WildMtnHoney

Ohhhh, wait!! I think my husband must just buy the LOW sodium kind! I just now looked on their website, and the "regular" Pacific has 2280mg per box. Much better. I would still have to drink two boxes of broth per day. Not sure I could do that in the summer, but in the winter it may be doable!

Another one here on Florinef and trying to get enough salt in each day! Yogini, out of curiosity, which organic broth is that? The only commercial one I have found is Pacific brand, and it only has 280mg sodium in the entire BOX of broth I have been measuring teaspoons of salt because the sodium content in salt is fairly consistent (similar to how it is fairly consistent in broth). My Dr wants me to get around 5g per day, and there are roughly 2400mg sodium per teaspoon, so I measure 2 slightly heaping teaspoons each day and use them salt my drinks and food throughout the day. I find I am not using it all each day yet, though, so I just ordered some empty gelatine capsules and plan to use them to make it easier. I will still salt my food and drinks, I just plan to also take cap full of salt at each meal, to see if that helps.

Losing volume with the diarrhea makes total sense, but I hadn't really thought about it. I'll have to really watch my salt/fluid intake today and see if that can help. Do you make your own salt capsules? I am trying to just add salt to my water and food right now, by measuring out two teaspoons per day and trying to use it all up by the end of the day (per Dr's recommendation) and that is HARD. Can you tell me more, or point me to a thread about the caps? As for the Adderall, I wanted to go slow and see how it would affect me, so personally I started with just a half of a 10mg pill the first day, which was WAY too little. I was a faint-y mess. So the next day I took 5mg in the morning, and 2.5 (so a quarter of a pill) at noon, because I wasn't sure how it would affect sleep. Still too little, but I slept fine -- even fell asleep at 3pm, just sitting and reading (oops). Then Monday was 7.5 and 2.5. Nearly there, but still lightheaded/off, not quite right. My Rx says 10 and 10, btw, and Dr S has instructions that I can even go up from there, as needed, so I was going SUPER slowly. Tuesday I had to be functional. Took 10mg and 5mg. I was able to walk around the house, finally! I still slept FINE! Took the same dose Wednesday and was able to get out of the house for 3 hours (just to sit at a park, but still!). I am not quite sure this is my "final" dose, though. I am still feeling "off" if you know what I mean. I am not sure if it is the narrow pulse pressures, or what. I haven't fainted since Tuesday, though! And, I feel less "foggy" - not completely better, but I can certainly see some improvements. Like, I had a simple phone call that I needed to make this week, and I had it on a note but I kept forgetting to put it in my to-do app, so it didn't get done...until yesterday. I saw it, got busy with my day, then saw my phone, and REMEMBERED the phone call, and made it. Seems simple to some people maybe, but for me, that is a big deal. Without alarms, and apps, etc, I would forget so much in a day/week. So, after not quite a full week of Adderall, I think it's working out.

Hi Kaitlyn, thanks for checking in!! Dr S decided to switch some things up. I am now on Adderall instead of Midodrine (since last Saturday, so still very recently) but that change seems to have been a good one, I *think* so far. I am still working out what the "right" dose for me should be. No scary drops in HR, for sure. But my pulse pressure has been narrow, now. I used to have BP in the range of 90/60 when I was feeling "ok", with it going lower at times, but the difference between the two always being around 30ish. Now, however, I'm seeing BP's that are, like, 88/73 (today's latest reading, an hour after lunch, just sitting, not feeling particularly "well" but also not too lightheaded, either?). I'm wondering why they are so close? I have also been diagnosed with Sjogren's. I am going to start Plaquenil soon (maybe Friday, or Saturday, already have it, just want dh to be home to take care of the kids if it upsets my tummy too much). On top of all THAT, I have the same tummy issues (IBS, maybe? chronic pain, chronic diarrhea) and am trying psyllium (Metamucil capsules) instead of benefiber, and Align instead of the probiotic I was using...but I'm still having diarrhea and pain I have also lost a bit of weight, but I don't know if that's due to the diarrhea or Adderall, or what.

Ok, so I'm replying to my own post, but something strange *just* happened, that has happened before, and I wanted to get opinions about it while I'm thinking of it!! I woke up at my usual time (5ish am) this morning, but around 7am I just could not keep my eyes open, and my head kept hitting my chest falling over in sleep! So, thankfully it's summer, the kids are all sleeping in anyway, and I went back to bed. Now, I just happen to have a finger-tip pulse ox because I've got sleep apnea, and I've had a DVT (which makes me paranoid of pulmonary embolism). Amazingly I had the thought to slip it on as I drifted off to sleep, and I already had my cell phone nearby. It first read 87 for O2, then went up to 89, with a HR of 70. Now I'm awake 2 hours later with a foggy head, weird headache (probably because I failed to put my CPAP on, I literally just fell asleep after taking the pic). But my O2 is back up in the low 90s. Has this happened to anyone else? "Normally" I can see my O2 in the 90s (yes, I check periodically through a week!) so this was super strange. I've also had the weird, "falling asleep RIGHT NOW" times before, just never checked my O2 at those times.

Hi there! Newbie here, though realizing that I'm not at all new to dysautonomia, just haven't had a name for it for years. I had a previous Cardio who put me on just Florinef and increased salt (but I didn't understand to *decrease* or at least not increase water, so I was drinking way too much water, and not getting enough salt). She referred me to a Cardio EP/Internist who now has me still on the Florinef, but also started midodrine and propranolol (I have IST primarily, but also syncope, mostly on exertion). I am doing better! Not great Still have my moments. EP has written that I am to increase the midodrine (only started with 2.5mg 3xday) if I was still having issues, but for some reason I'm hesitant to do so. Can someone tell me that there is no reason to be afraid to do that (or even that my worries are valid) so I can work through that? I am trying to start the Levine protocol, too, per EP. However, I also have GI issues, and it's proving more difficult than I'd like it to be. So far, I've made it through half of a week, then got interrupted, and now I'll have to start over. I didn't feel "worse" immediately after, so that was impressive. I realize that this isn't something that I'll "get over" but I'm hopeful now that I can find some methods to "get through" my days.