perfectenemy
07-15-2008, 01:36 AM
I'm an 18-year-old college student with a rather long list of health problems. The most recent of these problems is tachycardia. The first episode I can remember was when I was in high school, probably at 15 or 16. Since then, I've had 10 or 15 episodes where my heart rate can range anywhere from 130 to 200. It pounds hard and can be accompanied by headaches, dizziness, weakness, confusion, and body temperature fluctuations. My usual resting rate is mid to high 60s. I do have problems with anxiety, but during these episodes I don't feel panicked or anxious. These attacks seem to start when I'm moving around (showering, walking, climbing stairs) and can last an hour or a day. I've tried the techniques my PCP suggested (bearing down, etc), and nothing seems to work. The only way I've found I can get relief is to take a Klonopin wafer (.25 mg). It usually knocks me out, and when I wake up my heart feels fine.
I've had EKGs, echocardiograms, and a holter monitor. I'm currently trying a 30-day event monitor. None of the tests thus far have showed anything, and my doctor's most recent theory is hormones. The only correlation he's been able to find is perhaps hormones. Several of my episodes have occurred while I was premenstrual, and seemed to dissipate when my cycle started (chest soreness and headaches can hang around for a few days).
Not only do I have this problem (which, frankly scares the crap out of me), but I have a host of other problems that may or may not be related. I have migranes, low fluid volume, orthostatic hypotension/vasovagal syncopy, asthma, allergies, IBS, chronic gastritis, and...I feel like there's something I'm missing. Oh well. Anyway, I should also note that, though I have been diagnosed with these conditions, I have never had a piece of paper in my hand with test results that say, "Yes, you have ____." Even my allergy tests show up negative, though I am very clearly allergic to things like pollen and dust.
I'm just looking for another opinion. Maybe there's something my PCP, old pediatrician, or I am missing. I'm really getting tired of getting told, "yeah, we don't know what's wrong with you. Just wait until it happens again, then we'll talk about it." My heart issues seem to be getting worse (higher rate, more frequent), which is also more scary. I'd appreciate any help I can get. Thanks in advance.
I've had EKGs, echocardiograms, and a holter monitor. I'm currently trying a 30-day event monitor. None of the tests thus far have showed anything, and my doctor's most recent theory is hormones. The only correlation he's been able to find is perhaps hormones. Several of my episodes have occurred while I was premenstrual, and seemed to dissipate when my cycle started (chest soreness and headaches can hang around for a few days).
Not only do I have this problem (which, frankly scares the crap out of me), but I have a host of other problems that may or may not be related. I have migranes, low fluid volume, orthostatic hypotension/vasovagal syncopy, asthma, allergies, IBS, chronic gastritis, and...I feel like there's something I'm missing. Oh well. Anyway, I should also note that, though I have been diagnosed with these conditions, I have never had a piece of paper in my hand with test results that say, "Yes, you have ____." Even my allergy tests show up negative, though I am very clearly allergic to things like pollen and dust.
I'm just looking for another opinion. Maybe there's something my PCP, old pediatrician, or I am missing. I'm really getting tired of getting told, "yeah, we don't know what's wrong with you. Just wait until it happens again, then we'll talk about it." My heart issues seem to be getting worse (higher rate, more frequent), which is also more scary. I'd appreciate any help I can get. Thanks in advance.
Sponsor
aether4
07-15-2008, 03:13 AM
You need to do more research on vasovagal syncope, by doing so you'll find your answer fairly easily.
With those that have vasovagal syncope (also called neurocardiogenic syncope, neurally mediated syncope/hypotension) there can be other parts of the body that get the faulty signals other then just your heart and vascular system - such as your digestive tract. For many of us (and many are young women when this starts), being premenstrual means an increase in symptoms - I've actually had flushing around this time, feel weaker/more fatigued, more confused, and have had near-syncope while sitting down. Drinking even more fluids and increasing salt more around this time has helped.. a little.
If you research this you'll come across the terms "dysautonomia" and "autonomic dysfunction". There are several conditions within this, vasovagal being one of them. What it basically means is that your autonomic nervous system isn't working the way is should. Other terms you should look up are POTS (postural orthostatic tachycardia syndrome) and Orthostatic Intolerance. Lots of seemingly unrelated health problems are common in those with dysautonomia, including odd allergies and sensitivities. The migraines can also be directly related to the low blood volume, hypotension, and generally poor circulation to the brain.
You need further testing and if you're not being treated, then doctors who will treat you as it sounds like your problem definitely is not resolving itself. Mayo clinics, Vanderbilt, and John Hopkins all have autonomic labs, and if you look around you may find other hospitals with them. There are also some great sites for information, you'll probably uncover them with searching.
Also go to the "Rare Disorders" section of this forum. Click on "Search this board" and put in "neurocardiogenic syncope", there are several threads including an old one that is 37 pages long and very helpful.
Just to add - I get tachycardia, too, whenever I stand and fairly often when sitting upright - resting (supine) heart rate is completely normal in the 50s-70s range. The tach I get is directly due to low blood pressure and volume, and blood pooling. So far my doctor only has me on midodrine, which helps some.
If you use an rescue inhaler for your asthma you should be careful (and preferably sit down) as the inhalers can cause your heart rate to increase.
With those that have vasovagal syncope (also called neurocardiogenic syncope, neurally mediated syncope/hypotension) there can be other parts of the body that get the faulty signals other then just your heart and vascular system - such as your digestive tract. For many of us (and many are young women when this starts), being premenstrual means an increase in symptoms - I've actually had flushing around this time, feel weaker/more fatigued, more confused, and have had near-syncope while sitting down. Drinking even more fluids and increasing salt more around this time has helped.. a little.
If you research this you'll come across the terms "dysautonomia" and "autonomic dysfunction". There are several conditions within this, vasovagal being one of them. What it basically means is that your autonomic nervous system isn't working the way is should. Other terms you should look up are POTS (postural orthostatic tachycardia syndrome) and Orthostatic Intolerance. Lots of seemingly unrelated health problems are common in those with dysautonomia, including odd allergies and sensitivities. The migraines can also be directly related to the low blood volume, hypotension, and generally poor circulation to the brain.
You need further testing and if you're not being treated, then doctors who will treat you as it sounds like your problem definitely is not resolving itself. Mayo clinics, Vanderbilt, and John Hopkins all have autonomic labs, and if you look around you may find other hospitals with them. There are also some great sites for information, you'll probably uncover them with searching.
Also go to the "Rare Disorders" section of this forum. Click on "Search this board" and put in "neurocardiogenic syncope", there are several threads including an old one that is 37 pages long and very helpful.
Just to add - I get tachycardia, too, whenever I stand and fairly often when sitting upright - resting (supine) heart rate is completely normal in the 50s-70s range. The tach I get is directly due to low blood pressure and volume, and blood pooling. So far my doctor only has me on midodrine, which helps some.
If you use an rescue inhaler for your asthma you should be careful (and preferably sit down) as the inhalers can cause your heart rate to increase.
perfectenemy
07-15-2008, 08:49 PM
...Wow. Thanks for your help. I've done some researching around the internet into syncopy and autonomic NS disorders, but maybe I was looking in the wrong places or skimming a bit too much. I've got an appointment Thursday, so I'll mention something to my doctor about it then.
As far as premenstrual problems go, I am currently experiencing every single symptom you just listed. Bah. I'm starting to doubt the proficiency of my doctor.
I'll read around this site and Mayo Clinic, etc. sites about it. Is there anything specific you'd recommend?
And yes, my Albuterol inhaler really messes with my heart rate. But my pediatrician told me that was common...
Again, I really appreciate it. I had a feeling I was going to get a good response from these forums.
As far as premenstrual problems go, I am currently experiencing every single symptom you just listed. Bah. I'm starting to doubt the proficiency of my doctor.
I'll read around this site and Mayo Clinic, etc. sites about it. Is there anything specific you'd recommend?
And yes, my Albuterol inhaler really messes with my heart rate. But my pediatrician told me that was common...
Again, I really appreciate it. I had a feeling I was going to get a good response from these forums.
aether4
07-16-2008, 02:57 AM
I had a feeling I was going to get a good response from these forums. That was pure luck, honestly as these conditions are considered rare and there are only the occasional few around these forums. I hang around here because of questions like these and because, while people know plenty about high blood, usually low blood pressure and it's effects are sort of passed over.
I'm not sure how much luck you'll have with your doctor, but at the very least the NCS diagnosis should back up your claims. Did you have a tilt table test to diagnosis it? If so, do you have or can you get the records from it?
I'm sorry you're going through this. :( I would like to tell you that you'll get better - but after so many years already it may be unlikely that it will completely go away and stay away. Your goal, for now, should just be finding decent treatment and working on making yourself as healthy as you can with what can be fixed, and hope for eventual remission.
And one good thing, while your symptoms are bad there are people with these conditions who cannot even get out of bed, are wheel chair bound, or stuck with intractable migraines (constant). Be thankful that you have the functionality you do have.
I'm not sure how much luck you'll have with your doctor, but at the very least the NCS diagnosis should back up your claims. Did you have a tilt table test to diagnosis it? If so, do you have or can you get the records from it?
I'm sorry you're going through this. :( I would like to tell you that you'll get better - but after so many years already it may be unlikely that it will completely go away and stay away. Your goal, for now, should just be finding decent treatment and working on making yourself as healthy as you can with what can be fixed, and hope for eventual remission.
And one good thing, while your symptoms are bad there are people with these conditions who cannot even get out of bed, are wheel chair bound, or stuck with intractable migraines (constant). Be thankful that you have the functionality you do have.
perfectenemy
07-16-2008, 05:21 PM
Well, maybe once I become as well-versed on the subject as you, I'll start lurking around, too.
I have not had a tilt-table test. My pediatrician said that she might recommend it if the problem got worse, but it's definitely been worse since I stopped seeing her. Even if my current PCP doesn't think it's necessary, I want to get one done, anyway. The only problem might be getting insurance to pay for it... But I'll pay out of pocket if necessary. I want to figure out what's going on.
And at this point, that's all I want. I would almost rather them tell me I had a brain tumor than "yeah...we don't know." I know it sounds extreme and dramatic, but I'm sure you can at least somewhat relate to the frustration of never knowing what was wrong with you. Episodes are scary, I don't care what the doctor says. Even if it is something incurable, at least I can get reccommendations on how to manage and live with it.
And believe me, I know it could be much worse. I've watched several relatives struggle through different conditions and I am thankful that I can still be up, moving around, working, and going to school. Even if it is hard at times. Thanks again and good luck with your health issues, too.
I have not had a tilt-table test. My pediatrician said that she might recommend it if the problem got worse, but it's definitely been worse since I stopped seeing her. Even if my current PCP doesn't think it's necessary, I want to get one done, anyway. The only problem might be getting insurance to pay for it... But I'll pay out of pocket if necessary. I want to figure out what's going on.
And at this point, that's all I want. I would almost rather them tell me I had a brain tumor than "yeah...we don't know." I know it sounds extreme and dramatic, but I'm sure you can at least somewhat relate to the frustration of never knowing what was wrong with you. Episodes are scary, I don't care what the doctor says. Even if it is something incurable, at least I can get reccommendations on how to manage and live with it.
And believe me, I know it could be much worse. I've watched several relatives struggle through different conditions and I am thankful that I can still be up, moving around, working, and going to school. Even if it is hard at times. Thanks again and good luck with your health issues, too.
aether4
07-16-2008, 11:02 PM
I have not had a tilt-table test. My pediatrician said that she might recommend it if the problem got worse, but it's definitely been worse since I stopped seeing her. Even if my current PCP doesn't think it's necessary, I want to get one done, anyway. The only problem might be getting insurance to pay for it... But I'll pay out of pocket if necessary. I want to figure out what's going on. How did you get a definite diagnosis of vasovagal syncope, then? My cardiologist diagnosed me based on symptoms but wanted a test to back that up before officially putting that in my medical records.
A bit if warning though, for me the tilt table test was awful. Mine only lasted around 25 minutes, too. Other hospitals can have theirs for up to 45 minutes. I was symptomatic at 10 minutes and eying up the trash can across the room at 15 minutes - sure that I was going to be warning the doctor any minute to go get it as I became very nauseous. I did make it through the full 20 mins, was given a nitro tablet and had one of the worst syncope episodes I've ever had shortly after. I actually didn't know where I was when I woke up, mumbled something incoherent, and ran into a wall shortly after while being led from the room.
You will get an IV line put in, and depending on the hospital you may get a medication to make you faint through that and if you're lucky you'll get fluids given to you afterwards to help you recover better - I wasn't and wish I had asked for them now as I was sick for the rest of the day and several days afterwards. You'll also not be able to eat or drink anything for several hours before the test, so expect to feel awful if you dehydrate easily (due to the low blood volume).
Cost will vary. Mine cost around $800 for the test and the doctor's fee, but cost of living around here is cheaper then other parts of the country. I didn't have any blood drawn during my test - better hospitals and clinics will do that to actually check blood catecholamine levels.
Your PCP may not be able to help you much, but hopefully is willing to listen and refer you to doctors that can. I can understand wanting an answer, and honestly you have been halfway given one but sadly it seems no one ever explained anything to you - or at least not very well and how much this could affect you. :(
In the mean time try to keep up fluid intake and eat more salt as you need more with the low blood volume, try compression hose if you can (30-40 compression), and be very careful in the heat. Good luck hunting down the help you need! :)
A bit if warning though, for me the tilt table test was awful. Mine only lasted around 25 minutes, too. Other hospitals can have theirs for up to 45 minutes. I was symptomatic at 10 minutes and eying up the trash can across the room at 15 minutes - sure that I was going to be warning the doctor any minute to go get it as I became very nauseous. I did make it through the full 20 mins, was given a nitro tablet and had one of the worst syncope episodes I've ever had shortly after. I actually didn't know where I was when I woke up, mumbled something incoherent, and ran into a wall shortly after while being led from the room.
You will get an IV line put in, and depending on the hospital you may get a medication to make you faint through that and if you're lucky you'll get fluids given to you afterwards to help you recover better - I wasn't and wish I had asked for them now as I was sick for the rest of the day and several days afterwards. You'll also not be able to eat or drink anything for several hours before the test, so expect to feel awful if you dehydrate easily (due to the low blood volume).
Cost will vary. Mine cost around $800 for the test and the doctor's fee, but cost of living around here is cheaper then other parts of the country. I didn't have any blood drawn during my test - better hospitals and clinics will do that to actually check blood catecholamine levels.
Your PCP may not be able to help you much, but hopefully is willing to listen and refer you to doctors that can. I can understand wanting an answer, and honestly you have been halfway given one but sadly it seems no one ever explained anything to you - or at least not very well and how much this could affect you. :(
In the mean time try to keep up fluid intake and eat more salt as you need more with the low blood volume, try compression hose if you can (30-40 compression), and be very careful in the heat. Good luck hunting down the help you need! :)
gillyann
12-18-2008, 10:20 PM
My mum has pots and beddridden with low blood volume ,she has only 50%She has been beddridden for 5 years she suffers from a tight chest,breathlessness,bad pooling in her stomach and her heart over works all the time.She cant even sit for 1 minute.She is taking Fludrocortisone 0,2mg and next week she is starting on epo 10.000 units to increase the red blood cells . Is there anyone else in the same position or on these medications? I am praying to get her so much better,she has no quality of life at all.