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3 hours ago, Lily said:

There are several different mechanisms that can get you to the same end result (POTS), plus other dysautonomias, so experiences will probably vary.  POTS creeped up on me gradually instead of starting suddenly.  I cannot pick out one day or event when it started.  I will occasionally have an episode like you describe, but most of the time my most disruptive symptoms are constant dragging fatigue and a low level background lightheadedness.  

Thank you! Yes, I know that so many different mechanisms will work together to create the big, somewhat confusing picture of dysautonomias, and that so many's experiences will vary... but it's still very helpful to hear how others came about their diagnosis & such. Thank you for sharing  

15 hours ago, StayAtHomeMom said:

Mine began out of the blue. I went for a short run (really not in shape) and could never get a deep breath after that. That was 3 years ago. Since then I have had weird symptoms kind of cycle. 

In the beginning I had tingling nose and fingers that would only get better after a cigarette. Stomach issues. Heartburn (no history unless I was pregnant). Dizziness and lightheadedness. Definitely felt worse after eating bread heavy foods. Had anxiety issues as well ( I have a history but this was different). 

Eventually these subsided or eased and then I would get new symptoms. Everytime I would stand up I would have to pee. I have a strong bladder and used to make fun of my mom for crossing her legs when she sneezed but I spent about six months not thinking it was funny anymore. 

About a year and a half into not breathing right I came across POTS and how not everyone fainted. I dismissed it in my initial research because I didn't faint. I did a poor man's tilt table and was shocked. Thought maybe something was wrong with my blood pressure machine. So I tried it on my 13 year old son who was about my size and his did the same. So I tried it on my hubby. His was normal response. 

So then I began finding a doctor that would take me serious and put me on a tilt table. I was diagnosed January 2017 with POTS. In September 2017 I was rediagnosised with POTS and he added autonomic dysfunction. I currently take midodrine and metoperlol ( sorry med spelling sucks). 

I suspect my oldest son has it who is now 15 but haven't pushed the diagnosis because he functions without meds but I suspect soon I will have to confirm it. No underlying yet. I am currently taking a break from doctors. I am tired of tests coming up normal. I suspect autoimmune because it runs heavy on one side of my family but ANA keeps coming back negative. 

Some people are OK without knowing underlying but I am not. I need to know for peace of mind and the hope that if I fix the underlying problem my POTS will go away. I suspect I have had it since I was a teenager but I have no proof. Some symptoms I dismissed as just my weird body but after my diagnosis I have wondered. 

I nowadays I do OK with my medicine as long as I avoid major triggers. Oh and salt and electrolytes help too.

Sorry my post is so long. 

13

Thank you for sharing!! No apologies for the long post, I really am finding it helpful to hear others' experiences!

Hello, all. I am still on the journey of having everything ruled out and diagnosed, but as of where we stand now it certainly looks like dysautonomia and either POTs and/or a MVP. Just curious to see how everyone else's "episodes" started out? I'm still trying to understand all of this and wrap my mind around it

The first "incident" occurred while eating dinner with friends. Everything seemed/felt normal. No stress or anything. Suddenly, out of nowhere, I felt like my blood pressure dropped out of nowhere and I felt like I was going to pass out. I stayed quiet for a moment but when I seemed to become even more dizzy and "out of it", I finally said "I feel weird..." A friend's spouse who is a military doctor told me to drink some water and I was able to do that, felt my heart rate decrease and eventually went back to normal. Other than feeling tired after I wrote it off as strange and didn't really think about it again. 

I had another very brief episode happen again about a month later while out to lunch. Again, it happened quickly but I can only explain it as a sudden dizzy/strange feeling & a spike in my heart rate. I kind of zoned out for a minute & tried to drink water and eventually, I felt better.  Again, a little tired after but nothing insane. 

Then, about a month later it happened again. This time I was at lunch with my mom and sister. Again, completely low key environment and nothing stressful/out of the ordinary. I started feeling "weird" (dizzy, kind of out of it) halfway through the meal, but again, didn't say anything. We left the restaurant and as we were leaving I said "I feel really strange..."  Suddenly, my heart rate spiked, I started sweating like crazy & shaking (legs and arms - fight our flight type of shaking), felt nauseous, couldn't breathe. This one was the worst so far - I had never had it escalate beyond a few minutes here or there. After about 8-10 minutes I was able to calm down and when we pulled up to an ER decided not to go because it was Saturday and my mom is in the medical field and knew it would most likely end up being a long day of no answers...

Anyway, these episodes have continued to become more frequent and consistent... while the first handful seemed centered around meals, that is not the case anymore. I've been woken up in the middle of the night with heart rate at 165 (per Apple Watch) and had the sweating/shaking/dizziness/etc + have just suddenly been "hit" with higher heart rates and/or dizziness and lightheadedness out of nowhere.  I started to think "Okay, maybe I randomly have developed panic attacks for no reason whatsoever and no stress"... but after three months of being dizzy almost every day, constantly exhausted, spikes in heart rate randomly, etc., we are definitely thinking it's something else (and I'm glad the doctors are hearing!).

Luckily, I have a great GP and cardiologist who are actually listening. The first two I went to wrote it off as anxiety ... which I was willing to accept - even though it made zero sense, but as we all know: we know our bodies better than anyone. I couldn't figure out how anxiety of this severity could just come out of the blue when I was highly active, very content with life, actively participating in hot yoga,  and just generally in a great place. It just did not seem to match up. They're already very certain I have some sort of MVP that could be triggering all, but this week will be the echo/stress test for that... then tilt table the following week.

The thing that I'm most confused about with all of this, is that for a handful of days I can feel almost normal! No dizziness really, higher energy levels, regular heartrates, etc. Then BOOM completely out of nowhere, a wave of dizziness will hit and that + lightheadendess will then last for days on end with no rhyme or reason and during that time I am just BEYOND exhausted. My brain just feels asleep. I already ate a fairly clean diet (very low processed carbs), but eliminated gluten/dairy/all inflammatory foods + caffeine and alcohol (why must this make us get rid of some of life's yummiest things?!)

 I would love to hear from others: did your "episodes" (I don't know what to call them) begin slowly and out of the blue? Do your symptoms sometimes come out of nowhere - specifically the diziness & lightheadness? Like I said, I'm just having trouble understanding all of this & would love to hear others' stories as I continue to delve in and understand.