Follow-up to bad TTT - - is this reasonable?

[POTSMama]

Hi again,

Well, I almost don't know how to take this outcome! I called my cardiologist's office today and politely informed them that the people at the hospital (Swedish Hospital in Denver, Colorado) who gave me the TTT yesterday (previous topic) used completely improper procedures based on my research on the test, and reminded them that I am a Ph.D medical researcher and did my "homework" on the test. To his credit, the cardiologist was upset to hear that they had allowed me to move/stretch/talk during the test, had not taken a proper quiescent baseline, had used only 30 minutes upright with no stimulant and then terminated the test even though I was just getting dizzy (the standard is 45 minutes IF no stimulant is given, and 10-30 min if one is given), etc. He agreed the test was poorly done and thought it should be redone. But his solution was to go to a different hospital in Denver (Porter) to have it done with Isuprel (spelling?). The problem is that my medical insurance mandated that I have it done at the first hospital and will charge me a relatively huge out-of-network cost for having it redone again at the other hospital. He says I could also have it redone at the first hospital with Isuprel and it would be covered, but I totally don't trust that place now to know what they're doing and wonder if they're even safe. So I'm going to have to think about whether I want to re-do this testing at all right now.... Especially since I'm starting to wonder if my cardiologist is taking me seriously and if he really knows anything about dysautonomias! After reading the below, would you all give me an opinion as to whether or not you think I should absorb the expense to have the test redone with Isuprel under this cardiologist's evaluation?

Now that the TTT is past and I'm going to delay a couple weeks making a decision about a retest, I asked the doc if I could now go back on a much lower dose betablocker to control my symptoms (as we had previously agreed I would after the testing was over) - - For 14 years, betablockers have controlled my symptoms reasonably well but then I started feeling horrible this year which is why I went to this cardiologist in the first place. He found out that my cardiac output was way low, which he said was due to too much betablocker for too long. He told me it takes weeks to wean off of betablockers and get past withdrawal symptoms, so he completely took me off them for the last month, and sure enough my cardiac output measures back up to normal and I feel less tight-chested, less exhausted, and more able to breathe. HOWEVER, I've also felt awful in other ways these last weeks: trouble sleeping due to tachycardia episodes and/or wild blood pressure swings, wild blood pressure swings during the day making me dizzy, my pulse zooms as high as 140 when I so much as walk across the room (with a pulse of 70 when I first wake up in the morning), adrenaline surges wtih loud noises, etc....and I have 2 little ones to care for and a home-based consulting business, so this has been a tough month. I figured it was worth it to make sure that the high dose of betablocker was the issue and get the testing done, and I was relieved that this doctor had directed me to NCS as a possible diagnosis after just being told I had "hyperactive nervous system" or a "hyperactive adrenal gland" for years. Still I am VERY anxious to get back on some low dose, yet today the cardiologist suddenly says he'd "really prefer" I "get off the medicine completely" but to go ahead for a couple weeks and take 1/4 to 1/2 pill until I see him again then.

THEN he says he wants me to read a book called "The HeartMath Solution", and that he thinks I should go see a doctor named "Bill Bergman" who does "biofeedback techniques that do wonders to help people control their heartrate". I thought, hmmm, I've never seen this as a treatment option in any of my research on dysautonomia but I thought I should stay openminded. (Has anyone here heard of such a thing?). Then I asked him if he was familiar with POTS, also called Orthostaic Intolerance, and I told him I have been researching this and really feel that POTS matches my symptoms far more than NCS, which is what he has been evaluating me for. And he says "oh yes, I'm familiar with that, but I still think you more likely have NCS". So I pointed out that I've never fainted, and even though my blood pressure sometimes drops out it is not always when I'm standing, and it also goes really high sometimes, and yet I very, very consistently have postural tachycardia (and hyperadrenegic symptoms) when I'm not on betablockers. To which he says "well, read the book and we'll talk more about all this in two weeks when you come to see me".

Well, then I looked up the book by the title he gave me ("The HeartMath Solution") ACK! Here's a partial description of the book from Amazon.com:

"The HeartMath Solution may easily be written off as a book too eccentric for widespread public consumption, and that's unfortunate. The title's a bit misleading--it's not about cardiac care and it's not about calculus, but rather how 30 years of research have shown that the heart's "intelligence" affects emotions and physical health--especially when it comes to handling stress--and specifically what you can do to balance heart rhythms, reduce stress hormones, and boost your immune system. Yes, it sounds complicated, especially when you read that cardiologists worked with physicists and psychiatrists to develop the HeartMath program. But it's worth brushing off your skepticism and exploring the concepts in the Solution, as many employees of Fortune 500 companies have already done.

The "intelligence" that the authors focus on refers to both the heart's "brain," or the 40,000 neurons found in the heart (the same number in the brain itself), and the intuitive signals the heart sends, including feelings of love, happiness, care, and appreciation. When such positive emotions are felt, they not only change patterns of activity in the nervous system; they also reduce the production of the stress hormone cortisol. When there's less cortisol, there's more DHEA, the so-called fountain of youth hormone.....This is a book that takes a bit of scientific understanding and a lot of time to wade through, but one that could help you prevent stress from ruling your existence"

So I ordered the book anyway and I will read it, and I DO think that meditation techniques and other calming things have helped me some over the years (I've tried that before), but they do NOT "cure" the problem. So, do you think my doctor is just blowing me off and now saying he thinks that my extreme tachycardia episodes and blood pressure fluctuations are just "stress" (and why would he change his mind unless he really IS believing that rotten TTT "negative" test result), or is it reasonable to believe he's still evaluating me for a physiologic disorder but thinks these kind of meditative approaches may help calm my system even if I do have NCS (or POTS)? Anyone else heard of or read that book? I asked him why he felt it was so important to re-do the TTT since I have all the classic symptoms of POTS (and some possible symptoms of NCS) and they are treated the same way with low-dose betablockers as a common first line of attack (which had worked for me for a long while until the heart suppression occurred) and we have ruled out cardiac problems themselves and pheo (if my urinalysis comes back normal; the results aren't in yet). He says "well, I still want to be sure we confirm the neurogenic diagnosis before treating it". Input, guys - - do I need to look around for a dysautonomia specialist at this point and if so how do I find one? (I'm starting to think there isn't one in a 5 state region around Denver! Can I call Vanderbilt or Mayo or Grubbs and ask for a referral doctor out here maybe? ) or should I just wait the 2 weeks and see what this cardio doc (Dr. Collins of South Denver Cardiology Associates) has to say. I intend to walk in to that appointment in 2 weeks with a few key POTS articles (like info from this site and Vanderbilt's website) and ask him to read them and compare them with the very detailed symptoms history I gave him before I even knew what POTS was -- I don't see how he could miss the match.

This is so frustrating. After years of being unsure of what I had, I really am SO convinced (as is my husband who is also a medical researcher) that this is now truly what I have. I fit the POTS definition, as far as I can tell, perfectly, for the "hyperadrenergic" kind. Further, I think my mom has a milder case... after talking to her lately, I found out that starting at menopause her baseline pulse jumped up to about 115 (it had previously been much lower) and she started having dizzy spells where she thought she would faint and then her doctor put her on a betablocker and she's done well since (no dizziness and baseline pulse more like 70). I didn't know this, and she said she hadn't realized it was important to tell me until she heard me complaining of my symptoms. (Sorry so long again, after I promised to be more concise! I won't do it again, promise!)

Advice, please?

Carol

[nantynannie]

Carol,

Hi there! Well I am glad to hear that he agreed that the test was poorly done (to say the least!) My advice is that you go back to the same place (because of money concerns) but insist that a qualified doctor is present throughout the test. Also, make sure they layout the exact procedure before you go in. They should not give you the isuprel until you've gone 30 minutes without symptoms.

All my nurse did during the test was write stuff down. The doc was there the entire time.

As far as your doc goes, it is my opinion that he thinks your are a nut. This does not really matter because most docs think we are nuts. This is caused by anxiety don't you know? This is an hysterical female disorder. I can assure you that 90% of my docs think I am completely wacko. Fortunate for me, I will soon be seeing a specialist.

I think you should get the other test done ASAP while you are off of the meds anyway. Then you will need to find a new doc if he refuses to give you the medication you need. I know this is not easy, especially when insurance companies are involved, but you have tried it his way already. I think you might need a new perspective and a new and improved beta blocker. I am only saying that because you have been on them so long, I am assuming it is an older medication. There are new ones on the market that are much improved.

So in short, I would get the test done right away, go back in two weeks and see what he has to say. If he won't give you the meds, then you need a new doc.

Ann

[nantynannie]

Hi Carol,

I forgot to say that yes I think you should try to find a specialist. I found one on one of the Dysautonomia websites. I think your idea of calling Vanderbilt is a good one.

My doc is a "good" cardio, but he just doesn't understand POTS. He thinks that dysautonomia is only when the BP drops and the heartrate drops at the same time. He gave me the beta blockers and they sucked, so now he is fresh out of ideas (except that he will bet a paycheck that I have a pheo!)

You need someone who knows what they are dealing with.

Ann

[Merrill]

Hi T&L's mom. .. You raise a lot of interesting questions. Since you asked, let me offer my opinion in response.

First, I'm glad to hear you got some validation that the test was imperfectly done. You didn't say how your doctor interpreted the results of the test, however; I think we only know from your earlier posts what the nurses had to say. I imagine that some information may have been gleaned from the test. I'm curious if you have more information about that. However, I don't know why he's pushing the NCS diagnosis; from what I've read about that condition, it doesn't sound right to me either. But you'll have to do more research and more talking with perhaps other physicians to know for sure. (Have you checked out the ndrf.com Web site? Click reference and download their book; it's terrific.) Anyway, I understand your trepidation about repeating the test at the same place; I'd feel the same way, and I probably wouldn't do it. I might investigate how much it would cost at the other hospital--or whether I could get my insurance company to cover it, given the circumstances. I probably wouldn't bother going through it all again if I didn't feel I could afford the expense and my insurance wouldn't pay.

You seem to understand a lot about what happens to your heart rate when you rise, when you walk, etc. without your beta blockers. Your symptoms sound very much like my symptoms, and I've been diagnosed with POTS. I don't take my blood pressure; I don't have a clue what it does day to day, hour to hour, position to position. I only know sometimes I feel like crap and sometimes I don't. When I do, I take certain measures and then I feel better.

I don't think you've mentioned in your posts whether you do any of the non-pharmacalogical treatments for your condition--the most common, which you can read a lot about on this site, are drinking 2 1/2 liters of water (or electrolyte drinks help a lot) a day, three to five grams of salt a day (1 teaspoon = 2.4 grams), and wearing high compression hose, thigh-highs or to the waist. If you're not doing these things along with your beta blockers, you may want to start. YOu may also want to inquire about taking midodrine or florinef along with the BB. Some people take these meds in combination, some don't. (Those other meds help with venous constriction and blood pooling, which is why your heart is beating faster to compensate.)

The book you wrote about sounds fascinating, and I will check it out and probably buy. I absolutely believe that biofeedback and meditation can help, though I've yet to pursue those alternative treatments. I will say, however, that the neurologist who read my recent sleep study wants to me to join a study ... do a whole bunch of autonomic nervous system tests and then teach me to meditate in a certain way and then a few months later test me again. She strongly believes such action can affect our pots symptoms--she kept telling me how much pots patients will benefit when she gets her article published. I will probably do it in the next few months.

By the way, I don't at all think that your doctor is "blowing you off" or that he thinks you're a nut -- it doesn't sound that way to me at all.

I think that's everything -- take care!

Merrill

[Ernie]

Hi Carol,

It depends how much money you can afford to put on a new TTT in a different hospital. If it is within your budget then go for it. Otherwise, you might consider going back to the same hospital. Make sure that they follow the right protocol and that they have a doctor present during the TTT.

I don't think your doctor thinks that you are nuts because he would not have suggested that you redo the TTT.

What was his interpretation of your first TTT?

I agree that you should redo the TTT while you are weened for the BB.

Good luck

Ernie

[POTSMama]

Thanks all - - I will digest all this advice and move forward. Actually, after I got off the phone with my doc, I realized he never did say what he saw in my first TTT (so I'll ask when I see him in 2 weeks as maybe there's some info in there). And my husband stopped by Barnes and Nobles bookstore and bought that book on his way home today - - I've glanced at it, and it may be useful. I do believe I have POTS and that it's a physiological condition, but I also do think that calming your system and meditating, etc., can help - - because I don't know about all of you, but there is no doubt that some of my episodes are triggered by my being upset about something or having a crazy day. I'll let you all know what happens down the line sometime! This is a great group!

Carol

[blackwolf]

Dear Carol, I can understand your anger and confusion. But I would like to add this. For over 7 years I have been suffering from Fibromyalgia. There have been only a few drugs that really cut the pain.(demoral, morphin, darvocet) I'm allergic to most of the others. My one and only trial for a daily med. ended in the hospial after a violent reaction(celabrix sp?). I've tries Vioxx and almost everything else out there. And YES even pot! No luck. My trial with corison went just about as well, I ended up sick to my stomach. To make a long story short(too late), I have resorted to ice, asprin, and meditation. I have my room and my time to do it. Regular, every day( I know that sounds hard) meditation and relaxation does help. Good Luck

Blackwolf

P.S. I know this sounds funny, have you ever tries counting to ten, or twenty.

[Dawg Tired]

Carol, I'm SO sorry to hear you are going through all of this. When I started having problems we were living in Billings, Montana. There wasn't any doctors arount there who could help me but I did have a reasonably good TTT done at one of the hospitals. It was done with an EP in the room the whole time and they used nitro to challenge. After the test when I had been lying down talking to the tech for about 10 minutes my BP suddenly fell to 50/0 . He panicked because he had just dc'd the IV. It came back up but I thought it odd and to this day have no explaination for it. We looked in Colorado for a specialist in dysautonimias but could not find one. I have been to Vandy and was impressed with the staff; they really try to help and for once I felt like someone was taking me seriously. We have now moved back (home) to Missouri and I have 2 GREAT doctors. I wish I could clone them for the rest of you! I intend to get a copy of the book - it sounds interesting!

[Michelle Sawicki]

A lot of people get a chuckle when they read the following paragraph on our "What to Avoid" page, but it's there precisely because I hear stories like yours all the time:

Doctors who don't know much about POTS will surely leave patients feeling frustrated. Patients of inexperienced doctors may not receive expert care and may not return to optimum health. Finding an experienced physician is not only desirable, it is a necessity. Physicians who treat dysautonomia can be located on our Physician List.

My advice is always to see a specialist. Even if it costs you a few extra bucks, the peace of mind is priceless.

Michelle

[Deb]

Hello Carol,

I'm not going to address all of your concerns, but I wanted you to know that I have read about using biofeedback to help control not only heart rate, but also blood pressure. I think that book sounds very interesting! I will probably buy it, too.

As for your Doctor thinking you're a wacko or whatever, I didn't get that impression when I read your posting. It sounded to me like he is truely interested in helping you.

I don't have an opinion as to whether you should or shouldn't have the TTT again. I can tell you that it costs about $2000.

Like you, I've also experienced wide swings in blood pressure and waking up at night feeling dizzy and spacey, and the horrible adrenaline rushes at the least provocation. What my doctors have recently discovered is that I am highly sensitive to medications. Even more so than they first thought. I have side-effects to medications that almost no one has. This has contributed to my body over-reacting to things. I've always had a super-sensitive nervous system, but the POTS made it worse. So when I went off of my medications (which I did one at a time), I was much worse for quite a while, but then I got much better. I wanted to tell you this because I've noticed that many of the people who write on this forum have written that they are sensitive to medications, and you may very well be too. It took me weeks to recover from going off of the meds. It may be that your body needs a little longer to get back into rythym, so to speak. I would be inclined to take your doctor's advice and stay off of the beta-blocker until you see him again.

In the mean time, if you aren't already drinking loads of water and adding extra sodium to your diet, you probably should do so. It's amazing how much better I am just by drinking more water and adding a teaspoon of salt to my regular diet.

I hope that you find some answers and start to feel better soon!

[opus88]

Carol,

While I have not personally read the HeartMath book, I have heard really wonderful things about it. (Actually, I think I bought it a couple of years ago but never got around to reading it! I'll have to check my shelves when I get home.) Whether you have POTS, NCS, diabetes, asthma, arthritis or even NO health trouble, biofeedback is an excellent tool.

As for the salt, if you use properly processed (almost completely unprocessed) Celtic sea salt instead of table salt, it has the synergistic nutritional qualities still with it. Regular table salt is processed until it's dead or almost dead, then synthetically beefed up again. I've seen a positive change since starting on the sea salt a few months ago.

Good luck - keep us posted on what you decide!

[WifeofPotsMan]

Carol,

In looking for doctors to help my husband we probably saw - no lie, a dozen cardiologists. It wasn't until we went to the Cleveland Clinic that we could be properly diagnosed. My husband had a TTT by a previous cardiologist that had determined the test was inconclusive. I don't know what your financial situation is & I'm not asking. I know that you can't put a price on your health, but your wallet will certainly try.

I won't begin to tell you what to do. You must follow your own instincts. I will tell you what I've learned. You can't take information in on your doc visit and expect him to truly evaluate the contents. I find that sometimes their arrogance alone won?t allow them to do that. If I have something I want them to think about and consider, I send it via fax or mail a week before my visit with a cover letter.

Take what you can from the doctor you are seeing. If you don't feel like he has guided you well, see another physician. We are seeing a cardiologist that doesn't "specialize" in POTS, but he's willing to learn and is actively seeking answers. Does that take the place of a specialist ? no. But sometimes a doctor that is willing to learn and try to help is just as supportive as the specialist.

Listen to your gut. After my husbands "inconclusive" TTT, the cardiologist that we are seeing now repeated the test in his OFFICE. Yes, he has a TTT in his office so we didn't have to pay any additional co-pay or deductible. Just our normal co-pay. That may be an option for you.

Finally, you know your body better than any doctor. If your gut tells you the guy doesn't have it right, he probably doesn't. I have learned that on this "health journey" that I've been on with my husband, we learn what we can from each doctor. We take things not too seriously when we can and most of all I trust his gut & I'm his advocate. That's one of the most important things I can tell you. It's always helpful if you can have someone else accompany you to your doc visits. Again, your health is the one thing that money can't buy.

[POTSMama]

WifeofPotsMan,

Thanks so much for your wise advice - - I especially like your idea of sending a few key articles/info on how to interpret TTT for POTS into my doctor in advance with a cover letter politely asking him to look it over as additional info I came across (I'll print out and mail it all this weekend so he has that before he has my TTT results and then sees me again). That makes a lot of sense and I do think he'll be more likely to look it over (egos are always involved in these things).

As an update to all, my doctor told the insurance company I'm only going to get a proper test done at the other hospital and it looks like they are going to cover it. I hate to bother doing it again, but at the same time if my cardio is willing to consider the results as possible POTS or NCS signs (I have sort of a mixed bag of symptoms for both, but I think it's POTS while my cardio keeps saying he's leaning toward NCS), I'm willing to get a "real" test and see what it shows. This one will include Isuprel too. Now the only problem will be if it's "negative", as my symptoms come and go from day to day sometimes and I wonder if it will show up that day.

And yes, I'm staying off betablockers as I tried a measly 1/4 of a pill a couple days ago (1/8 of my former dose of a few years ago!) and my blood pressure and pulse dropped out drastically, so I think I indeed may have become too sensitized to it. I am doing the increased liquids and salt and ordered a pair of the supportive hosiery and starting a mild exercise program and getting more sleep. And I have read half the HeartMath Solution book - - it is a decent book that's basically a kind of meditation/imagery thing. I think it's probably good for helping calm overreactive emotions and Type A behavior (which I admittedly have) but I don't think it will fix all my symptoms. I'll decide after my retest and visit with my doc if he is willing to work with me on this adequately or not - - I'd love to go see a specialist but that would require flying to Ohio or Vanderbilt, both quite a ways from Colorado - - I have the frequent flyer miles to do it, but leaving my two girls who are under age 5 is the problem, as my husband works full time and goes to school part time and we don't have anyone who could easily move in and stay with them. Still, if things don't improve and I can't find the help here, we'll find a way, as I have become really debilitated in just one month with this thing!

Thanks again, everyone!

Carol

[EarthMother]

Sorry about the frustration with the TTT. It seems your path is to enlighten those you encounter and it sounds like you are the perfect person for the job. Sorry if this wasn't the job you were looking for ;-) and geniune empathy your way, for I know how hard this is.

I remember talking with folks at the heart math institute years ago. ... I think there is something more here than traditional "relaxation". Goodness I am the guru of relaxation techniques, and I know it is not sufficient to overcome this disorder on their own.

But what science is finding now is the neural plasticity of the brain and how the mind/brain can work to physically change neural networks in our bodies. I think the heartmath institute taps into some of these ways we can "reprogram" our autonomic nervous system.

I've been doing some Somatic Experiencing work and other "bodywork" that involves eye movement that crosses the left/right brain channel through a licensed MFT who has specialized in this field. It's cool stuff and I think beyond all the cognitive or behavior therapy I've tried, the concept of actually reprogramming the neural networks and in some way healing this deep trauma that our body has endured sounds promising. At the very least it's something interesting to try.

Good luck to you on your path. Thank you for sharing with us. We each learn so much through the travels of our POTS penpals.

EM

[avais1]

Thank you for opening this subject! I do not feel that your doc was "blowing you off". My Neurologist is Dr. Phillip Low, at Mayo, and specializes in POTS. Even Dr. Low suggested biofeedback to me last year. Keep in mind, I am only sharing what worked for me, and am in no way advocating any form of treatment, etc. Here are a few books and tips that I have tried:

1) Hope and Help for your Nerves: by Claire Weeks. The book is a little old fashioned, (it was written in the late '60's) but boy, was she dead on about autonomic nervous symptoms and how they relate to stress. Let's face it, these dysautonomias are enough to drive even the strongest mental warriors over the limit. For those of you who have anxiety attached to your POTS, etc., this book was a life saver for me. It really helped me gain control over the anxiety part, and while the POTS still hits, it is not as bad, as I can keep the natural anxiety that goes with it under control.

2) Guided Imagery - Bellaruth Naparstek. This book didn't work for me, but many people swear by it. Bellaruth is the pioneer in the Guided Imagery field.

3) Yoga - breathing techniques. I practice these during my most severe bouts of nausea. They do seem to work.

4) YAZ exercises - these are positioning exercises for people who are positionally or motion sensitive. They REALLY DO WORK!

5) Biofeedback - I have trieed it. For me, if I am having stress induced POTS, it really does help. But I do find that if I am "too far gone" into an attack, I can't maintain it.

Dr. Low did give me some good "off the cuff" advice: Stay as calm as possible. The nervous system has a way of remembering things. If you can "teach it" to react calmly, over time, it probably will.

Good luck to all of you.

Robyn

[nantynannie]

Hi Carol!

I hope I did not give you bad advice when I said that your doc probably thinks your nuts...since no one else took it that way, I was probably just projecting my experiences on to you. Many of my docs think I'm crazy!

By the way, I have had good results with hypnosis (kind of like biofeedback) for behavior modification. I did not have sucess with it for health related issues though. Please let me (us) know about the book and whether you get any good tips or info.

Take care,

Ann