RecipeForDisaster

I have decent results from licorice, too. It’s almost as helpful as florinef was, but without the edema and migraines I got with florinef.

I should add that I take in 15gm salt daily. I want to eat it plain! I am trying to avoid taking DDAVP every day - I just use it when I’m in really bad shape or I need to have a decent day.

I use taurine, and I find it helpful although I haven’t pushed the dose yet. It sure hasn’t lowered BP for me - that would be bad.

My mom found it a life changer!! She was going crazy from high HR and palpitations, PVCs, etc. and couldn’t tolerate a beta blocker or calcium channel blocker. She is thrilled with this stuff.

I had a very hard time getting desmopressin - but it makes a much bigger difference for me than fludrocortisone did, and the best part is, I can take it as needed instead of having it built up in my system. The side effects are less with desmopressin, too. If I take too much (I have a script for 0.2mg twice a day, which I’ve never gotten up to) I get headaches and weird feelings, but it helps my BP and gives a nice boost. I wouldn’t call it a life changer, but it’s about 1/3 as effective as a liter of IV fluids. It’s great to have in a pinch.

I didn’t have great benefits from fludrocortisone, mostly lots of edema and migraines, but most others seem to do well on it. I do take licorice root in its place, which helps without side effects.

Maybe you could start licorice as you reduce florinef? That’s how I did it. With MD approval, of course.

I had a similar experience with florinef and switched over to licorice root. It doesn’t help quite as much, but I don’t have the edema or frequent migraines, either. My doctors all endorse it for me, surprisingly. See what yours say?

They are not similar types of medications. The first is heart related, the others are two difference kinds of asthma medications.

I just got lab orders to measure ACE, along with a ton of other stuff, from a new doctor. Interesting!

I have very bad asthma and do fine with metoprolol... your mileage may vary, but it helps me quite a bit.

I use tiny doses often to try and keep my BP up. I don’t take it before bed... if I was doing okay, I wouldn’t take it. For me, 5mg or more comes with a lot more side effects, so I take 2.5mg every couple of hours. I’m prescribed 60mg daily.

I wish I had some magic words for you, but I have this situation with many of my highly respected physicians. I had an appt last week where I was told the doctor "can’t prescribe my DDAVP or fluids because there isn’t enough data and besides drinking fluids is exactly the same". I tried to reason with him, showing my records of awful BPs and how the fluids fix everything and nothing else does... it’s a huge bummer. The kind doctor who prescribed these things for me is no longer seeing patients, so I’m in trouble, not being able to find anyone to take them over so far.

My theory is that they get defensive when they can’t help and they kind of shut down. It frustrates them when they don’t have answers for us, and makes them less interested in thinking creatively. I usually dread these visits. I’m often told "you need to get used to not having a diagnosis/answers, this is your new normal" and when I say I need treatment they say they can’t because I don’t have a diagnosis. Really??

Good luck!

I take 60mg 3 times daily and it does help, just not dramatically. I am considering trying higher doses, with a doctors' permission, because I haven’t had side effects. 

I take adderall for my Dysautonomia and super fatigue (lack of sleep, due to illness and sleep apnea, too), and it helps me to feel more alive and awake, with a slightly better BP. I have no issues from taking it, and I even skip a day every week to be sure I can function without it. I only take 2.5mg most days which is ridiculously tiny. If I don’t sleep at all, I take 5mg which is what was prescribed. It’s more to help me perfuse than anything.
 

I don’t have ADD/ADHD. I do have trouble thinking the more sick I am, but I think that’s purely perfusion related and distraction from feeling so lousy. When I’m trying not to pass out, that fully occupies my mind.

For me, even room temp is far too cold. It’s still about 30+ degrees colder than body temp... I find it makes me freezing, even though I I run my fluids slowly. Most people don’t realize that and figure as long as it isn’t "cold" (stored in the car in the winter!) it’s fine. I try to leave my fluids near my pellet stove for a while before I use them, but half the time it’s a surprise. In that case, I put a portable heating pad against the bag in an insulated pouch I made from a silver bubble wrap envelope. It helps a little.

Cold fluids are only intentionally used for hyperthermia, or forced cooling in something like cardiac arrest to preserve brain function. I’m sure if you were really hot in summer, it might feel good, but actual cold fluid can be jarring to the body (vessel spasm/heart irritation) so I’d avoid that.

It’s not likely safe enough for me to get a PICC or port due to clotting issues, so I receive my saline peripherally, too. I generally don’t get fluids unless I am crashing or already down, so my veins are staying okay. I’ve gotten fluids as often as 2.5L every other day. During that experiment, I felt as good as I can imagine...  but we also found that my IVs don’t last a week like we planned they would. Needing a new one every other day at best isn’t sustainable for me.

It doesn’t matter how much salt and fluid I take in by mouth - no medication or other intervention helps as much as IV fluids. That includes sequential compression devices on my legs and DDAVP. Other stuff helps, but not like the saline.

I hope you can get this figured out, even if you only have access to fluids for as needed use. I would surely benefit from regularly administered fluids, and I don’t do very well without them, but for me, it doesn’t seem like an option. I’m very grateful to have them when I need them.

It drops my BP but I’m usually okay if I only take 5mg and get right in bed. I take maybe a tablet twice a year.

I’m allergic to NSAIDs and Tylenol does nothing for me, so I’m in a particularly bad place when it comes to pain. I use a TENS often and that does help... I use hot packs when I can tolerate them (they can worsen my low BP), Lidocaine patches, and distraction. It’s not great!

Tramadol makes my Dysautonomia much worse and I was told to avoid it without even mentioning that. 

My insurance doesn't require a referral, but the specialists always do. I'm told "sometimes ANAs are just positive for no reason and it doesn't mean anything". Mine wasn't ever until a few years ago and it is consistently now... the lowest it's been is 1:80 but usually 1:160. I can't find anyone to see who has a decent reputation, anyway. I guess there are a lot of bad ones around.

i keep bringing it up to my doctors, saying I really think there's something worth checking out here, but I don't have anyone to see. I don't have a lot of joint pains, but I am tender in a lot of places. My other inflammatory markers are okay, though. ESR, CRP, etc.

I saw the bad guy in June. His clinic discharged me and they won't talk to me. They are extremely dismissive. The guy told me I don't have lupus or RA, which I knew, of course!

I saw a highly regarded hospital's rheumatologist who was the most dismissive, abrupt, unhelpful person ever. He started with "this is a dead end". I don't think any of my doctors will send me to another one - they barely wanted to send me to him, and then they were justified  He didn't touch me and barely looked at paperwork or talked to me.

My pattern is homogenous and nothing else, other than immunofluorescence, comes up positive. I feel sick all the time, though... 

I'm barely functional. I collapse, wobble, black out, or pass out often. This while I'm on tons of meds and interventions... 15gm salt, 3-4L water, compression stockings, tVNS, sequential compression devices, etc. I really haven't had a lot of definitively helpful or positive results, other than my renin being high, a positive ANA, loss of weight, bone spurs and arthritis on my neck and back MRIs, my HR being high, etc. I haven't gotten to try lactated ringers yet, and now the only MD who might help with that "no longer works there", yikes!

Doctors say it's not important or worthwhile to measure my blood volume. They're sure it's low, and they're already doing everything they can do increase or help with it.

I do think I may be autoimmune, but doctors have been dismissive despite consistently positive ANA.

I keep going until I can't. I used to get to 170 or so from walking. Now it depends on how I'm doing, but metoprolol has tempered it somewhat.

I get really bad chills, crawling scalp, and "cold" chest pressure from midodrine, worse with higher doses. I don't have any side effects at 2.5mg but it's a pain taking it that often, and I'd certainly benefit from larger doses, even every hour. I never have high BP - I didn't as a teenager before I got sick, oddly. My BP is less than half what is was then. Yesterday it was 72/40 after all of my meds maxed out.

 DDAVP seems to help about 1/4-1/3 as much as a bag of saline. The beneficial effects are the same, it's just milder, and I can get headaches and and malaise which I don't get from saline. Being a pill, though, it's great to have. I do get a boost in my BP, less dizziness and weakness, etc. although it can mess up your salt balance. I had a very hard time getting it prescribed, but I am so sick, I sort of need all the tools that exist.

I have clotting disorders, so although one doctor said it's time for a port and regularly scheduled IV fluids, it's risky for me. They are $30 a day copay and I am trying to save some of my veins (new IV every time), plus it takes about 10-18 hours to "properly" run the fluids because the slower they run in, for me, the longer they last. I still don't get more than 36 hours' benefit out of 2 liters of fluid, which is a major factor in my not doing them more often. I have to hang around the house hooked up for all that time, risking wrecking that vein, just to get a day and a half of relief. However, fluids fix EVERYTHING for me and I feel better than I ever do without them. I may try to get lactated ringers' soon so I can see if that lasts longer. I use them about twice a month lately because of all these factors. I can use them every other day if I want to - I mostly use them when I am desperate or need to be doing a little better.

I'm not sure if it was me you're referring to, but I do take 2.5mg midodrine hourly a lot of the time. I don't have amazing results with it but then nothing is really super helpful for me except for IV fluids, and to some extent, DDAVP. I am allowed to take 60mg midodrine but I don't - I've only done that a couple of times and the side effects were too much. My BP is still quite low despite a lot of medications, salt, fluids, compression, SCDs... 

It's great that he can manage 7.5mg midodrine - if it were me, I think I'd ask if it's okay to take that much every 2 hours if that's how long it lasts. I'm assuming he doesn't have high BP at any time. I was originally told to take 10mg every couple of hours - that did not go well side effect wise. However, I think the overlap must be okay.

Metoprolol is the only thing that has improved sleep much for me. It partially quiets the pounding tachycardia. I do sometimes use melatonin, theanine, or valerian root to "cover up the sick feelings" and make it easier to sleep despite them. Magnesium taurate or glycinate has seemed to help, too.

I haven't tried clonidine although I am sure it would help - my BP is far too low for me to use it.

I have two 15lb $30 ones. One is not baffled or quilted so the weight clumps up badly. The other is great... it's quilted, and is super soft. I really love them and feel they help my BP to be a little higher, plus I do think they help me to sleep. I actually layer both even though that's supposed to be too much weight for me. I got them at Christmas Tree Shop and Job Lot, respectively. The non-baffled CTS one could be quilted yourself... the price is right! Good luck!