pacemaker for autonomic dysfunction

Hi! I am a 22 year old female diagnosed with “autonomic dysfunction”, for lack of a better term for my symptoms. For years I’ve been lightheaded, bradycardic (normal hr for me is about 35-45), and low BP, as well as the onset of Raynaud’s phenomenon. I’ve been dismissed by about 7 different doctors, and told I was making up the severity my symptoms. I finally got a new cardiologist to do a tilt table, where I went into asystole for 13 seconds- and I was told that the pause would have been longer had I not received atropine and an external pacing pad. I have passed out multiple times in the past (only about once a year), 3 of which I suspect my heart also stopped due to my symptoms after. I recently underwent a second 30-day Holter Monitor which was totally normal.

After my tilt table I started a medication therapy, which caused an allergic reaction, and then I was placed on a steroid to raise my BP. I was on the steroid for 5 months, but it never seemed to positively impact me in any way so I discontinued use. About 2 months ago my doctor decided we should try the POTS exercise therapy program to see if we can retrain my autonomic nervous system. Thus far  i cannot tell much of a difference. 

My last option is to get a pacemaker- however my family and doctor are hesitant since I typically only lose consciousness about once a year, and apprently females can “grow out” of this dysfunction in their 40’s (essentially suggesting that I live with this for the next 20 years). I am ready to get on with my life without the fear of asystole all the time, but also don’t want to undergo the procedure if I don’t absolutely need to. Sorry for such a long post, but has anyone had a similar experience?

2 Comments

age

by Tracey_E - 2018-12-30 21:36:56

It really bothers me when they let age be a reason for making a decision. If we were 60 or 70 with the same symptoms, would it even be a discussion? 13 seconds is a VERY long pause. Passing out can get you seriously hurt. It's great that it's only once a year or so, but it only takes once to wreck a car or fall down the stairs. We've had more than a few members seriously hurt when they passed out, then they ended up with a pacer while recovering from their injuries. 

I'm no expert but I'm pretty sure Raynauds doesn't go away. 

Long term steroids are very hard on the body. 20 years of steriods to me sounds a lot scarier than 20 years of pacing. 20 years of worrying about passing out doesn't sound fun either. 

A normal heart rate is 60. Some people can get away with the 50's but anything under that is doing damage to your body, even if you aren't feeling the symptoms. Organs needs oxygen. 

I have a totally different condition- congenital av block- but I also had a pulse in the 40's and had doctors who didn't want to pace someone young, who thought we should put if off simply because of my age. One day my rate tanked to the low 20's and I ended up in emergency surgery. My guardian angel must have been working overtime because I drove myself to the hospital and arrived safely. When your rate is that low, it's like being drunk. I thought my purple fingernails were funny, it never crossed my mind that my heart could simply stop, that I could pass out. I can tell you that going from the 40's to a normal rate in the 60's was like night and day, my energy skyrocketed. 

Do you absolutely need to do it? No. Would you benefit from it? Probably. I've been paced 24 years now and I feel great. No complications to speak of, it doesn't keep me from doing anything I want to do. For me, it's been nothing but good. If it can fix what's wrong, don't be afraid of it. 

Autonomic problems

by Gemita - 2018-12-31 00:47:39

I am almost three times your age. I have had extensive autonomic testing due vaso vagal syncope.  I also suffer from Raynauds and have always experienced sudden spells of very low heart rates and blood pressure.  Shortly after having autonomic testing  I was diagnosed with several arrhythmias: atrial tachycardia, atrial fibrillation and now atrial flutter, but these were not seen at the time of my testing. I believe my vagus nerve is involved because I also have swallowing and digestion difficulties. I was told at the neurological hospital that “autonomic problems” are very difficult to treat with medication alone and may require a number of different tools to manage it. I now have a pacemaker due syncope from my arrhythmias. It is difficult to know what to advise because of your age, but i would not be against a pacemaker because this would give you peace of mind and protect you from a serious fall in the future.  Any syncopal event, however infrequent, needs to be addressed. I wish you well with whatever decision you make

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