Positive tilt test X 3

Last week I had my third positive tilt test.

My tale of woe and sorrow started in mid December when I had a syncopal episode on duty. I was still shocky when I was taken to the ER. They kept me over night to rule out an MI, did three serial blood draws and 12 lead  ECGs. These were all negative, and I was scheduled for a tilt test.

After being released from the hospital I felt a little run down for a day, but after that felt fine.

During my first tilt test I had another syncopal episode with a 4 second "pause" in my heart rate. The Doc dosn't like to use the term "asystole", I guess it is to scary.  My Dr. asked if I had any history of sudden cardiac death in the family (we don't). He stated this is probably not life threatening, which is reassuring, yet scary since he brought up the D word! I was given a prescription for fludrocortisone, instructed to drink plenty of fluids, and eat lots of salty foods.

During this period I continued to feel fine. I exercised regurly. I checked my b.p., during this period and noticed while I was taking the fludrocortisone that my b.p. was elevated. My normal b.p. is aound 120/70. While on the fludrocortisone my b.p was 160/80.

Tilt test number 2. I became some what dizzy, and light headed when I was first turned up. Five minutes into the test I was given nitro sublingual. I again had a syncopal episode with with a 6 second pause in heart rate. This time I was prescribed theophylline.

Theophylline is normaly used for respiratory problems. A side effect is elevated heart rate, and this is the reason I was given it. While on theophlline I felt truly horrible. My heart was racing all the time.  My temperature was elevated. I was restless. I couldn't sleep very well, which of course left me tired the next day. I had g.i. and stomach upset. When I would exercise my heart rate would go much higher than normal. Normaly during work outs my heart rate gets up to around 150. While on theophylline h.r. would go up to 170! I got a lot hotter during workouts, and sweated buckets. In short while on theophylline I felt like I was on crack!

Tilt test number 3, I was turned up  got dizzy and light headed then passed out. Heart rate paused for 6 seconds. The Dr. told me he had never had a case like mine. He is fairly young probably in his mid to late 30s. He wanted me to see a specialist in Toledo. This Dr. can't see me until January of 2009! In the meantime I'm taking metoprolol. I'm also considering seeing a different electrophysioligist.

On the metoprolol I again feel fine.

Since the syncopal episode in December I have felt fine other than when I have had my tilt tests, and when I was on theophylline. I have to wonder is the treatment worse than the problem? Do I really have a problem other than being intoleratnt of tilt tests?

[lovingmom2]

Is your doctor thinking POTS?  I would make the appointment for the specialist (Dr. Grubb?-if so he is considered the best-people all over the US come to see him) and in the mean time go see one of the doctors at the Cleveland clinic.  You can always cancel the other appointment if you find a doctor that is helpful at Cleveland clinc. Good luck.

[firefightingmedic]

Lovingmom2, I looked up POTS, and it dosn't sound like what I have. I become bradicardic, POTS sounds like the patient becomes tachicardic.

Lovingmom, you are correct it is Dr. Grubb that they want me to see. They are trying to get an appointment sooner! Thanks!

[dolfnlvr]

I'VE LIVED THIS POST!!!!  You are not the only one with this kind of a tilt table result, and I'm surprised your doctor is prescribing such varied meds!!!  To increase your heart rate on the OFF chance that you MIGHT pass out is sort-of asking for a whole different set of issues.

Here's my story
  My heart rate was monitored during a fainting spell when I went in for a tilt test in 1994.  It dropped to approximately 11 beats per minute (that's more than a 6 second pause by the way) and the doctors and nurses got a little jumpy on me too.  Even if you tell them what happens, they don't really buy it until they see it.

I have been "passing out" since I was 15 years old.  I had no previous illnesses, no heart condition, no reason to pass out.  But, when I did pass out it was significant.  I was rushed to the hospital in an ambulance on at least 3 occasions and by the time the triage nurse and doc would see me, everything would have gone back to normal and they would Poo-poo it as just a fainting spell.  It wasn't until I was getting a small mole removed in the dr's office that I was referred to a cardiologist for testing.  I have an overreactive vagus nerve.  When my adrenaline starts pumping everything is fine, but when my "calm down" reflex kicks in, it goes a bit too far.  This causes my autonomic system to lower my blood pressure and heart rate, but instead of slowly dropping the two, I bottom out....and BAM unconcious...usually just for a minute or two...but it is impressive.  When I did this in the Dr's office, he SAW the reaction and realized it wasn't a "simple fainting spell."  At the time, there wasn't a real name or treatment for vasovagal syndrome, but a local cardiologist just happened to be researching the use of the tilt table to test for the disorder and the use of anti-arhythmetics to counteract the effects of the vagal response.  I'm patient #42 in his study...:-) My claim to fame I guess :-).

Anyway...they considered a small pacemaker to keep my heart rate from dropping too low, but meds (Norpace--which is a serious drug, but I had NO problems with it) took care of it, so that was never done.  I want to stress that the pace maker was NOT because of a heart condition.  It was NOT because I was going to drop dead from heart attack.  It was simply meant to keep me from losing consiousness, which can be detrimental to your health if you are in a bad position when it happens.  Who really wants to wear a helmet around town so they don't get a concussion when they fall out??

Really though, they have found that simply taking salt tablets and keeping very hydrated helps to alleviate symptoms in some.  This effort increases blood volume and therefore keeps your BP from dropping to extremely low levels.  

Most people who have suffered from vasovagal syncope are completely normal, and need only be aware that certain situations can cause them to pass out.  This is important in making sure that those around them know not to call an ambulance, or go crazy when/if the event occurs.  For me this means that if I cut myself, I need to sit down and drink plenty of water for awhile.  If I come upon an accident or some other adrenaline causing situation, I need to sit down after it is over, because the dramatic drop in BP when the excitement is over can cause me to pass out.  I have to be sure to drink LOTS of water when it is hot outside, because high temperatures can lower the human blood pressure, which can result in my passing out if I'm not careful.  And, stomach viruses set me into a fit of PVC's and fainting because of the autonomic response to the infection.  

This all sounds horrible.  But it's not.  I've passed out three times in the past two years.  Once when I fell down a short flight of steps, once with a stomach bug, and once when I picked my Dad up from the hospital after a heart catheterization (stressful day).  On all three occasions, I calmly laid down, explained my situation, let the feelings pass, and hopped up and moved on with my day.  Once the event is over...it is over.  Though I sometimes feel pretty wiped out afterward.  

Other than those three events, I haven't fully passed out since I was in college, so that's been about 8 years.  I've had NUMEROUS near misses, but I'm pretty good at feeling them coming on and laying down to not let my HR and BP drop too low.

Good luck to you.   If you have any further questions or concerns, feel free to send another message. I'm glad to share whatever I can to help alleviate your stress. I can also give you information about the doctor I went to originally (the one who finally gave this mess a name).  Maybe he could be a contact for your doctor, who knows...

Take care.

[firefightingmedic]

Dolfnlvr, around here (S.W. Ohio) the tilt tests are fairly rare. The biggest hospital in the area, University of Cincinnati Hospital does over 5,000 cardiac angio grams a year. In comparison they do less than 100 tilt tests.

I am in my mid 40's. Like you I have had about 6 syncopal episodes spaced out over the years since I was 17. The first one was when I was ill with a respiratory staph infection. The last one occured in December while I was seated in the fire engine.

The Dr. has mentioned the the possibility of a pace maker. I would be very reluctant to have this done. It seems extreme to me for a problem that only seems to effect me every few years. Also under NFPA which is the standard for fire fighters having a pacemaker is cause to be retired on disability.

What makes my case a little different is I have almost no warning when this is going to happen. I know they tell you to sit or lay down if you feel this coming on. But with me it seems to come on very suddenly. The other problem is I seem to be "cardio inhibited", meaning the main cause is slow heart rate rather than the drop in b.p. As you said the problem isn't so much with the heart's pacemaker it is more the brain sending the wrong signals. Just to use a lot of big words I have "cardio inhibited malignant vasovagal syncope". The "malignant" part sounds scary, but it just means I have little or no warning of an attack! My wife always said there was something wrong with my head, and I guess she was right!

So is the norpace working for you?

[lovingmom2]

Are you seeing an EP cardiologist?  I live in the same area and wondered who the better EP cardiologists are.  

[dolfnlvr]

Norpace was great while I was on it.  I did not have a problem at all.  Though they did put me in the hospital for the first two days of taking it for observation.  Apparently it can have some pretty nasty side effects for some.  But for me...it was the "miracle drug."

After having the tilt result that you read above they put me on the Norpace and waited two days to test me again.  They put me on the table, and after 20 minutes AND some medication that should have caused me to pass out...I DIDN'T!!!  That was when they decided no pacemaker and I was fine on the meds.

I don't take the norpace anymore.  When I wanted to get pregnant I had to come off, and after that I just never went back on.  I pass out every once in awhile...rarely anymore...and I've learned to "be prepared."  

I sent you the contact info for my cardio.  He can't discuss my specifics, but he has published much regarding this subject and can discuss treatment options with other docs.  It may be worth having your doc reach out and touch someone :-)

Good luck to you....

[firefightingmedic]

Lovingmom2, I am seeing an electrophysiologist out of U.C. I know the big name in the S.W. Ohio area in vascular cardioligy is the Ohio Heart group. They do a lot of work out of Christ. I keep meaning to talk to some of nurses I know who worked with the E.P. lab to see their opionion of the E.P. docs.

The good news is my appointment with Dr. Grubbs in Toledo is moved up to April, instead of January of next year. To me that's still a long way away, but better than 10 months!

Dolnlvr, I had my 4th tilt test yesterday. I made it to about 12 minutes before passing out. That is the longest I've lasted so far. My pauses in heart rate were "only" 3 seconds which is better than I did during the first three tilt tests. I'm trying to stay positive, and lasting longer, with shorter pauses in h.r. are good things! I had hoped the metoprolol would work. The only side effects I could notice were I was having more vivid dreams.

I asked the Dr. about Norpace. He said he started out with florinef, theophylline and metoprolol, because they are the least invasive options. Of the three I liked metoprlol best, I had no side effects, and it did seem to help some per the tilt test. The florinef didn't help at all and ran my b.p. up. The theophylline was the worst of all, it was like being on crack! The Dr. said they are very wary of norpace, because of possible bad side effects as you commented on. He used the word leathal, which dosn't  sound to good!

For now I am staying on the metoprolol until April when I make my road trip to Toledo! I could stop in Piqua Ohio on my way! Why couldn't this Doc be some where cool like Chicago?

[dolfnlvr]

Yeah...they never told me the lethal part until I wasn't on the meds any more.  Had I known about that, I probably wouldn't have done it.  But "back in the day" Florinef had not been tested for use with this...as I said, we were "cutting edge" at the time.  Remember too that my HR was at 11 beats per minute when I passed out, and the doctor was concerned that perhaps this might kill me on its own.  Since then, we've discovered that the effects are short lived and that my heart will not STOP.  There has been a lot of research in this area since I was 17/18 years old, there are more medications and more treatment options...you just have to know where to look.

As for the metoprolol....I find that funny/odd.  Metoprolol is used to SLOW the heart rate and lower blood pressure. Since your heart tends to pause between beats when your BP drops (which is what the tilt table causes) it seems odd that the metoprolol works to counteract the effects????  I find that I have MORE problems on Metoprolol (which I'm taking for some SVT) then I do without.  Weird.  

I wish you the best of luck, and I'm interested in hearing how things progress.  Your situation sounds very similar to mine, and I'm interested to see how you are treated.  

[Flo2000]

Hi All!
I'm an unfortunate member of the POTSy Club... Some of my symptoms are slightly different than yours, but I have the same overactive Vagus Nerve, intolerant to Adrenaline (stress), and everytime I stand, my heart misbehaves... I spent months in bed, incapable to even sit up. I tried many meds, & went to 3 hospitals, scheduled to the Mayo in April. I reacted to all the meds, all the doctors puzzled by my case, threw me out of their offices... Left on my own, I got a tip from another POTSY girl, which worked well for me too: HERBAL MEDICINE. I never believed in it until now.
The meds you are given mask sysmtoms to increase your quality of life but they don't fix your problem. With the herbal stuff, I am healing. I highly recommend. Please note that it is not a miracle treatment (take a pill & you're healed). This kind of treatment works over time (3 weeks to 3 months). Anyway, Hawthorn has been studied in Europe to help with Orthostatic Hypotension (Drop in BP upon standing), has worked fabulous for me!
Motherwort & Panax Ginseng will calm your adrenal glands for better response to stress. Reishi Mushroom has a healing property. It helps heal the areas of your body that are damaged. Omega 3 is called the miracle supplement, it helps your brain, adrenals, heart, has calming effects & many more. Highly recommended. I hope this helps you. I now can walk for a good portion of the day. I still have a while to go to retrieve a normal life, but there is a huge improvment! It took me months of trial & errror to get to this point. Good Luck to you all!