Newbie here - seeing some improvement after Dx, finally

[WildMtnHoney]

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.  

[WildMtnHoney]

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.

[MomtoGiuliana]

Welcome to the forum!

Good to have this data to ask your doctor about.  I believe it is normal for oxygen sat to drop with sleep but it would be best to talk to your doctor about your situation.

As far as midodrine, many patients on the forum use or used that med and hopefully can describe their experiences with increasing dosage to address symptoms.

It can take some time to find the treatments (medication, exercise, etc.) that work best.

[Kaitlyn]

Hi Wildmtnhoney - how are you doing now?

I was on Midodrine but as low as my BP usually runs 86/56 at the dr today for example - Midodrine wasn't really that effective. It gave me a small bump but my new EP/Cardio doesn't like the drug and preferred I didn't take it since it wasn't helping all that much. It didn't hurt me either and seemed to leave my system quickly. At one point when I had a cold and my BP was super tanked (danger zone) they had me taking 30 mg a day. This is definitely something to discuss further with with your cardiologist if you have concerns.

I tried Florinef and had an allergic reaction to it. Seems so many of us with Dysautonomia are sensitive to meds. So that was out and I can't really speak about it. Oh and I have IST also and take Nadolol for that and POTS. Still have the symptoms but HR is much better controlled.

what I am doing now for BP is homemade salt capsules, some compression, electrolyte drinks and trying to avoid triggers. It isn't perfect but my BP is pretty resistant to everything they have tried anyway.

Hope things are going well with you!

Kaitlyn

[WildMtnHoney]

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.

[Kaitlyn]

WMH-

with the diarrhea you can lose volume quickly leading to lower BP and lightheadedness, presyncope and syncope. When my gut really acts up my neuro gives me a script for VSL probiotics. It seems to help with the diarrhea and pain from IBS. MOST OF THE TIME oops - I tend toward constipation but you know how it is with Dysautonomia. If the symptoms aren't changing something is wrong lol

thats interesting - my neuro wants to try me on a stimulant next for cognitive impairment, fatigue and brain fog. Adderal was one she mentioned. I hope that works well for you! I have had some very narrow readings also. Not consistently though. If they stayed there consistently I would call my cardio and let them know.

my BP always drops after eating. Postprandial hypotension - the blood goes to the gut to work on digestion.

sounds like we have a lot of overlap. Minus the Sjogrens - sorry to hear you've had that added as well. 

Let me know how things turn out with the adderal. Is it making you jittery at all? What was your starting dose?

kaitlyn

[WildMtnHoney]

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.  

 

[Kaitlyn]

That's great about the Adderall - so happy it's helping you ?

I totally understand what your saying about the foggy and forgetting things. With your description of the Adderall I am feeling a bit more open to it. I tend to be so anti- med but that's a tough place to be when you need them.

Salt capsules: I but empty capsules size 1 by herb affair on Amazon. $17 for 1000. Then fill them with salt (my cardio has me alternate between sea salt and iodized so I don't overload on potassium). The capsules just snap into place after you fill them. The size holds a little more than a gram. It has been working great for me. I take anywhere from 1-3 depending on how I'm feeling and still salt liberally with food. I love salt so that's ok with me. My neuro recommended 6-8 grams per day. I am sure it's different for everyone.

I also found another product on Amazon called Mestrength. $17 for ten pouches of powder you add to a bottle of water for rehydration. Has electrolytes, potassium, sodium etc but no sugar. Comes in different flavors and is pretty good.

Yes with already low BP if you have diarrhea for even 24 hrs it can have a pretty big impact - again what my neuro said. She told me to go in for IV fluids if this happens to me. I know it can be hard to get enough salt and fluids. Maybe the capsules would help you? ?