potsiebarbie

So I was at the ER (again!). I got a diagnosis of gitelman last week from nephrologist. I have my doubts, but I'm known for soaking in denial. Anyway, the ECG monitor I was hooked up to kept going off and I'd look at it and these are what I would see... Cannot read ECG Pacer nt pacing Pause Pair pvcs Vtach ...During some I had noticeable symptoms- some not so much. The nurse and doc kept telling me it's no biggie, but I'm not convinced. Thoughts? Reassurance? Anything?

I've had a head ct, a sinus CT, two chest CTs, two abdominal/pelvic CTs, and a soft tissue neck CT. All in the past year! I keep thinking if there wasn't something wrong with me before- there sure is now! (With all the radiation exposion) lol Not really lol but I'm trying to make myself feel better. Haha

I'm kinda concerned about the number of CTs I have had in the past year. Thoughts?

Thank you! What kind of diet do you follow? And what exercise? I'm nosey. Lol

If you don't mind me asking, was that your starting dose?

Lexapro is the one I was on last. If you don't mind me asking, did you have to up the starting does?

Hi. Thanks for responding! To answer your questions.... 1. Yes. Benzos seem to be relatively helpful. However, I would need them multiple times a day and I build tolerance rather quickly. So it's hard to rely on it all the time. I usually try to save it for when I really really really need it. I guess. IDK. Lol 2. I'm still working on finding a diet and exercise regimen that suits me. I'm one of those people who needs it all on paper laid out in front of me so I could follow it. So if someone was like do this exercise everyday, and here, follow this meal plan- I'd be golden. 3. Usually, yes. I don't seem to have that exercise intolerance (knock on wood) that others have. However, I've been having issues with my leg going numb (from foot up to low back/abdomen) when walking for a bit. That has kind of put a damper on things. I've also got some nerve and muscle (I think) pain going on that's pretty debilitating. On the bright side I start physical therapy tomorrow so this is basically my last hope since my doc doesn't want to do any further testing. 4. My support system is nil. Nobody in my family takes the whole pots thing seriously. I'm just a lazy hypochondriac. 5. I don't work. I take care of three tiny humans full time (two of which have special needs). I am thinking of going back to college (taking a few classes at the local community college). 6. Yes! I'm consumed with them! I also feel like I'm just gonna drop dead and my kids will be the only ones home. I have awful thoughts like that. Not wanting to plan much into the future cuz I feel like whatever is wrong with me is gonna take me sooner rather than later. Horrible, I know. I just wish I had a kick-*** team of docs who actually give a d***.

Okay so... POTS:1 Carissa:0 I'm thinking with the way things are going I could use an antidepressant. Now I've trialed many. Ssris and snris, (all the benzos mankind has to offer) but now that I've been off for a while I'm looking for some ideas on what's working for others. I know everybody is different, but talking it over and hearing others' experiences might help. Basically I'm constantly feeling worse. Not just pots but I'm assuming whatever is causing it too. It's really wreaking havoc on my body and spirit. I'm depressed from my limitations amongst other things, and honestly extremely anxious. I always think worst case scenario. Every ache and pain must be a blood clot or aneurysm. I just can't shut that part of my brain up. And my doctors (or lack thereof) are no help. Any experiences with depression, anxiety, and/or meds for that would be greatly appreciated.

Tubthumping by Chumbawamba "I get knocked down, but I get up again. You're never gonna keep me down".

I actually may try that. Who knows? Maybe we'll get some use out of that dishwasher.

Good question! I'm in that area too so I'd like to know as well.

I generally just do a little milk or half n half in mine. Sometimes I need a change, but eventually just back to a splash of milk. Lol

Eight o'clock is my go to too! My mother in law introduced me to it.

Oh my goodness! I'm having coffee at your house. Lol That sounds amazing!

I think this would be a cool feature.

Not really. It comes and goes. Fun fact though: same spot on my back (right side under shoulder blade) had pain for months and now it's numb. IDK. Maybe connected somehow.

I saw my new cardiologist since losing my private health insurance. I waited over an hour past my appointment time for not even two minutes (no joke) of his time. He basically said I could live to 120 with pots, but it wreaks havoc on your life. And that he wouldn't prescribe a beta blocker because BP is already low and that treatments make pots patients worse so we just like to leave them alone since nothing can be done. Needless to say I cried the whole way home. I just feel really hopeless. I have three kids under five (two special needs) and I feel like I let them down. I'm not the mom I used to be since pots. And I feel like the doctors are missing something and I'm scared of dropping dead and my kids finding me. Sorry, I know it's morbid, but I feel pretty down and scared. I'm feeling really emotional and needed to vent so thank you. Lol

I was convinced my RUQ pain was gallbladder, but I had a million ultrasounds, some cts, and a hida scan say otherwise.

Yes. Unfortunately not as helpful as I was hoping.

If you have abdominal pain please describe it. Also do you have a hitial hernia? I've had a gastro work up, and fifty shades of abdominal pain that I don't know what it is or what causes it. I've trialed all kinds of meds. Just trying to get some insight. Also I do have a hitial hernia.

Me! And I'm tachy even after bags of iv fluid and hours of laying in the ER. Constant palpitations and horrific sensation of abnormal breathing (can't even describe it). I always feel like doctors are missing something and I'm gonna die. It's scares me to death (no pun intended) especially because I have three small kids. So you are not alone in feeling the way you do. I see a new cardiologist tomorrow so I am hoping for some help.

I for sure will. I definitely think it helps with at least some of my issues and that's better than nada!

In breaking news! ... The ER called me and said that they were having some lab errors on the machine that ran my Magnesium. So it might not be low after all. I'm honestly really bummed cuz I was hoping this was a big ah ha moment and so many of my symptoms seemed to fit. I just had blood drawn to re-check at my PCP but the results may not be in for a couple days. I'm feeling pretty hopeless.

.8 Tons of symptoms (hence the three ER visits), but idk which ones are directly related. Persistent tachycardia (even after iv fluids and hours of laying down) Chest pain (way worse than usual) S.O.B. (although this has been my most persistent and bothersome problem since pots) Back pain Muscle twitches ( including a wiggling right below the sternum in the stomach that I find extremely disturbing, but doctors seem all too unamused with it) Palpitations (of course) Nerve pain (at least I think it is nerve) And for the grand finale (newest symptom and incredibly disabling and unsettling) every time I'm walking my entire leg goes numb (starting from foot and working it's way up leg to lower back and abdomen)

You called it with the Magnesium! I'm in the ER and my Magnesium is severely low. About to receive some via iv. 👍