RecipeForDisaster

Glad to help! This is really a supportive and smart community. Some of us find that slower IV fluids and using LR instead of NS are more beneficial. It stinks that my 2L takes 16 hours or sp to run in, but I get longer lasting effects that way. Just in case you get it quickly and find that it wears off too fast.

I have standing orders for IV fluids at home when I need them. It’s through a home infusion company, and I can use my husband to start the IV because he’s a nurse. Then we run the fluids ourselves, slowly. Most people use the company's nurses for that. I do use them to administer the IVIG that I also need.

Off topic, but there IS a Pott disease - at work, people enter that one by mistake all the time. It’s tuberculosis of the spine, so quite different! https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjW2J-svvL_AhULFlkFHb9ECsAQFnoECBMQAw&url=https%3A%2F%2Femedicine.medscape.com%2Farticle%2F226141-overview%23%3A~%3Atext%3DPott%20disease%20usually%20results%20from%2Csubchondral%20plate%20is%20usually%20affected.&usg=AOvVaw0JWhpTwM3-IoqMdF9M1oxD&opi=89978449

Haha, I don’t know if anyone has EVER told me that - thank you! I know a lot of people encouraged me to just go on disability and quit working. It’s part of my identity, I can do it perfectly from home and I really like it. It gives me a feeling of accomplishment, I enjoy my work, and although I miss my coworkers terribly, I am grateful to have it. Plus, it’s nicely distracting when I am really uncomfortable.

It was not easy, but I got my company to allow me to work from home with doctor's paperwork each year (even though it says "permanent need"). It is pretty crucial - sometimes I can’t sit up, I get IVIG and hydration at home, I use various devices that are not portable, I still pass out… this way I’m very productive and yet safe, and don’t have to have incident reports filled out for me. I once had to get notes from cardiologists stating I COULD go to work, because they were so freaked out about me being on the floor. I didn’t know then that my job could be done from home.

I have never found my triptan to help with anything but a migraine. It doesn’t seem to worsen anything, though. They even had me try it for trigeminal neuralgia.

I feel awful after eating any amount of anything, but it’s worse with a large meal, especially if it’s heavy or has a lot of white carbs. I make myself do it anyway, but it makes everything worse. Palpitations and pounding, chance of passing out, lightheadedness, you name it.

I might layer them! I found that the back brace kind didn’t help much. I couldn’t get it tight enough. The "postpartum" abdominal binder is stiffer and stays in place better. I’m short, so I can’t deal with the ones that dig into my ribs, which is not uncommon.

I have a 3 part (3 belts/layers) one that covers the hips to the waist. It’s good because otherwise it’s difficult to get the tension right.

That’s great that those things have helped you. I don’t have POTS and have complicated and severe illness. I’ve tried just about everything (including tVNS & probably 40 supplements over the years) and still rely on my beta blockers for symptom control. The cardiologist who wants me on acebutolol (partly for ventricular ectopy) is a big deal in a major city, and he seemed surprised I couldn’t take it at night. So, it works well to use the two different beta blockers - I’m now on metoprolol at night and acebutolol in the morning. I would never be able to sleep with the bad pounding that I had before metoprolol. A lot of stuff I use is a band-aid, including IV fluids, although I’m hoping that IVIG is the fix for a lot of what’s wrong with me, and I will be able to taper off everything! It hasn’t happened after almost a year, but I’m told it might take two. I have never stopped my healthy diet or my exercise, though.

People definitely have GI issues with it. I don’t, lucky me!

That’d be interesting, too. I’d do it just to know and to help research. But yeah, I understand now why I feel so awful when I’m upright, even sitting without my feet up. There is also other stuff wrong with me, so this is not helping.

It’d be worth a try if that’s all you can get, especially if they run it slowly. I don’t usually feel better until I’m more than halfway through a liter, but we are all different. You might feel better for 8 hours after, or a day, or a week! Some people get fluids monthly and that’s enough.

I get 2 liters of lactated ringers, sometimes saline instead, when I need it. I run it very slowly, because the benefits last longer if I do. I find it makes me feel better in almost every way for a few days.

Makes sense. That’s why I’m not too sad that I can’t do the iCPET. I’ve had those recommendations (4L water and 15gm salt) for over a decade. The guy here has no other ideas other than pyridostigmine.

The nice thing is that you can split the IR tablets, so if they want you to try more, you can go in 15mg intervals.

That’s interesting. There’s a doctor in Boston who does iCPETs on dysautonomia, ME/CFS, etc. patients, and while I could not do the test due to risk factors, my friend did… she was diagnosed with preload failure and offered pyridostigmine. I’m already on it anyway. I do think it helps somewhat, but not enough. A lot of us here have symptoms similar to yours…. Unfortunately, I’m still not fully diagnosed. I have autoimmune small fiber neuropathy and HYCH, hypocarbic cerebral hypoperfusion, plus just chronically low blood pressure and perfusion all over. It is like I’m in shock all the time.

I can’t deal with my bounding pulse -without- metoprolol. I’m sure it could be opposite for you, though. But when I have to go off it, or I’m sick, it’s unbearable. It just softens it for me.

I take a lot - they keep trying to titrate me upwards because I’m not doing well. I take 180mg ER 3 times daily, plus 60mg IR 1-3 times a day. It does give me some strength and ability to exercise and be upright a little more, helps my low BP a little, and definitely helps my thermoregulation. If I take it, I can sweat a little when it’s appropriate. Without it, I don’t, and I have trouble keeping warm or cool. So, for me, it’s helpful… but nothing helps enough. I get fasciculations if I take too much, and that’s the limiting factor.

Wry exciting! Then they’ll need an ICD10 for low blood volume.

I take midodrine and Northera, but licorice root instead of fludrocortisone. I couldn’t tolerate it and it didn’t help much, but licorice helps without causing any issues. I’ve done fine with these 3 (plus many others) and I need all the help I can get!

It did. The arterial line and jugular cath are more important to me than the money, personallyI guess Systrom can deduce mitochondrial function using this test. He also really wanted me to do it. I’m relieved that I didn’t - mine would likely come up with the same findings as my friend. Basically, he offered her Mestinon if she wanted, and that was it, permanently. I’m already on it.

My friend had this. It’s pretty invasive, and yes, harder to find than a regular CPET. You do exercise hard, with catheters, so I think I’d be short of breath. She "failed"(notable findings) with very low preload during exercise, and didn’t end up having any recommendations for it in the end. She wanted me to also do the test, and I’m glad I didn’t, because she is back where she started. She has actual POTS and I don’t.

I would just love to have this done. I wanted to do the Daxor test, which is supposed to be at Yale, but no one wants to order it.

IVIG is helping my SFN only, so far. I definitely have other autoimmune disease (same, mystery, a few clues like ANA but nothing useful), and we hoped IVIG would accidentally fix those. Hopefully! I would not hesitate to have started IVIG for my SFN years before I did, because the damage might be milder.