Just wanted to let you know that I'm going for a tilt table test bright and early tomorrow morning (I have to leave at 6am) to see if I have neurocardiogenic syncope/neurocardio hypotension. I'm nervous about the test but I'm sure I'll survive it - I've been through worse.

I'll let you know how it goes when I get home and recover from it. Hopefully I won't go so far as fainting because I'm sure that would make it really hard to recover.

Peace and healing,
Annie

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They would have brought me down sooner (before I got so so sick) but it took a little while to get my BP before bringing me down. My BP got down to 50/something (they didn't tell me the bottom number, just the top one). Then they brought me down and pumped me full of saline (three small bags!), got me sitting up, kept checking my BP, and had a cardiologist talk to me. I have been diagnosed with vasovagal syncope/neurocardiogenic syncope and I may go on treatment for it (beta blockers). I'll be talking about all this with my LLMD on Thursday.

It wasn't a very fun morning but I'm glad I had the test done. Nice to have some validation for symptoms doctors haven't taken seriously before! And this will probably be helpful when I apply for disability soon.

--Annie

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My BP also (after about 20 minutes of steady BP decline and increase in heart rate) eventually dropped down to 56 over "a number they couldn't detect"

Anyway, I felt lousy for several days after. But did appreciate the validation.

Get plenty of rest Annie for the next few days. Don't push yourself.

Oh, they put me on Proamatine. It helped. I was on it for at least two years (this test was before Lyme dx). Now, after two years of abx I've been able to do without the Proamatine. This may only be a temporary improvement. But at least it is an improvement.

Sorry you had to go through that very, very unpleasant experience but it is nice to have the validation, isn't it? I 1,000% understand exactly how you feel - all around. I have neurocardiogenic syncope as well. I'll bet this board is full of orthostatically intolerant people who have never been checked. I think it would go a long way toward helping many of these people get their disability as well. I think it is what has finally made Social Security decided to award me my benefits. Or, at least I was told that would happen soon and, after almost 4 years, without a hearing. I feel it is this test result that finally made them open their eyes enough to acknowledge I truly do have a problem.

So, sorry you had to go through that but it's nice to know what the problem is. I hope you can tolerate the meds because I can't. Those things actually made it worse for me and the Proamitine makes my heart race. I don't trust a vasoconstrictor. If you think about it, that supplement that was recently removed from the market was a vasoconstrictor and it caused those who took it to have heart attacks and strokes. So, be careful if you do go that route.

By the way, I started at around 120/80 and when I started to pass out, at 26 minutes (I was drenched in sweat a long time earlier from the strain of trying to remain upright!), my BP was 58/30. Frankly, now that you've all mentioned the readings going so low that they could not be read...I'm wondering if 30 might be the cut off for what is readable and the guy who did my test just threw it in to have a bottom number? He was pretty slack, I can see it happening.

What was your starting BP, Annie? I ask this because you only have to drop about 25 points to be considered positive. I didn't know this until afterwards. The hospital allowed me to drop 62 points when they could have layed me back down 2 minutes earlier when my BP was around 80/50. They put me at a much greater risk than they needed to and there is little excuse for them being so careless.

Anyway, I'm glad you finally have something of an answer and I hope your disability benefits come through soon.

Angie

hang in there!

Hang in there.. it's going to get better.

Angie, my BP started out a little high, actually, because I was nervous about the test. I think it was something like 140/80 or something like that (I'm not totally sure). I'm not sure how quickly my BP dropped because from what they were telling me, it dropped pretty fast. The first doctor who talked to me before the test (who I really didn't like because he seemed to be talking down to me, questioning everything I told him, and just didn't have a good bedside manner at all) told me that they would make me go all the way to passing out. Then the nurse told me (after he left) that they wouldn't really push me that far.

I'm glad the test is over and that I had it done. Although it was pretty unpleasant, it's kind of nice to know what the progression of these episodes would be if I didn't manage to sit down or lie down. I like to know what will happen (I'm an experimenter) so it was kind of interesting.

Does anyone know of any reasons why Lymies might be more prone to orthostatic intolerance than other people? Does the Lyme mess with our dysautonomic nervous system? It's just interesting that so many of us have these problems (I did a search on here yesterday and it seemed there were quite a few conversations about this before).

Peace and healing,
Annie

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So in essence, they let your BP drop over 80 points??? I don't know how doctors keep their license doing things like this. That test is not without risks and forcing patients to undergo such extreme drops in their blood pressure to satisfy their own sadistic desires...grrr. I believe your result was positive LONG before you almost passed out.

I'm sorry you had to go through that, willing or not. I don't think there was any call for making you go so far. I posted on another board to see if anyone knows what the limit is on the drop in BP that you have to experience to have a positive result. I hope they can find something because I would love for your mom to call the head of the hospital where that doctor works and file a smoking complaint about his actions AND his attitude toward you. What's the point of getting a positive result if you cause further harm or even death to the patient in the process???

Sorry, I went on a vent. I hope the other group has something on this so that a complaint can be filed and that hospital gets their act together. If, in fact, they find something, I think I'm going to write my own complaint to the hospital where I went through my test as well. These places are way to lax about a dangerous test...

I'll let you know if I hear anything. Come to think of it, you can sign on the other board if you'd like. The board is located on yahoo groups at "neurcardiogenicSyncope-fainting. They don't explore much ground in their discussion, like we do here but go over there and chat with them if you like. Just one warning, the board STRONGLY opposes questioning alternative treatments, supplements, etc. I hopped on a long time ago and started posting about various things and received a warning telling me that people were upset that my questions were changing the focus of the board. I posted a good bye, stating that I wanted to be someplace that explored various therapies, etc such as Lymenet, and received a number of replies that people were interested in new things, behind the scenes I also received a number of emails that people were frustrated because the conversations there were so limited. However, all in all, it is a good board. It's intended to be a support board and the members there are nice. You just need to keep the topics 'safe' and personal if you decide to do much posting over there.

Angie

1: Europace. 2004 Nov;6(6):548-51

The head-up tilt test -- a cause of myocardial infarction.

Goolamali SI, Loh VL, Sopher M.

Cardiology Department, St George's Hospital, Blackshaw Road, Tooting, London SW17 OQT, United Kingdom. [email protected]

INFARCTION: A 74-year-old man with no known ischaemic heart disease presented to the Cardiology Department with a history of multiple episodes of pre-syncope. During a head-up tilt test to investigate a neurocardiogenic cause, after glyceryl trinitrate provocation he became profoundly hypotensive and unwell. Subsequent ECGs and Troponin-T levels confirmed a Non ST-Elevation Myocardial Infarction. Angiography confirmed coronary artery disease. This case highlights a rare complication of tilt testing and emphasises that the test is not without risk.

PMID: 15519258 [PubMed - in process]

The doctor I had wasn't one I liked, anyway, but the second one I talked to was nicer and talked to me more on my level (used more technical talk, he could tell I knew what I was talking about).

I'm off to my LLMD on Thursday (well, I'm off tomorrow because a snowstorm is coming on Thursday so I'm staying over tomorrow night to avoid driving in the snow). I'll let you know what he says about all this and whether or not he's going to put me on treatment.

Peace and healing,
Annie

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Please see post for "What Meds. help for Postive Tilt table test" under Medical.

I have though for 3 years now my test was positive and my cardioligist told me it was neg. and I always have disagreed, finally I went and got my records at the hospital and sure enough in black and white!

INDICATIONS: Syncope

IMPRESSION: Positive tilt table test for relative bradycardia, hypotension, and pre-syncope.

Baseline electrocardiogram demonstrates sinus rhythm, without evidence of infarction or ischemia. Systolic blood pressure is 130.

The patient underwent a tilt table test. She was put upright for 15 minutes. She became tachycardic at 13 minutes to a rate of 108.
She suddenly became relatively bradycardic with a heart rate of 63 and then her blood pressure dropped from 130 to 86. She became nauseous and pre-syncopal. The patient was then put in the supine position with resumption of symptoms.

If I understand this report right does pre-syncopal mean I almost passed out?
Cause they said we are sorry we just needed to have you pass out for the record, before we could bring you back down.

My fatigue is really bad and I feel like I can not even sit up at times cause my body is so heavy and tired and light headed and I have numbness in my head at times, and feel like I'm going to pass out.

Does this sound like it's related to this condition and are there meds. that can help this and could you please share what has helped any of you.

I'm very angry that this Dr. lied to me and that I got his office notes and follow up letter to my PC etc. (did all my homework except for the hospital records).

He insisted I had a neg. test!

I've had a lot of good Drs. but boy I have had my share of AS@#oles! and I have to wonder if they have made me sicker than the illness itself sometimes!

I remember arguing with my husband all the way home that he was wrong.
My husband of course took the Drs. side saying he's the DR. and he knows more than me!

[It's been a long 3 years!Glad I finally got to the bottom of this, almost wish I was wrong cause I'm so damm mad now!] Will this ever end?

Thanks for any help you might be able to give me.
Swiss

It's not like he had to treat you for Lyme or anything!

I "passed" my TTT because the stupid nurse didn't tell me to stop the Inderal LA for a long enough time. The dr said I should have stopped it for 3-5 days, not one day as she told me!

I take atenolol now for the tachycardia. I don't know if it would help you or not. Do you have tachycardia often? I have it constantly without the atenolol.

I can't remember the other med you could take. Go to Wild Condor's site. She has NMH and talks about it there.
www.wildcondor.com I think that's it.

I've been put on meds since my very positive test. I was on Inderal for about two months with no improvement and now I've just started Florinef. My LLMD is also trying to get me daily IV hydration to help with it since hydration is a big issue with dysautonomia (dysfunction of the autonomic nervous system - NCS is one of these conditions). So far my insurance is denying coverage for the hydration but we're fighting for it.

Hope you can get some answers and get some treatment for this. It's possible a doctor might want to order a repeat TTT to push you further. It sounds like they took you down rather quickly when you started having symptoms so it's possible a longer test would be helpful. Not sure, though, just a thought.

--Annie

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