RecipeForDisaster

I have these, too, and my BP isn't much better when I am lying down. I also have both types of sleep apnea and use a CPAP which gives reports. I have a pulse ox which is somewhat uncomfortable to keep on my finger all night.... I had the overnight oximetry study professionally done and that night I literally never got to sleep, i was not doing well enough to ever fall asleep. So, my results were fine because I was awake! I've used mine a couple of times and gotten borderline results, but I wasn't sleeping soundly or for very long when I wore it. I figure I can present the recordings to one of my doctors if needed. Sleep is definitely one of my worst issues. 

I'm really sure it's low, partly because of my response to IV fluids. I haven't had it checked... I am going to ask but I bet no doctor wants to order the testing. It's a few hours away at Yale.

I tell doctors that the best way to describe my overall feeling is that all of my blood is the floor and I've had too much caffeine (heart pounding wise). 

You actually can bathe. The monitor itself comes off any time, the electrodes can stay on in water or be switched out. I didn't have much trouble with mine other than skin irritation an drew sometimes signal issues. 

For me, I don't know if my BP dropped enough. I just got labeled dysautonomia. 

My BP is low all the time, it does vary with activity and position (and does not increase when I stand as it should) but I don't even have a good BP lying down. It's too low to allow me to stand and walk without blacking out, so I am orthostatic but I believe it's mostly because I am just too hypotensive to do those things. That's why I wonder what is really wrong with me. 

This resonates with me. What DOES help you? Do you feel your complaints are taken as valid by clinicians, without a diagnosis? My TTTs came up inconclusive as well, and meds aren't super helpful. They are better than nothing, but IV fluids are the thing that helps most. 

I know my DO doesn't think it's all in my head. I don't think most of my doctors do (one cardiologist says it may be my minds response to my illness making things worse, but even that is not the case) but they do think I can live with it. Even when I'm on the floor.

i have few friends myself. Maybe one or two I share this stuff with. 

The biopsies definifely made me feel completely different than i than I normally would. So stupid. My BP was high for me. 

I have that same inner conflict. Do I mention this odd, seemingly unrelated symptom to potentially help in diagnosis?

That's awful about your family. I'm glad mine doesn't know anything. I'm pretty good at faking being okay, I guess!

My TTTs haven't come up with much that is useful, but the first one was done wrong, and then second began with very painful and scary biopsies which undoubtedly changed my physiology.

Sometimes I come home from appointments extremely miserable. Most of the time I force myself to stay positive. 

You're exactly right, better to pretend we are really okay than that they don't know what is going on or what to do about it. Once I saw my cardiologist and told him I wasn't up to eating or walking without wobbling over for the past 5 days. He wrote in his summary "glad you're doing better". 

Being here is is helpful because I hardly tell anyone about this. It's too weird, sketchy/fake sounding, and hard to see. I tell people who have seen me pass out or collapse.

I have told most of my doctors that anyone else in my body would be staying in bed 24/7. I still keep trying to stay active and work a few days per week. I'm grateful that I have a few tools I can use to get a little improvement or avoid a crash, but overall I still feel terrible all of the time and something as simple as stirring batter makes me a lot worse. I keep doing everything, though.

I really only have that one doctor who is adventurous in trying new stuff. It is only thanks to him that I have IV saline.

Interestingly, my helpful doctor is a DO. He's a hematologist but I do have known hematology issues in addition to all of the undiagnosed stuff.

i do try supplements and vitamins but haven't had much effect so far.

Quality of life... I don't think doctors have a problem with us having zero. I usually push through and do okay, but there's a tremendous amount of compromise and lying to myself involved.

We'll see. I've only seen this guy twice but I do think he is caring. I'm very glad to have him and he does try to help even though I'm pretty sure he's not my primary need in a specialist. That said, I've thought that about my other doctors, all of whom have basically given up or just told me to get used to it, that we may never have an answer. I even think there is a reason that my baseline temp is around 97.0 (thyroid had been checked, but maybe not thoroughly?) and have been told we won't figure that out.

My first cardiologist even told me avoid any exertion to the point of not walking to the mailbox. He was worried for my safety but I don't think that is a good way to live.

I feel your frustration, although i find help in a lot of the POTS discussions even if i don't have it. Your message resonates with me very much. I know I don't have POTS and I have a lot wrong with me but no diagnosis at all. I'm still working 3 days per week and pushing through the best I can. I'm grateful I have finally obtained treatment but it would be nice to have a name. I think having dysautonomia without POTS is so hard to diagnose, because as misunderstood/unfamiliar as POTS is, something more vague without clear diagnostics is much more likely to be missed/dismissed. i have only told very few friends about any of it, mostly those who have been with me when i passed out. It sounds too weird, fake, or minor. I might tell someone i have problems with my BP if i have to but that's all. mostly, I just fake being well.

i feel awful most of the time and have had long stretches of not being able to sleep, eat, or walk without being dangerously wobbly. My heart rate is inappropriately fast and pounding (but not IST, apparently), but i haven't passed out since being on all my meds, thankfully. My BP is perpetually way too low. I have the temperature regulation issue big time, don't really sweat, my appetite is not normal (sometimes overboard, but usually I need to be tempted to get hungry), I have the muscle twitching, and lots more.

Have you gotten a diagnosis? If you'd like to chat privately, please do so, I'd love another "pen pal". 

I totally agree and if you show up at an ER hypotensive one of the first things they will do is give you IV fluids. It's absurd that doctors are so afraid of it for outpatients.

It's pretty hard to start an IV on yourself even just because of having enough hands. I had a professional license to do so and taught others to for many years. There could definitely be complications from lack of experience. 

I can't have a port (yes that's a minor surgical procedure) or PICC line, so I just keep getting new peripheral IVs. I am sure I would do well on continuous, but unless I stay in bed, it's not practical.

Yeah, it's sort of like, well, you are still alive with this BP so I'm not gonna worry about it. Even when I can't eat, sleep, walk, etc. because I'm in shock. I now have one doctor who will think outside the box and promised he won't give up on me until we figure this out. It's gonna be a long process but he has already found some interesting stuff in my labs that was never uncovered. I wouldn't have these fluids if not for him.

Honestly, I don't even know what specialty I should be falling into. My first visit with the autonomic neurologist in Boston, who wrote many studies I have read, he told me that he had a patient from Hawaii that came to see him and she was just like me. He NEVER figured out what was wrong with her, and he is the expert! Scary huh?

Thankfuly no one has proposed that this is mental, I think it's too obvious that gray cold skin and stuff are not from my mind. However, one of my cardiologists said that the pounding heart may be "from my brains response to what is going on" which is obviously bunk. I can SEE my heartbeat through clothes. I am not nervous or afraid. It WOULD be so nice if they would admit "I haven't seen this before but I am going to figure it out or send you to someone who can". Isn't that what they would like for themselves?

I was afraid of the neurological and digestive side effects, mostly. Some described tongue spasms, and I have enough tight muscle problems now. If you look at the side effect profile it's fairly scary... sweating, drooling, etc. I really didn't get anything except that I do sweat a little if i "should" (it's hot or I am very stressed) where I wouldn't before.

i had to ask about 6 doctors before I got the order for IV fluids at home. A few aid I didn't need it if I could drink (sigh), a few said I could come in and get them administered or prescribed -when I needed them- which of course would be when I can't drive, so that is no help. I do think people with POTS can get to this level but I have some other kind of dysautonomia and probably more. It amazes me when doctors aren't worried about a really low BP but it happens. I think when they don't know what to do they are able to pretend it's not a problem. 

Drinking really never helped me much, it's like even if I drink isotonic electrolyte solutions, I pee them right out. I also NEVER get thirsty. When I get IV fluids, I don't pee them out like that, but I don't understand why. I'm not dehydrated before them, though. I do believe that my body is letting go of oral fluids it doesn't think it needs, and the IV takes that judgment call away by just putting the fluids right into my bloodstream. After 24-36 hours the effect is pretty much gone, so I must be eventually letting go of that too. It just takes so much longer and boosts me quickly.

Mestinon has helped me to regulate my temperature. I'm almost cold blooded, I am too cold when it's cold and too warm when it's warm. 

I am definitely getting worse over time, my BPs are trending down if taken without meds, but I don't have POTS. 

I make my own nutrition shakes. I don't feel like drinking them lately but they are useful. 

I can live without fluids, but i may not be able to stand, walk, eat, sleep, etc. my BP can be in the 70s and I am not doing well in that range at all. A liter of fluids usually boosts me 10 points or so. I don't know if I'd die, but BPs that low are quite dangerous, I get all the symptoms of shock.

FWIW, I started with 15mg of mestinon and worked up to 60mg 3 times daily. I was really afraid of it. 

I was 37, LOL. I have not been treated very thoroughly, had to work for every benefit I got, and had had to suck it up. I still don't have a diagnosis so that isn't now helping. I didn't get these issues until my 20s, at least not badly. I did pass out as a kid and may have considered the other symptoms normal. 

I have a hereditary tendency to too much clotting, and have a rotten immune system, so I don't want a PICC or port even though it would be much more convenient. 

I am glad to have ondansetron for nausea at times. Fluids help nausea a lot when it's from low BP in my experience. I usually get hungry towards the end of the bag. I hope your daughter does well!

I think I wish I had that side effect these days. I would never seek chemicals to improve my mood, but this week my literal worst nightmare came true and I lost my young healthy horse who was my soul mate... then lots of other bad stuff has been raining on me and I am overwhelmed mentally and financially. It has been awful and I've already lost 4 percent of my weight. I could use a boost but I don't like the artificial kind. I want to fix my circumstances  

i don't recall any mental effects, good or bad, from mestinon. I DO notice that I am happier when I feel better (not the other way around) even though I normally don't think I am unhappy at all even when very ill. I cope really well, most of the time. Oddly, IV fluids generally boost my mood a lot... I guess it's just not feeling so rotten, or better brain perfusion. 

My husband is a nurse, I get a new IV each time. So far I haven't been able to keep one working more than 8 hours. Normally they would send a nurse out. I could actually do it myself if I had an extra hand. It's not great but it's better than nothing! I am trying to keep my veins decent so only do the fluids up to 3 times weekly. 

i have no idea what is wrong with me-NO diagnosis!! Probably not POTS but dysautonomia. I have other stuff for sure, like positive ANA. 

I wouldn't say it's super helpful, but I don't have a lot that is! IV fluids, metoprolol, mestinon, and midodrine together get me up to "able to live" status. I can usually eat, get around, and sleep a couple of hours. If i feel I'm not up to eating so I can take my pills, I take a zofran and can usually manage. 

I've been lucky, surprisingly, I thought 60mg 3 times daily was going to be too high a dose, but it helps me without side effects to speak of. I hope your body adjusts... it has helped me to regulate my temperature and sweat where appropriate, in addition to avoiding presycope. I think I did have some runny nose/extra sweating at first but that is gone.

If I miss a dose, I don't get worse than I was before Mestinon... there is no rebound so to speak. I just feel like I did before I started it. Hope this helps.

All I can think of is pyridostigmine... it has helped me although I only have low BP and fast heart rate. It seems like it might be what you're looking for as it for as seem to affect BP or HR directly. It has made me stronger and I have less presyncope and fainting episodes on it. It even corrects, to some extent, my inability to sweat.

I have had times when a liter didn't do much good but I didn't have the guts to add another whole one. I have run in another 500mL bag which helped enough but not to a great extent... I was lucky to get the orders and supplies for 1L! I'd love to try more, and it would be so great to get more than a couple of days' worth of improvement per IV stick...

i run hypotensive, though. When I ran in that extra half liter, I hadn't really had any improvement in my BP after the liter.

You may be thinking of me with the positive ANA, I didn't see the OP mention that. I am still homogeneous positive on the second test two months later. DNA was negative and I believe a full rheumatology panel was run with no answers. At least my c reactive protein and sed rate are not too high.

I don't have any great wisdom for you but I can completely relate to that "there's something we are missing" feeling combined with "I know this doctor knows his stuff". I am sensitive to light and sometimes I do get weird twitches, but those aren't a big part of my issues.

I had low iron and vitamin D and vitamin B12 myself. I was happy to find something fixable but in all honestly restoring those levels hasn't helped much  

I also have to say that I am, unfortunately, completely familiar with that "oh great, I have a solution, I'm getting better, this intervention is helping!" And then 4 days later ending up back in the same spot ON the "miracle" med. It's a massive letdown and scary when you realize there isn't much more to add and this is your new baseline.

i don't think midodrine has changed my heart rate for the worse, in fact, when I need it for hypotension, it brings my HR down a bit. I also take metoprolol and pyridostigmine in this realm and I am now getting IV fluids at home when things are bad. I hope we all find some missing link!