Just Need To Vent (Tachy Issues, Breathing Issues, Etc.)

[Becia]

I always call the few days after a major holiday that requires me to be out and about and to fight syncope more than normal, the "crash days." Literally, those are the days I crash, I cannot get out of bed, I cannot get up to do much of anything around the house, other than go to another place in the house and lay down because I'm so symptomatic.

Thanksgiving was rough, mainly because my birthday was the next day, and my friends had planned on taking me to the arbortorium in Columbus (which was fantastic for a potsy, because it was so pretty and calming), and then we had church that weekend, etc. I crashed about two days afterwards, had lots of seizures because my body just basically decided to freak out, and coming back from all of that wasn't easy.

Well, Christmas, I knew what to expect more, so I did my best to pace myself. Of course, I just finished a 2 day EEG test for my neuro guy to track my seizures and such, to see if there's a way to treat them, I was very symptomatic going into the holiday, but I still had the mindset of "I have to do this, I cannot pass out in front of family, please don't have a seizure, oh god, please don't let them worry about me." That didn't help..but I got through the day. By 3pm, everyone was filing out of the house, the dishes were running in the washer, and I was heading for my PJs to kick my feet up and do nothing. Pretty much did nothing yesterday, and same today.

But I noticed when I tried to lay on my bed, my chest is sore from trying to catch my breath. I'm short of breath often, but normally when I'm sitting up doing something in my chair is it worse. I physically hurt from trying to take a deep breath. On top of that, my tachycardia isn't getting better today when I lay down. Even when propped up just a bit so I'm not all the way down (Midodrine is in my system, laying down is a no no), it feels like I should be running a marathon as fast as it's beating. I've tried yoga breathing, stretching (thought maybe my chest hurt from sleeping crooked last night), sitting up for a bit more... I cannot get it to slow down.

Is there anything ya'll do to try and manage these symptoms better? I'm on all this crazy medication, can't really tell if it's working or just detrimental (I'm on four meds for my pots that have a side effect of seizures, which makes the past couple months really fun), but just today, I am so worn out, and the longer my body feels like it's running a marathon, the more exhausted I get, and then I keep thinking "I have to do ____" (blank can be shower, get up and eat something, use the bathroom, anything).

Any suggestions?

[BeforeTheMorning]

Hi Becia,

I don't really have any suggestions other than waiting it out with rest and fluids. ( And yeah I know that's probably not very helpful, sorry. )

I just wanted to say I'm so sorry you're feeling really bad and I hope you get through this rough patch quickly.

Best Wishes,

Lyla

[Becia]

Thanks Lyla, I do appreciate the thoughts.

[Freaked]

I've suffered from the stubbotn tachycardia problem a few times. For me, it seems to be an indication that I have a temperature (one of my symptoms) or it's a reaction to something that's increasing my adrenaline, like benzo withdrawal. Are you on florinef? That gave me incredibly stubborn tachycardia. A benzo or passionflower to stimulate the parasympathetic system are the only things I can think of that might help if you can't risk stopping any meds to see if one of them is causing it.

[Becia]

Yep, been on florinef for about three or four months now. I'm hoping that maybe all of the issues here were kinda like a precursor to this cold/flu thing I have now. Still very symptomatic.

[looneymom]

Hi Becia,

Lay around and take it easy. If you are dealing with a cold or virus, it will make your symptoms worse. When Tyler has these symptoms, all he wants is chicken broth, hot apple cider and gatoraide snowcones.

Rachel

[Becia]

Oo, a Gatorade snowcone! I should totally do this now, lol.

[Hope]

Becia, I'm echoing the rest. It's crucial for me when my symptoms are escalating. We have a snowcone maker! I've never thought about a Gatorade snowcone, what a great idea =) Hope you get some relief soon!

[Becia]

I'm making a gatorade slushy now... I woke up this morning and can't breathe, wheezing pretty good and coughing a TON, although not coughing anything up. Yet, I'm coughing, so I'm passing out a lot too. Looks like a trip to urgent care may be in my future, because I can't really tolerate this much more. Can't recover from one thing while fighting anything else sometimes.

I believe potato soup is on the board for today... throw it all in a crock pot and let it go, lol.

[Freaked]

Hope you're feeling better. The flu probably was the culprit. Don't hesitate to go in somewhere if your symptoms get too severe to handle.

[Becia]

I hesitate because I normally don't have a ride,and I'm not allowed to drive at the moment, and no one around here understands POTS, so they don't want to treat me. I'm hoping to go to the urgent care up the road tomorrow if I am ant get in with my normal gp who will trreat me.

My hr has skyrocketed the last few hours, and I've really struggled to breathe, so yeah, I can't fight this without some antibiotics or something, whatever this is. Honestly does feel like a flu, I hurt like crazy, been having fevers and chills, and I've had several seizures today, no doubt from my body just going insane and not handling anything right.