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Avatar universal

Syncopes or...?

About me: 30 y/o Female, 5”0 205 pounds (well aware that I am overweight). I have had these symptoms/episodes since I was 14 years old that haven’t gotten progressively worse in my mid-twenties and have yet to find any answers.  The first time I experienced this was when I was in middle school. I was home hanging out with a friend and had to use the rest room. I did my business and as I was leaving the bathroom I had a sudden wave of lightheaded-ness and shortness of breath, so I rushed to lay on my bed. The next thing I remember was waking up with my heart pounding heavily, but slowly in what felt like my throat and feeling disoriented. My legs were like jello! I brushed it off thinking maybe I was dehydrated.  This didn’t happen in a major way again until I was in my early 20’s while out at a party. I was drinking and of course with that comes urination. I felt a bit dizzy and had to use the restroom and when I made it inside, I immediately felt lightheaded and short of breath. The next thing I remember is waking up on the bathroom floor at my friends house covered in urine.   Fast forward another year later and I’m about 24 and getting ready to leave the house one morning. I sat to use the rest room and before I know it I was breathing heavily and felt faint. I came to while slumped over on the toilet, my entire body went lax and my face had hit the bath tub in front of me. Also I had urinated all over my self. Again I had no idea what to think of this. This same year I actually experience a bad fall. I was coming home from celebrating my birthday (I only had 2 beers while I was out and was not intoxicated) As I was climbing up the stairs to go into my room and get undressed, I started to feel it coming on. Lightheadedness, shortness of breath, heart beat racing and thumping in my chest but I could feel it all over, vision started to narrow and BOOM... I fall and hit my face smack on the hard wood and loose consciousness for about a minute. I came too covered in blood from biting down on my lip when I fell. My now husband then boyfriend rushed me to the ER where they presumed I was beaten by him due to my bloody lip, but I lied and said I slipped going up the stairs. Looking back at it I don’t know why I didn’t just tell them the truth, why I really fell and maybe then someone could have ran tests to try and diagnose my issue. I stayed quiet and pretended that nothing was wrong when deep down I felt lost. Why was this happening to me? When would I be able to live a normal life?  I am now 30 years old and my symptoms have progressed to a daily occurrence. Whenever I wake up in the morning or even in the middle of the night and I have to use the rest room (mainly #2) I feel as if I am going to lose consciousness. My breathing becomes heavy, my heart pounds and I do anything to try and hold on. Sometimes I can fight it off, but inevitably it forces itself to happen. Sometimes I can sense it and let my husband know so he can watch out for me. Sometimes it happens and I snap out of it quick feeling better. Sometimes it happens and I feel crippling back pain and have spasms to the point where I can’t move. Sometimes it happens on the toilet and sometimes while I’m just lying in bed. I’ve had multiple ER visits within the past 5 years, hit my head on concrete floors and even have had episodes while driving (twice!). I cannot function normally due to my fear of having an episode. I don’t know whether to call it “fainting” or “passing out” or “syncope” or even “seizure”. My anxiety has worsened over the years out of fear of hurting myself or others if I lose consciousness.  I’ve seen a neurologist and cardiologist. I’ve done tilt table tests, EKG’s, EEG’s, cat scans, an ambulatory EEG where I was monitored for 48 hours, wore a heart monitor for a week, I’ve been told that They are vasovagal syncopes that cannot be treated, I was prescribed anti-seizure medication and other meds that had horrible side effects and still nothing.   Now that I’m 30, married and looking to start a family I fear that I never will be able to. The stress that my body and mind go through on a daily basis is so overwhelming that I fear even if I were to become pregnant I would lose the child during an episode.  I guess the big question is... can ANYONE help me at this point? I feel as if I’ve exhausted my options and don’t know where else to turn.
2 Responses
Avatar universal
The only person I've personally known who had something like this happen was my brother, and he came out of the hospital with a pacemaker.  That clearly isn't going on with you as you've been tested it seems ad nauseum (sorry, unintentional pun).  You've had a diagnosis that says there's nothing you can do about it, but have you gone to see specialists or just the ER?  Have you tried, and can you afford with your insurance, going to places where they are better doctors than what most of us are stuck with, such as Johns Hopkins or the Mayo Clinic?  Have you asked if this can be mitigated or controlled by losing a significant amount of weight?  Some conditions aren't necessarily cured that way but are much less of a problem.  Some examples are Type 2 diabetes, sleep apnea, heart problems, digestive problems, etc.  I have a friend who only has sleep apnea and really bad asthma when he lets himself get too heavy, and it goes away when he loses the extra weight.  I know that's not an easy thing to do, but you've tried everything else.  Peace.
Avatar universal
It does indeed sound like you have vasovagal syncope. One of the most well known 'triggers' of these type of episodes is heavy straining on your body, such as having a difficult bowel movement. What were the results of your tilt table test? I have vasovagal syncope myself, but have different triggers. Mine comes with driving on highways, walking through malls or airports, etc. My provider prescribed Florinef (fludrocortisone). Unfortunately it didn't help me, but typically has good results. You'll want to drink as much water a day as you can to stay hydrated. They also make salt tablets that you can keep on hand and when you feel the symptoms coming on, drink a bottle of water and take a salt tablet. I've been told to carry a bottle of water with me everywhere I go and salt tablets. You can also try compression socks, I have found those do help a little. Unfortunately there is no 'cure.' They say the best treatment is avoidance, but obviously you can't avoid your trigger (bowel movement).  I hope this information helps at least a little!
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