If It Looks Like A Duck And Quacks Like A Duck ...

[autumn]

... then it's probably not a horse. That's what my doctor said when she diagnosed me with POTS based on my symptoms, medical history and a tilt test that was borderline to positive (they hooked me up and tilted me without giving my heart rate a chance to settle to it's baseline, so it was artificially inflated when we started, thus affecting what would've been a straight positive).

So she sent me to BIDMC for a confirmation, and I'm still waiting to hear back on the results, and I'm kind of nervous. I had been sick for days, but I had a random good day then, and my tilt numbers weren't nearly what they were before; I hit 122 in the first minute and then bounced around from 87 to 114 with a starting rate of 88. It seemed weird to me that the numbers were all over the place, up and down, changing every minute, but whatever. They ran some other tests, and I don't know what those showed, but I'm terrified the doctor is going to say nothing is wrong. I know they have a copy of the first tilt, though, which had me maintaining in the 120s and shooting higher after nitro. The BIDMC tilt didn't involved drugs. The tech said there's always the option for more testing, but I don't know what that would entail.

Of course, that night, I had a 30-second or so episode of ventricular tachycardia, and the next day, after a hot shower, I had a 10-minute episode of v-tach and SVT. I was off my meds for the testing, and when I'm not on them, I get those episodes after showers. I had taken them the night after the test, but I guess it wasn't enough to help in the morning. The combination of standing and heat makes for a bad situation even on normal days, so off meds, it gets a little hairy.

Anyway, is there a chance that a good day, and therefore better test results, will mean the specialist is going to say I'm fine? My new doctor told me not to worry, that obviously something is wrong, and we'll keep looking for answers if that happens. I just thought I was finally making progress with regard to answers when I got the diagnosis.

I've been sick since I was little and have had more tests than I can possibly count. I've been diagnosed with idiopathic ventricular tachycardia and inappropriate sinus tachycardia, and I have documented episodes of SVT. I've got IBS, GERD and untested but "likely" colonic inertia. I have visual disturbances and vertigo. I've been in physical therapy for myofascial issues, and it turns out I've got hypermobile joints, too. I've been tested for Lyme, rheumatoid arthritis and mono more times than I can count because of my symptoms; I did actually have mono once, though most of those tests came before I actually had it. There are no known causes for any of the above: my heart is structurally fine, my GI system looks fine, eye specialists haven't found an answer for the visual things, and no one knows what the deal is with the vertigo. I'm so freaking tired all the time, and I honestly thought I was losing my mind because of the brain fog.

My vision has blacked out at the gym if I'm doing upright cardio, such as using an elliptical, but I can ride the bikes there with fewer problems. If I'm standing and cooking, my heart rate easily gets into the 120s, 130s. It often hangs around 110-130 when I'm standing; my resting heart rate is probably close to 80-85, which the tech at BIDMC said was high, which can complicate a POTS diagnosis, I was told. Stupid things send my heart up, and I used to think it was because I was weak or out of shape, but all my cardiologists -- and there have been many -- said I'm in great shape, not to worry, that this stuff is normal ... until my electrophysiologist put me on another heart monitor earlier this year. I had sinus tach every day, getting into the 150s, 160s, and he asked what I was doing then. When I told him nothing -- looking at the charted times for when this happens, it's usually when I was up and around getting ready for work or when I just got to work and walked up a flight of stairs -- he said that maybe I just need to chill out a bit. Stress is really not the problem here.

I'm sorry that was so long, but I'm so confused. Any words of encouragement or advice would be appreciated. My doctor has me set to start on IV fluid therapy, but I have a call in to her to ask whether we should wait for answers from BIDMC, since who knows what they'll say after that testing.

[firewatcher]

Autumn, welcome to our autonomically dysfunctional family! I am sorry that you are here, but happy that you found us all!

I am shocked that your new doc is as knowledgeable and supportive as he/she is; where did you find such a gem?! Hang in there and use the search function to your quickly beating heart's content. Let us know what your "official" dx is!

We are all here for each other, so be at ease and be welcomed!

[comfortzone]

I don't have much to offer in terms of advice but I just want you to know that I'm sorry it's taken so long to have the docs get to the bottom of this for you. It's true that docs are an intelligent lot as a rule - but they gain much by 'on the job' learning....much more than they likely care to admit - especially when it comes to rare disorders. It will be frustrating for sure - but if you take a deep breathe of patience - you could be the one they learn quite a lot from. They can't know everything -- and sadly it doesn't work that they have experience in these rare things so know what to do very often. So hopefully though -- as they begin to tune into things such as POTS -- you can be learning much on your own -- from books and from here. Dr. Tinkle has a good book out called The Joint Hypermobility Handbook - it's excellent because each chapter tells about all the body systems and how they can be effected by this Syndrome (hypermobility syndrome or EDS/HM). He even talks about how to talk with your doctor, disability issues, raising kids with it, or raising kids when you have it. I'd just heed your doc who says don't worry - something's wrong. If that medical center doesn't find it - someone else will. Frank V-Tach is not anything I've heard of being "let alone" - ventricular dysrhythmias can be deadly. SVT not such a big deal - and can be treated by a few options. So hang in there & be persistent. Sounds like you are on the right path with doctors paying attention....if it isn't this round of testing that has you with matched with a knowledgeable clinician - then press on till you find one who knows what they are dealing with. Good luck!

[autumn]

Thanks for the warm welcome. I'm a longtime lurker.

Firewatcher, my doctor actually has three other patients with POTS. I just moved to a new area and needed a B12 shot, and I happened to walk into the right office. She took one look at my history and asked whether I had POTS; my history basically mirrors those of her other patients. She did say I'm the worst cardiac case, though. I have a friend with POTS -- she told me about this board, actually -- so I was familiar with it when the doctor mentioned it. It's a relief to find someone who's looking further into this.

Nowwhat, they leave my v-tach alone for now, other than treatment with verapamil, because it's idiopathic and polymorphic, so it's not as dangerous, they said. They can't induce it, so they can't ablate it. My heart is structurally fine, so they said the risk of it deteriorating into v-fib is slim to none. I've had v-tach for about 10 years now. Verapamil keeps the episodes nonsustained, under 30 seconds -- except for the other day, but I guess I hadn't been on it long enough again. The SVT is annoying only when it's mixed with the v-tach, really. My boyfriend used to be a paramedic, and he couldn't count it the other day. He said it was well over 200, but other than that, he didn't know. It was the fastest he'd ever felt. And then it suddenly stopped, and I was back in the 80s. My heart issues and fatigue, which is usually caused by my heart issues, are the worst parts of whatever this is.

I'd guess that if everything else has checked out, it's likely some kind of autonomic response that's triggering these arrhythmia episodes, including the inappropriate sinus tach. I didn't see the doctor when I was tested, and I'm looking forward to picking his brain. If he decides the tests were normal, though, it'll be a lot longer till I get an appointment to see him.

[Sarah4444]

Hi autumn-

I don't know if this will help, but I also have strange tachycardia issues. I kind of divide them into two categories - I get the "regular" POTS tachycardia when I stand up and move around, which can be anywhere from 100-150 bpm or so. But I also have episodes where I can feel a strange, uncomfortable feeling in my chest and my heart rate goes up to around 200 (and my bp drops). I caught one of those when I was wearing a loop monitor and my cardiologist said it was an episode of heart block (a P wave conduction abnormality?). However the episode I caught was a very brief one, so he didn't get to see much of the very fast tachycardia.

I find I can usually avoid "clunking" over into the heart block episodes if I stay well hydrated, change positions slowly, and breathe in as I bend over or get back up. If I forget and quickly bend to do something like catch a glass that falls off the counter, I am likely to start one up.

I don't know if this helps at all or how it fits in, but welcome. I was also terrified that my body may have not cooperated on the TTT, but apparently it did - now I'm having trouble getting to why I have POTS... It seems like a very slow process, but your doctor sounds great. Did she suggest IV fluid therapy or did you? I asked my cardiologist about it and he laughed at me.

Sarah

[autumn]

Sarah, they definitely feel different for me, too. There are things I do that I know are more likely to induce a PVC, such as leaning over, but the only thing I've done that I can consistently associate with longer v-tach/SVT episodes is go off my meds and then take a hot shower. The doctors have never caught the long episodes on a monitor -- there have been four, but I was usually on meds -- so I expect that at some point, I'll be put on a monitor and taken off the verapamil for a little while. The monitors have gotten a few seconds of the v-tach, though. Off meds, the vtach was at a rate of about 265 bpm, I think; on meds, it was 114. All this stuff is a separate matter, at least in feeling, from my inappropriate sinus tach/possible POTS.

[lieze]

Hi autumn, I just want to encourage you.

You sound like you're doing great and have a wonderful attitude about all of this.

I have a new friend who has POTS and she says the reason why she thinks she has done as well as she has is she has kept very very active.

She said she used to run, and then when she couldn't run any more she walked.

She was diagnosed in her 20's due to the fact that her pupils were different sizes, and she is in her 50's now.

She is just now starting to slow down a bit and question how much to push herself because she is noticing more symptoms especially when she works her 12 hour shifts.

Thanks for the tips on bending Sarah I'll try that.

[autumn]

Thanks, Lieze. It wouldn't shock me if another doctor said everything was normal; that's usually how this goes for me. I mean v-tach certainly isn't normal, but doctors will brush it off if they can't figure it out. I was really active earlier this year, going to the gym every day, doing longer cardio workouts, even upright. But then I got really sick in April with asthmatic bronchitis, and it totally depleted me. When I tried going back to the gym, my heart rate would get too high too fast, my vision would start to go black, I'd start skipping heartbeats, and I'd have to stop. My energy has been gone pretty much since that illness. It's pretty frustrating.

The things our pupils can do always amuse me. Before my PCP diagnosed me with POTS, she asked whether people have ever asked if I'm on drugs because they see my pupils randomly dilate. I was so surprised she knew! I had asked all my doctors over the last year what medicine could cause that, and no one had an answer. Duh: It's probably my autonomic nervous system! It really freaked out one man I worked with, and I remember him pulling me aside and dropping his voice to ask if I was on anything because of how wide they were, even in the light.

[lieze]

Mine too I can gauge how I'm feeling usually by the size of my pupils.

When they are big and open I usually feel pretty good.

Try not to let that set back discourage you. Take it slowly and work back up to what you can do. I am amazed that I have recovered as much as I have even though I feel pretty crappy at times, but we are young and I think it is possible that we make progress despite these issues we are dealing with.

In fact it's the best thing for our hearts to try to strengthen them just not to overdo it I guess. When I was released from Cleveland Clinic they told me to go home and eat (they thought I was too skinny) and exercise. They wanted to put me on a good work out program. Well for me that's just doing normal things and I am ashamed to admit that I feel scared and worry that I won't have the strength to do normal things and collapse. I guess it won't happen that way. I'll get tired and have to stop most likely I doubt that I'll just keel over-I haven't so far anyway.

I was not diagnosed with POTS or dysautonmia while I was there. I was having SVT's and they did my ablation, ran a battery of tests based on the symptom I was complaining of and couldn't find anything wrong with me which was the good news. The bad news was I didn't feel my self and haven't since chicken pox in '08.

One day at a time. Your story was an inspiration with what you go through with your heart and you sound so upbeat about it.

More power to you.

[jem15]

I know what you mean, about finally feeling like you may have an answer, but then being afraid that if the testing was borderline you'll be back where you started again. That's kinda where I was... The doctor pretty much diagnosed me in his office based on symptoms and borderline heart rate increase. And when I went for the official tilt testing. I was one beat off from the "diagnostic criteria". So 29beat increase, instead of 30.

I'm struggling to get disability and was afraid this would hurt, cause in the report, the doctor wrote "suggestive, but not diagnostic of POTS".. to my face though, he said this is probably what I have and would pursue treatment in that area. He also wrote later in the report, there are "other factors that support the diagnosis, despite the less than definitive degree of tachycardia".. With the autonomic function test results, there are some patterns common to POTS, also I think based on symptoms and history, things like if your feet turned reddish/purple during the test, as well as associated things like having Mitral Valve Prolapse and sensitivities to medicines. All this paints the POTS picture he said. And the other doctor who diagnosed me, gave me a note, saying eventhough the testing was technically borderline, it's a clinical diagnosis based on several things, etc... and when he retook my heartrate at another time in his office, it came up 30, 32, so he added that in too.

Don't know if that info helps you, but figured I'd share, cause even before the tilt testing.. with the dr's in office borderline increase of 27-29, he already wanted to start me on Mestinon. So something to consider would be if the doctors dont have any other ideas, are there treatments they'd feel safe having you try, and seeing if you respond? Of course if you don't, it doesnt mean you dont have POTS. I havent responded to any treatments yet. But if youre one of the lucky ones who do respond to diet, exercise, meds.. maybe they can still try it without the exact tilt numbers.

Good luck!

[autumn]

Lieze, you're so sweet. Thank you. I'm 24 and have been dealing with this stuff practically for as long as I can remember. It was a shock to hear it's not normal, and every time I learn of something my body does that someone else's doesn't, it's so weird. This has always been how I operate. Now it's just a matter of finding out what's behind it and why.

Caterpilly, that's about how it went with my doctor. I was borderline without the nitro on my first TTT -- starting rate of 93 (though 80-85 was more accurate; they had me hooked up to the monitor and waiting for 15 minutes, and my heart rate stayed there. When the nurse practitioner came in, they started messing with me and strapping me in, so I jumped a bit, and then they didn't wait for me to level out before they tilted me) and 120/121 after 5 and 10 minutes. Once I got the nitro, I jumped to 151. My PCP used that tilt and all my symptoms to give me the dx, and she ordered IV fluid treatment. I haven't started yet, though. The home care group was going to set me up more than a week ago, but I haven't heard back. I also called the doctor to ask whether we should wait till I hear from the specialists (who seem to have a pretty mixed reputation, from what I can tell on this board), but I haven't heard back on that end, either. I'd like to avoid meds if I can; I'm already on so much.

[autumn]

An update: My doctor doesn't want to wait till we hear from the doctors in Boston, so I start IV fluid therapy today. If I feel significantly better, that could be an indicator, I suppose.

[autumn]

An update on Boston:

A nurse from my doctor's office called today to say she got the results from BIDMC, and they were borderline/abnormal. I can't even begin to express how relieved I am; I truly thought -- and feared -- they'd say I was fine. I can understand the borderline because I really was having a surprisingly good day when I had the testing, but it's good to know that even on a good day, they can tell things aren't quite right. I know this journey is really just beginning, but I can't help but feel as though I've reached the end of a very long road. I've spent my whole life, especially the last 10 years, having test upon test upon test and stumping doctors when the results came back perfectly normal. They'd tell me they knew something was wrong, but they couldn't find a source and so couldn't help me much. I'm just so thankful I finally have some answers.

Now I wait to hear from Boston about an appointment with the doctor.

[Rachel]

I hope that the test results will give your doctor good directions for treatment, and I hope that you will be able to see him soon.

All the best,

Rachel

[autumn]

Thank you, Rachel. I'm optimistic about what this all means. Some people don't understand why I'd be happy to have a dysautonomia diagnosis, but I tell them a name doesn't make my health situation any worse. If anything, it finally gives my doctors and me direction. I understand now why I have limitations that others don't have. I don't feel lazy or inadequate anymore, because I know this is something I can't will myself out of. I can stop fighting my body, accept it for what it is, and learn to work with it. I feel so much better about myself.

[autumn]

Another update: I was formally diagnosed with POTS today. My PCP said there's no doubt clinically, taking into account all my symptoms in addition to my two borderline tilts (each tilt showed a different set of issues, from what I can tell; my body's response wasn't the same). She even got to see my really dilated eyes today, which was just icing on the cake, really. I requested and got a script for florinef, though she said she hasn't had good long-term results with it. It might buy me a few months before I have recommit to IV fluids, she said, and we'll increase to twice a week then. She advised me to get a PICC, but I'll probably put it off for as long as possible and opt to get stuck twice a week instead. I asked her about my recent vein issues -- they're hard to find, hard to stick, move around a lot and are just generally "fragile," the nurses said -- and she attributed it to POTS taking a toll there. She said my diagnosis of inappropriate sinus tachycardia probably still stands, that it's not just POTS, but that my ventricular tachycardia is probably autonomic in nature.

And there you have it. Within three months, I had a doctor do what many more couldn't do in a decade: figure out what's wrong.