New Poster - 3 Diagnoses And Testing For 4Th - Bp Low And Hr High?

[VetteSage]

I just joined the forum although I've read numerous posts for a little while. I am a 24 year old male and have been diagnosed with Ehlers-Danlos Type III, POTS, and "severe" gastroparesis. We are currently testing, but initial tests show that I have the Hyperadrenergic form of POTS. We are also testing because I have symptoms of Mast Cell Activation Syndrome. I thought I would take a moment to say hello.

My attacks, I believe, are similar to what many here experience, but there are a couple that are fairly extreme (from my perspective) and I was wondering if anyone else has experienced the same. My attacks are normally either high heart rate causing chest pain and dizziness or the usual symptoms that many of us with dysautonomia experience.

There are times when I have what I call a "crisis" though, since I'm not sure what else to call it. I start out with an extreme feeling of heat. Then I get a feeling of nausea, but it runs throughout the body. Following that, my hands and feet begin to go numb. Then, the brain fog sets in and it feels like I'm going to fall through the floor and it's very hard to think of anything and my family has stated that I occasionally ramble about incomprehensible things if I'm talking at all. Then my senses start to go, with my hearing muffling first, then feeling like I've been punched in the nose, then an extremely bitter taste of nothing in my mouth, then my body goes entirely numb, and then my sight tunnels until it's nothing but darkness.

The worst that I have had resulted in my being "non-responsive" (based on what my family told me, what the doctor told them, and what's in my medical records) for almost an hour. Numerous times during this hour I had apparently stopped breathing, with one incident having my blood pressure down to 60/30 (that was measure, but apparently dropped a few more points at its lowest) ... but my heart rate was 187. My heart rate is normally 60-62 when resting and between 90-100 simply from standing (going higher with doing much of anything). My blood pressure is normally 110-120/70-80 on average when resting.

I have no memory from that day, but I recall an experience that I won't get into because it's difficult to describe. Research online suggests it was a "near death" experience. Light, but not blinding, seeing everything, but nothing being a solid object, color and sound were the same thing, extreme peace, but not like happiness or sadness as much as just calm and nothing.

Anyways, this is my experience with POTS and the others. It happens usually once or twice every year with ~4-6 months between each incident. Medicine has been ineffective, but we're not entirely sure if it's because it's ineffective or whether it's simply not being absorbed. My gastroparesis is "severe". It was noted that when I'm given hydromorphone in the hospital for pain, by IV it works normally, but when I take a pill at home ... it does not work at all or at least not in a manner that I can feel at all.

Has anyone else had a similar experience like these "crises"? I assume plenty have since POTS makes our heart rate skyrocket, but can also yield very low BP. Still, they are frightening to say the least.

[Katybug]

Hello and welcome! I have episodes like what you describe in the first crisis description and I have passed out but never for an hour. Have you had an EEG to rule out any sort of seizure activity?

[VetteSage]

I've had a number of EEGs both during health, immediately after one of these, and also a couple that managed to be during. They were determined not to be seizures or strokes. I've also not had a heart attack.

[corina]

Hi VetteSage! I don't have simular experiences but wanted to welcome you here!