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Janesays

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  1. I just found this thread from a couple years back in my search. Wondering how you all are now. I was Dxed in 2018 with POTS (likely Post-viral, elevated Epstein Barr) but suspected EDS as soon as I started reading about it. That was confirmed by PT and it was explained to me that people with underlying joint hypermobility were more vulnerable to post viral POTS for whatever reason. Since about September or October last year, I have been very gradually improving from what felt like death back up to neutral. By February I was having some great days each month. Most of my symptoms have concentrated around the 3 weeks of the month that I'm involved with my period. Before, during, after. I think I am experiencing the regression of summertime. Yesterday I had a sensory storm, and I was so frightened. I have not experienced one like that in several months. I had a very busy morning, with a lot of driving, and being in the heat. I just got a wild idea that it would be fine for me to go out garage saling on a summertime Saturday. I waited way too long to have lunch and then overate, too. I know not to do that, but I just didn't plan ahead for once. I usually have my arsenal if helping supplies, ice and water and so on. I began having tachycardia and congestion in my chest on my drive back to the house long after having eaten. I knew it was building up and it did crescendo. Racing thoughts, irritability somewhat, but more weakness and confusion, and a mild headache. Blood pressure was very low. My episodes are a little bit like a seizure. I've had some mild reforms through these past months managing but this was kind of bad one. I had much more deep and horrible extremes of this in 2018, when I was first getting diagnosed (12 ER trips in 2018), but I am not totally textbook. I have a pre-syncopies and syncopes rather than true fainting. But I'm at a point where that mostly just comes up in luteal phase and throughout my period. And it starts with a tachycardia that goes up... Then comes down and goes up a little higher and then comes down and goes up a little higher even still until it sort of crescendos and then gradually resolves in an hour or two but I feel wrecked and exhausted afterwards, rapid thoughts and so on. The highlight here is that I begin with agitation and overstimulation, overheating or stress (arguing kids, loud noise, TV)....But again 80% of the time I'm really well managed. I have built up some resilience it seems. But if several negatives happen at the same time.... This episode seems to have a starting stop so I did wonder if it was something allergic. I wondered that way back when as well. When any of you have episodes Are they somewhat explainable or entirely random? What happened yesterday just seems to be the way my body defaults. Another words the forest of my body has been well plowed and tachycardia storms, but maybe it's something else?? It's been a loooong time since I had a total storm like that. But it was really scary. My husband and kids went to an event that I had planned to attend, and I went ahead and had one of my neighbors come over and sit with me who is one who took me to one of my many ER trips so she knows my story. We had a good visit and I had several tachy waves coupled with hot flashes while she was here and it was coming down. I just quietly kept on a conversation and rested and we wrote it down. I see my specialist on Tuesday. I haven't been on here in a long time, but I did this search for tachy storms and I knew it would make me feel better by possibly connecting me with people who may relate. Anyway, I stumbled across this and just totally wanted you all to know even after all this time that you are not alone either. I'm so happy that I'm doing better overall. And I'm here to encourage anyone who is sure that these symptoms will never go away, that's for sure. But sometimes I get so exhausted. POTS management and self treatment is a bit like trying to live life while simultaneously holding a huge beach ball under water. I'm seeking some ideas on how to make that beach ball... Maybe let a little air out of it somehow! ☺️ It's like the very work of managing my illness makes me sick at times! Can anyone relate to this?
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