RecipeForDisaster

8 hours ago, kmichaelson said:

Thanks so much to all of you for your help! This is such a caring and knowledgeable community. 💖 I'm feeling more positive about things today, but I was just so shocked and discouraged by how completely unhelpful my doctor was yesterday. I appreciate all of the information about how you get IVs and am going to look into some of the options you all have mentioned. Great advice about a local Facebook group as well. You all are great and have made me feel more hopeful!

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.

58 minutes ago, Pistol said:

Dont apologize, you did an awesome job! When I first became symptomatic noone ever even had heard of POTS ( they spelled it pott's disease 😂 ). I went online and typed in tachycardia and high bP and slowly but surely I found what ailed me. I printed out articles and took them to my wonderful GP. He said " looks like we know what you have but I dont know how to fix you! ". He referred me to the autonomic specialist I wanted to see and while waiting over a year I saw - and fired - 4 cardiologists of various degrees of ignorance and dismissal. When I saw the specialist he not only confirmed my diagnosis but over the years helped me find the right treatments. ( This part can get tricky because it takes a lot of trial and error ). 

All I can say is that you are doing exactly what you need to do right now. Hang in there, there are so many people here that were in your shoes and we all made it. So can you!

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

11 hours ago, Macho319 said:

@MomtoGiuliana I am seeing the Cardiologist at UCLA who diagnosed my Preload Failure on 6/28. I plan to ask him what he can do for me. I almost feel bad asking because after reading some experiences on here I feel like mine aren't as bad. They are still extremely difficult to deal with though. This is all still surreal to me and I'm trying to handle it the best way I can. Thank you for taking time to respond. I am very grateful. 

@RecipeForDisaster You make perfect sense. Thank you for taking time to respond. I appreciate it. 

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.

2 hours ago, dkd said:

Thanks everyone. I actually own 3 and I'm trying to figure out which one would be the most beneficial.

One goes from top of hip bones to ribs (6.25 inches). It's a little uncomfortable because it sticks into my ribs.

One is shorter and goes from hip bones to just over my belly button, not all the way to the ribs.

And the most recent the Dr recommended is actually a lower back brace but covers the mid to lower abdomen also (it's the 3 belt adjustable kind).

I guess I just need to figure out which one I will actually wear!

I was mainly wondering if it needed to be higher or was wearing it lower okay.

Thanks again!

 

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. 

On 6/3/2023 at 9:32 AM, IbeatPOTS said:

I'm on Acebutolol 200 mg 1x daily in the morning (now down to a compounded 100, let's see how that goes). This drug is not meant to be taken at night. 

Metoprolol is absolutely horrid in my experience. I didn't have my 12.5 mg dose of it for one day while transitioning from the hospital to home (ah yes, they didn't think to give it to me in the hospital then) and I woke up the next morning with a heart rate of 183. The drug also gave me severe night sweats, insomnia, bad dreams that I couldn't remember, and I woke up every morning with a heart rate of 150 on it (in other words, it worsened my adrenaline dumps). The drug did not help.

Beta blockers in general aren't a good idea for dysautonomia, IMO. I had a severe POTS flare, was in the hospital for a month because of it and I couldn't move basically (in other words, I was totally bedridden). Tried all kinds of meds, but the day I realized that medication is just a bandaid for my symptoms, I was like no, I don't want to be on medication for the rest of my life. 

What helped me was brain training, peripheral nerve stimulation, and a set of functional neurology assessments. Those things, walking and neuro anti-synergy exercises, lots of sleep, and a good set of nourishing vitamins (B1, B12, D + K2, copper -- from diet, not in pill form), is the only way I recovered from this. 

Now about a month later of doing these things I can walk and I'm nearly back to my old self. 

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.

4 hours ago, Sarah Tee said:

This thread was helpful because I am giving pyrostigmine another try. The first time I took it, I felt generally unwell and also I think it upset my bowel. Can’t quite remember the details, just that I felt miserable for a week and dropped my iPad and cracked the screen. (It’s still working but I blame my specialist for the crack!)

I am starting very slowly this time, half of the dose he wrote on the prescription. Seems to be okay so far.

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

16 minutes ago, Sarah Tee said:

@RecipeForDisaster, I was just re-reading this thread. 37%! Yikes!

The research I read had the control group losing an average of 2%, and the OI groups losing about 20%.

In the Australian support group that I’m in, a member with POTS mentioned getting a SPECT scan to check blood flow to her brain. It was done lying down, but still showed deficiencies to the frontal and parietal lobe. The deficiencies were mild but still considered evidence of impairment. It was done not for diagnostic purposes but to use in applying for disability/income assistance.

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.

9 hours ago, Nin said:

Do you think 500ml would make a difference? I don't think I could ask for more as I just said it's for dehydration. If I start telling him about pots he might say no to giving it to me. How long do you think the affect would last for me?

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. 

6 hours ago, Macho319 said:

Here is the link I presented to UCLA about the NAFLD component for my current situation. There is an “Obstructive HFpEF Phenotype” that presents with low BNP (I have), high to normal cardiac output at rest (I have- 2 caths 1 high 1 normal) and impaired cardiac output augmentation with activity (I have- iCPET). They are only doing the additional cath for data purposes. Their management recommendations are the same. Up my Salt, 3L of water per day, compression socks, abdominal binder and exercise. 

 

https://www.sciencedirect.com/science/article/pii/S2452302X21002606

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.

3 hours ago, erinlia said:

Ok, thanks so much.  Hearing what it does and doesnt do for some of you is really helpful.  

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.

4 hours ago, DonnaD said:

I know it's been years, but I am hoping someone will answer.  What happened when you took all 3 Northera, Mido and Fludo????  Already taking Mido and Fludro and doctor is recommending northera as well. 

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!

4 hours ago, Sarah Tee said:

@RecipeForDisaster, I’m sorry to hear your friend didn’t get any progress from having the test. I imagine it might have cost a lot of money too. Oh dear.

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.

4 hours ago, Sarah Tee said:

Okay, found it. It is called an invasive CPET or iCPET, and the person who has used it to investigate CFS is Dr David Systrom.

Info about the test:

https://www.uclahealth.org/medical-services/pulmonary/pvd/conditions-treatments/invasive-cardiopulmonary-exercise-testing-icpet

Some of Dr Systrom’s research:

https://journal.chestnet.org/article/S0012-3692(21)00256-7/fulltext

It seems like the standard CPET is fairly widely available but the iCPET is specialised. Do correct me anyone if I’m wrong.

Both do however seem to be aimed at investigating shortness of breath, although maybe Dr S uses them to look at it in a different way.

I do get a bit puffed when I’m symptomatic, but I don’t think I have actual shortness of breath. Maybe if I went for a jog? Usually I notice my exercise intolerance at home when climbing the stairs or doing squats. Mine is more like having no energy reserves to power my muscles than being short of breath.

Edited to add: There are also references to a two-day CPET. That is having the test twice, on consecutive days.

https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/

https://neuroimmune.cornell.edu/research/physiology/

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. 

On 4/20/2023 at 2:31 AM, Sarah Tee said:

@RecipeForDisaster, I’m sorry it has come with difficulties. I’ve suffered several ongoing “injuries” from medications so far (even after I stopped taking them), and I’ve only been on lower-risk treatments.

Do I read right that it is helping in general? I do hope so.

I’m a lot less ill than most people posting here, although I have been getting worse for 18 years, and I wonder where it is heading. So IVIg would not be indicated for me at the moment, but maybe it will be in the future. I feel like there is an auto-immune or auto-inflammatory condition bubbling away under the surface. I wish it would just make itself known so I could get onto a targeted treatment.

I also have another problem, had my large bowel removed to treat ulcerative colitis, and the surgery has failed recently after 15 years of working well. If I just had one to deal with, I would probably be able to have a more normal life, maybe do some work from home.

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.