happen, it's not going to have any data at all.

It's a major shortcoming of the device and you should talk to your doc about it. It's designed for the rare faint--an event that is very unpredictable thus takes a period of time to observe.

Dr. F. at CCF is scheduling into April. I have to go back for my test results and have no idea when I'll be called in--and I can be there in 1.5 hours. I think your doc really needs to pull some data together regarding hypotension and autonomic response. Rhythm would be obvious (I'm not a doc, but they have to have a ton of EKG tracings on you), just like me. That's why your EP at home couldn't do anything for you...just like most of mine.

I'm balancing both hypotension and hypertension and avoiding anything that could cause a faint. I'm sorry you're having such a rough time. I just hope there's a good rationale for using a Reveal and it's not being used as just a "study tool."

So I do understand how you feel with both migraines and syncope. I'm in that gray area where the docs aren't quite ready to stick a pacemaker/defib in yet.

And you're correct, there are no solutions, just some treatments that are very hit and miss. I'll let you know about the results of the other tests. On my end, my other docs need the data. We had to up a blood pressure med yesterday--one that can make syncope worse, but help to minimize the risk of a heart attack.

Wishing you the best (shoot me an email with any questions)..

-MGB

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Re: Fainting update

Post  sailingmuffin on Sat Dec 12, 2009 11:32 am

Hi mgb,

Thanks so much for your reply.

No one has mentioned any bloodwork to me. However, I think the blood volume information could be useful as would some of the other tests. Nor has anyone ever mentioned an EP study, though I think it might be a good idea. I am definitely going to talk to my doctor about it. I just feel kind of stuck with the whole thing. Dr. G. is the first drI have encountered who knew anything about POTS Neurocardiogenic syncope. Still, i wish it was a little easier to communicate with him. So far none of the medications have worked well and I am left without anything until the reveal. I am going to call and ask about trying a different stimulant. I just wish I knew more drs who dealt with this,

I am fainting way too much. 18 times yesterday (though I do have a bug). I see the dr on Mon.

Pain free days,
\sailingm
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Re: Fainting update

Post  Paradox on Sat Dec 12, 2009 2:24 pm

Sailing,

18 times! OMG!

That has got to be so scary and limiting of your activities.

I hope they find something out soon.

Hugs,

Charlotte
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Re: Fainting update

Post  Anna's Mom on Sat Dec 12, 2009 6:14 pm

To SM and Marc:

There has been some really interesting discussion on the CSF leak forum about what goes on with leaking. The leakers often have POTS. It gets technical. There is a cardiologist and a pharmacist posting about their personal experiences:

http://brain.hastypastry.net/forums/showthread.php?t=77183

Three pages of posts. Just to show you how complex it gets. They like to argue with each other!

Cheryl


Last edited by Anna's Mom on Sat Dec 12, 2009 6:23 pm; edited 1 time in total
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Re: Fainting update

Post  Anna's Mom on Sat Dec 12, 2009 6:16 pm

Here's another interesting thread:

http://brain.hastypastry.net/forums/showthread.php?t=76994

Maybe you can find something in these posts that helps you.

Cheryl
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Re: Fainting update

Post  Guest on Sun Dec 13, 2009 5:42 pm

thanks for the info cheryl, i'll check it out!

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