Help convincing Dr's

I'm a 23 year old female and I first fainted when I was 11. As far as I can tell I have an arrhythmia, mitral valve prolapse, and I've been told my blood vessels don't constrict properly and that's the cause of my fainting. I tend to only faint in the heat and I haven't in years because I've learned to manage it (and by manage it I mean miss out on half my life because of it). However it is still very debilitating as I live in the crevice of lucifer's butt hole and it's 80% humidity or higher year round and I faint if it's 80 degrees. Or if my shower is too hot. Or if I bend over. Without boring everyone with all the details, I'll just say the "overheating" (as I explain it to others) is truly debilitating. And it's been 12 years, going on 4 cardiologists, 2 primary care physicians, and an endocrinologist, 5 EKGs, 5 echo's, enough blood work to fill a blood bank, a 5 hour glucose tolerance test, 2 Holter monitor tests, an EEG, a pulmonary stress test, 4 different doctors testing my thyroid, and some weird medication to prevent sweating (that I never took) later... and the answers I have gotten are "drink alot of water and eat potato chips, don't have caffeine" "all your tests are normal, come back if you have a problem" "you have vasovagal syncope and there's nothing you can do for that" "there's nothing wrong with your heart besides the arrhythmia and mitral valve prolapse, go see a neurologist" "there's no medication besides fludricortisone to help you retain fluid" and "there's nothing we can do."
SO. My question is, does anybody have any idea how/what I can do to get a dad-blamed pacemaker?? My mother's sister had the exact same issue as I have with the same symptoms and same triggers and she got a PM and she hasn't had a single issue since. She was also 40 and a 3 star Army General's wife, so she has major advantage over little ol' 23 year old FED-UP me. I do have an appt with ANOTHER cardiologist in a couple of weeks but I want it to be as productive as possible and didn't know if anyone would have some insight on how I could have this done. I understand the long term affects and I believe for my life the pros outweigh the cons. I'm not sure what any of these doctors are thinking but I'm tired of paying to see specialists that just give me the run around and do absolutely nothing to help me. Any suggestions?? Info/insight?!

10 Comments

vagus nerve?

by techiej - 2016-05-19 03:05:02

A problem with your vagus nerve can also mess with your blood pressure, heart rate, etc. It also interconnects your digestive system.

BTW - the vagus nerve is what can cause you to pass out if you stand too fast, get scared/overexcited or are prone to passing out if you have a BM.

I had to have a PM due to brady following a hiatal hernia repair and now have problems where about once a week will have vision fading, weakness, heavy sweating and if I didn't lay down would probably pass out.

My cardio & EP docs told me I needed a PM but that it probably wouldn't fix the other problem - which it didn't.

Prior to the PM I wore a holter monitor for 48 hrs followed by an event monitor for 3 weeks and had several of my episodes - none of which showed any problems with my heart - no tachy, no arrhythmias.

Tilt Table

by Darse - 2016-05-19 04:05:17

Look up "Tilt Table Test". If you have not had one, this may be an option for getting some answers and solutions.

See a cardiologist who specializes in Heart Rhythms (Electrophysiology). My state lets you query all of the board certified doctors so you can see what additional training they have. Query "Syncope clinic" for your state and see if a facility comes up that specializes in diagnosis fainting (syncope) issues.

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Tilt table

by gp.19 - 2016-05-19 05:05:44

Yes I plan on insisting on a tilt table test when I go next. They originally had scheduled me for one the very first time I went to the dr about this but for some reason I never had it done, and I was 15 so didn't really know any better. The town I live in is pretty podunk but I'm about an hour or so from Atlanta so I can go there if I have to. We have one electrophysiologist in my town and I considered making an appt. Good call on the syncope clinic I'll check into that.

I'll also check out the vagus nerve. They first told me I had "vasovagal syncope" which is why I never get any help because typically there isn't a treatment for that because usually the trigger is seeing blood or something rare. I don't believe that's an accurate diagnosis.

I didn't mention but caffeine exacerbates my symptoms and will make me dizzy and see spots even if I'm sitting. Which is so devastating because I love coffee! 😣 I've considered adrenal issues because of that but the endocrinologist I saw said my symptoms don't point to anything with my endocrine system.

Pacemaker indication

by golden_snitch - 2016-05-19 08:05:05

Hi!

First of all, you need an indication for a pacemaker. With all the tests, especially the ECGs, having come back normal, it will be difficult to convince anyone that a pacemaker is needed. And it really might not do the trick, for instance, if your fainting is blood pressure related. The pacemaker can only treat a heartbeat that's too slow. So, you need some kind of documentation that your heart rate indeed is too slow when you pass out.

I'd suggest that you talk to your cardio about an event recorder, maybe even an implantable one. If you pass out often, you might just need a non-implantable version that you can wear for a week or 30 days or so. It stores your ECG. You can trigger a documentation when you don't feel well and it automatically saves all episodes that are not normal. There are also implantable versions that can save data for months or even years.

So, documentation that your fainting is caused by an issue a pacemaker could treat is needed first. You surely do not want to go a surgery (with all its risks) and have a device implanted that in the end makes no difference at all.

Best wishes!

POTS

by BillH - 2016-05-19 10:05:26

It sounds like you might have POTS. Google it, there are lots of article.

And there is some indication that a specific exercise program can help.

http://www.webmd.com/heart-disease/news/20110620/exercise-may-help-treat-pots-heart-condition

Blood pressure?

by gp.19 - 2016-05-19 11:05:17

I guess I should have clarified. My tests DON'T come back 100% normal. Not the heart tests anyway. But they don't come back "abnormal enough" for anyone to do anything about it. They just brush me off and pass me on to someone else or tell me to come back if I have a problem again. However I will entertain the thought that it could be my blood pressure, but wouldn't that still be caused by my heart? The 2nd cardiologist I went to when I was 17 told me my blood vessels don't constrict all the way. So essentially what I pieced together for myself was, blood pools to my feet when I stand too long and the surface of my skin when I'm hot and can't get back up to my head and so I pass out. I started fainting in the shower and once standing at my aunt's funeral in May in the hot and humid south. I've also passed out standing at my cousin's baseball game in May in the hot and humid south. I've passed out after riding my horse in the heat. I've passed out doing lunges at the gym. They've also done that test taking your blood pressure lying and then sitting and then standing and mine does drop substantially. But what would cause that if not the heart? Standing too quickly and the heat cause the fainting. The heat does something to something in my body and no one with a medical degree cares enough to find out how to fix it. I'm going with PM because it completely cured my aunt (who is still alive-different aunt) but you make a very valid point I may not need one. At this point I'm stabbing in the dark playing doctor on myself because no real doctor will help me.

Do you know anything it could be causing my blood pressure to drop that's not my heart?

Hello!

by Sarbear - 2016-05-20 02:05:21

25 year old female here. I have a similar story to yours. I have been passing out regularly since I was 2 years old and have been through several general doctors, 3 or 4 cardiologists, and more tests than I can count and everyone told me I was normal and I would grow out of it and that it was just vasovegal. They increased in frequency and I was finally sent to an awesome EP who spent a lot of time going over everything and got me a tilt table test where we found out my heart was actually stopping completely when I faint-still related to the vesovegal, but not affecting blood pressure. I got a pacemaker put in 4 months ago and haven't had an episode since. I hope you find answers and a doctor you can trust! Good luck with everything!

NCS

by gp.19 - 2016-05-20 12:05:45

Yes I've researched POTS in the past and I don't think it's quite that but maybe something similar. I had not researched it deep enough to find the exercise program that helps it, I find that very interesting. I currently have a difficult time working out and there are many exercises I cannot do, including box jumps, burpees, even jumping jacks. I have to be very careful and strategic with any kind of lunges, anything with a quick "up and down" motion is out of the question.

What I basically have is Neurocardiogenic Syncope (which is Vasovagal Syncope), and the issue with that is there is little knowledge about it. Everything I have read pretty much said they don't know what causes it or even exactly how to fix it, that there are many things that can work for certain people. Pacemakers are one treatment, but not guaranteed to work on everyone and therefore is controversial and has mixed reviews with doctors. Which makes sense why it would help my Aunt but not necessarily me.

I'm not absolutely hell-bent and determined on a PM, I just really thought it could help me. I truly feel like I miss out on so many things in my life because of this simple yet debilitating issue. I've turned down fantastic jobs because they required being outside in the summer. I have to ride my horse at 6 am and can only compete him late October-April. He and I miss out on training and clinics with Olympic riders because they're in the middle of the day in the summer. I've had the opportunity to intern with phenomenal riders and Olympians that I've had to decline because I physically can't do it and I just think it's so stupid and after this many years with no help I am at the end of my rope. There are so many days I can't go to the gym because I haven't had a gallon and a half of water and 1500mg+ of sodium. I am so deeply frustrated because I've had this issue for so long and have missed so much because of it and I keep being ignored and passed around. I appreciate everyone's input and it has helped me explore other avenues.

Neurocardiogenic syncope

by Gotrhythm - 2016-05-24 06:05:16

In January my friend passed out, hit her head, causing a brain bleed, and breaking her wrist.

Due to the brain bleed, they kept her in the hospital overnight on monitors, they discovered that her heart slowed down occasionally and on one occasion paused for 16 seconds. Interestingly, I was with her at the time, and she said she felt "funny" but she did not lose consciousness.

The first question the cardiologist asked her was did she have a history of passing out. (yes) He diagnosed Neurocardiogenic syncope. She had a pacemaker within 24 hours. The doctor explained that she could still have BP episodes, BUT and it's a big but, her heart wouldn't slow down or stop. Her 6 week checkup showed her pacemaker is kicking in to stop her heart rate from going below 50 bpm about 6% of the time.

What you want to know is what is your heart rate doing when you have an episode. Keep advocating for yourself. And if you haven't already done so, consider going to a major medical center like a university hospital. I'd also consider going to the same doctor my aunt went to.

RE: NCS

by gp.19 - 2016-05-25 12:05:45

What is so completely frustrating for me is that I truly believe if I had ever gotten seriously hurt the times I have passed out, I would have a pacemaker. Nevermind all the times I've ended up sitting underneath a horse, in perfect position for all 4 shod hooves to kick at a fly and kill me, because I was too dizzy to stand. Or the very first time I passed out that I could have landed on a headstone in the cemetery. Or all the showers I've only *just* been able to step out of to pass out on the floor instead of the bottom of the shower to drown.

I have a friend who I've known since I was about 10 or 11 and both of his parents are pain management doctors, and also own a horse farm. I spoke with his mother last week and she confirmed my case of NCS is so severe the only thing that will help me is a PM. She also said the only way I will get one at my age is if I pass out and get hurt all the time, and even then my insurance may not pay for it. My dad, who has been in insurance his whole life, disagrees and said as long as we have tests and records showing I need one they would pay for it. Regardless of the insurance, I would just go to them and have it done but they live halfway across the country from me, either a 12 hour drive or a plane ride that I'm not sure how long after the implantation I would be cleared for.

I would love to go to the same doctor my aunt went to- my Nana told me he was supposed to be one of the best. Unfortunately he's a military doctor on Ft. Lewis and I would not be eligible to see him. However, I do live very close to Emory University Hospital in Atlanta, so if this doctor I see on Thursday won't help me I will go there next.

Thank you so much for your input Gotrhythym, I needed to hear that and know that I should keep fighting for my cause. No one else will fight it for me, and there is a doctor out there that will see what a hindrance this is for my life and want to help me. I just have to find that doctor.

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