RecipeForDisaster

I was so excited to see someone with very cool POTS stickers all over their water bottle in the bathroom today, but I didn’t have the guts to say hi because I was with family! It would be so cool if we bumped into each other there. Thursday 4/21 in Boston, late morning/noon!

8 hours ago, MikeO said:

@PistolI and Glad you are able to make the IV port work for you. I know it is not for everyone. Like you there is a infusion center about an hour away from me i just can't see making frequent trips and pokes to get a drip.

I swear 2019 was the magic year when my symptoms really flared up and have not been able to retain fluids we are seeing it reflected  in my metabolic panel as well as my recent angiotensin-renin tests, my PCP keeps blaming it on me being dehydrated despite that i do take about 2qts of fluid a day.

Last week out of the blue i made a chicken broth and ramen noodle soup (1 can store brand chicken broth and 2 cups of herb-ox chicken bouillon which is high in potassium) i felt really good for a couple of hrs afterwards but was short lived.  

 

I make ramen several times a week, using a lot of vegetables, tofu, and either good quality ramen packs from the Asian market, or homemade, very salty broth and noodles. I love it - but I am not sure how much it helps. I crave salt, but I don’t know that I get a big benefit from all I eat.

On 4/12/2022 at 6:46 AM, MeAgain... said:

I am wondering if that holds true for drinking as well. I have a tendancy to guzzle water. I am going to try to slow down while drinking and see if that makes any difference.

Unfortunately, not for me. I sip all day, even salted water, and it doesn’t help. I only drink to "be good", because it does not seem to help me.

49 minutes ago, Pistol said:

@KiminOrlando - same here, every time I am in hospital I am on a heart friendly diet without any salt - while they are pumping saline in me! So I carry a saltshaker with me wherever I go!

Haha! There are 9 grams of salt in a liter of saline!

I have a travel salt shaker in every vehicle, purse, bag… I find it useful for one meal or so before I have to refill! Sometimes I just crunch on the salt. I enjoy it, so I’d rather do this than take capsules.

Good luck! I have a saved search on eBay because I need another leg sleeve. The prices on the machines and sleeves vary wildly. I think I paid about $100 for the machine and one sleeve. I switch legs, which is not great.

Oh, and the other weird thing about some of us, me included, is that if you run the fluids quickly, they don’t help much, we pee it out, or it wears off quickly. So, for me, I have to stay tethered to an IV for as long as possible, which is the 17 hours or so I stay out of bed… to get the 2L slowly enough to have maximum benefit. It’d be really nice if I could do it over 8 hours like pretty much all patients getting hydration. It seems like we have to slowly sneak the fluid in so our bodies don’t dispose of it,

Oh yes, I’m always hearing nosy people watching me eat say "OMG SALT IS SO BAD FOR YOU!!!". In those cases, I might tell them I’m on a high salt diet and that I have low BP. I do sometimes have to admit I "pass out" if it’s coming. I put salt on ice cream, and everything else, so people notice. I do crave it to an extreme. I carry it everywhere and pretty much don’t eat anything without it. Mind your business! I could tell you some other things you are eating that might be bad for you, but I don’t know your medical history, nosy people!

Exactly! You guys are just like me. I use 15gm salt and 4L water daily, plus some other electrolytes. They make little difference, but 2L IV lactated ringer's is miraculous and does not make me run to the bathroom constantly. Unfortunately, it now only lasts me about 36 hours, though. I used to get enough benefit from less fluid and it used to last longer. It’s a bummer, but still a very helpful tool to have… 

Compression does help me, but I need 40mmHg which is too difficult for me to put on. Heavy weighted blankets are helpful.
 

My TTTs have not involved anything IV, so that is interesting.

I really wish we could figure out what’s wrong with us. I have no diagnosis other than general stuff like hypotension and autonomic dysfunction. Why can’t I keep my BP up with these interventions?

18 hours ago, mehaller said:

Thanks all for the comments.  I don't expect miracles.  I am just trying to get an edge on exercise - which so far ... meh.  I did have a great day last week where I was able to spend an hour in the garden with only one feet-up respite in a zero-gravity chair.  Very encouraging.  But, the next day I was wiped, and it's on those days that I feel I could get some value from the sequential foot/calf/thigh compression sleeves.  

I still don't have a dx yet, awaiting tilt table and other autonomic tests.  I will say that my orthstatic BP tests are showing an improvement in HR bumps, down from mid 30s to mid 20s.  Water and salt are all that I've been advised to take pending the painfully long awaited Autonomic battery of tests.  It seems all those specialty labs are swamped - long haul covid folks seem to share a lot of POTS symptoms - so I am told by the few who would speak. I know I am better off than many folks with POTS - I can still manage a shower, and kitchen detail for ten minutes at a crack, needing only five minutes off my feet to venture back to cooking for the two of us.   I need to figure out if I can get better enough to get back outside - my sweetie has taken on all the maintenance tasks, and that isn't sustainable for her either.  

@RecipeForDisaster, can you share which brand of sequential leg sleeve system you use.  Also, none that I looked at nor the myria of useful "un-boxing lookie what I bought" youtube reviews really describe the sequential aspect.  Does yours cycle from bottom to top over X minutes, or is it just at initial inflation?

Thanks again for the responses.

Mine are medical ones, Circulflow 5150 model. They can be set in many different ways. It does cycle from toes to thighs over the time you set. I actually got them on eBay because I think DMEs only rent them.  
 

It makes me recover faster when I’m close to passing out, and feels good when I’m laying down. I just wish they were lighter or more portable, because I’d have them on any time I’m stationary. They are upstairs, so I can’t use them while I’m working or anything. I don’t think I can use them sitting, either, because they straighten my legs. They have saved me from losing consciousness several times. It’s like elevating your legs, but much better. I am too exhausted from putting 40mmHg compression stockings on, even thought they do help once on. Less than that doesn’t help enough. I still think this is more powerful, but less convenient. 

I use sequential compression devices on my whole legs in the evenings. They definitely help me feel better. It’s just that I have to be laying in bed and can’t move, even to the point where I can’t turn them on and off on my own. My BP is very low and I have blood pooling, so it kind of milks the blood up. Exercise is better, but I can’t exercise nonstop…. 

1 hour ago, Pistol said:

@RecipeForDisaster @MikeO @Nin - I am very sorry that you all feel you need to hide your illness. Please know that at least here you are welcome to say what is on your mind and heart. I - for one - totally get you, and I am proud of you surviving every day. ❤️

Thanks! It is wonderful to be able to freely share here. I kind of have a double life, but I’m used to it!

6 hours ago, MikeO said:

What i have found that works for me (remember that's me) is not to bring up any of my limitations outside of my kids and a couple of care providers. If the subject does come up outside of my circle i just politely don't answer and change the subject (usually works). 

Me too. I’m very private about it, only sharing with a few select friends and almost no family just to avoid this same situation. It’s hard to hide, and I don’t get to vent or ask for support much (especially bad since I can’t travel to appts or tests alone), but it’s been worth it for me. It’s particularly challenging since I look mostly okay, and my illnesses are not well known or understood.

1 hour ago, edriscoll said:

@dlgrn715 the symptoms you describe on a perfect description of a regular issue for me.  I bring my granddaughter to the supermarket to do most of the bending for me.  It is difficult.  Other than the normal recommendations for hydration and sodium, I was taught to improve my O2 by taking a deep breath through the nose before bending, then exhale through pursed lips while bending to pick something up.  This has really helped with quick bends, like grabbing a shoe but I doubt it would do much for housework.  But every little bit helps. 

@RecipeForDisaster  I also have issues with anything that uses my arms too much, especially over my head.  It lets me out of washing windows, which I like, but it makes it really difficult to wash my hair in the shower.  

I describe the "feeling bad" symptoms as feeling like a power tool that is slowly wearing its battery down as I go through the day.  Not all days, but many.

All of these things are common for people living with different forms of dysautonomia

Best wishes for all.

Oh yes, over the head is the worst. Even just holding my arm out for a while is intolerable, like if I’m holding something out to someone and they don’t take it immediately. 
 

I am careful not to let my doctors think my major complaint is fatigue. Not that fatigue isn’t horrible - I feel like I’m bleeding out, more than being fatigued. All of the symptoms of shock are with me every day.

Yes, I just say it makes me "sick". There are a lot of bad feelings in my body that I don’t have words for, and I doubt most people would ever understand that. There’s some kind of emptiness in my neck and chest, for one. I don’t do a lot of housework, and I do feel bad, but it’s just the way it is. Stuff that involves bending over, squatting, or making large motions with my arms - even stirring batter - are not very doable.

4 hours ago, supertired said:

@Castorp @RecipeForDisaster - for the Mestinon, I have a script for 60mg 3X a day - I can't really tolerate that though, as I get tremor with it... so I take it "as needed"... like, if I *have* to get up and out the door for an appointment, taking one can make the difference between being able to get out the door and not. For me, I feel the effects of one pill within 10-15 min or so, and it lasts for about ~4 hours. So if I'm having a weak day and need a little extra strength, it can help a bit. It does mask the signs I'm going to pass out though, so I have to be more careful if I take it. And like I said, the tremor it induces is small, but annoying. (and seemed to cause some weird interaction with some nasal sprays I was prescribed and made the tremors really, really bad.) but this seems very unusual.

FWIW - for the IVIG, justified by biopsy - you can remind your doctors that if your SFN biopsy comes close to the cutoff - that the cutoff is pretty arbitrary - and that really understanding your results depends on your "starting point". so if there is clinical evidence/opinion that justifies a dx of SFN, that can help not being tied so closely to the exact SFN biopsy percentile. but, obvs, approval depends a lot on your insurance and how much your doc thinks it's justified.

i have a really hard time with IVIG... i'm one of those cases that has to have insanely slow rates, and infusions spaced weekly apart. been on it a long time now - i think i'm probably going to be one of the "non-responders", but i want to give it it's due just in case - i've come this far, lolz - would hate to have to start over with the "it may take a year or more to start working" 😕

interesting that the supplements may help neuropathy... i'm excited to start trying that... 

I have very good insurance that doesn’t give me a hard time about much. I doubt I even need the biopsy for them! I have every sign of neuropathy as well as autonomic problems… I feel like my feet are buzzing all the time, I get the burning numbness, pins and needles, etc. My nurse case manager sounded like she could get IVIG approved for me just because, but I think the neurologist treats me like any other patient with average insurance. I don’t blame him.

I dread having that sort of relationship with IVIG, but I figure I can get a lot of hydration with it and be a step ahead. I have orders for that already.

2 hours ago, Castorp said:

Thank you so much for your replies.

@supertired, in my opinion IVIG is clearly worth trying if there are signs of autoinmunity (e.g. positive antibodies,...).  In fact, IVIG  has been used increasingly with significant efficacy in the treatment of autoimmune forms of dysautonomia and small fiber neuropathy. As an example,

https://www.karger.com/Article/Fulltext/498858

Unfortunately, there is not one-size-fits-all solution in these diseases, and not all patients improve with IVIG. Nevertheless, theoretically failure to respond to IVIG does not preclude a  positive response to other immune-modulatory therapies such as plasmapheresis, rituximab ororal immunosupressant drugs (e.g. Cellcept). However, taking into account the potentially serious side effects of these other treatments, I think that it is a good idea to start with IVIG.

I have used acetyl-l-carnitine and coenzime q10 because their ability to enhance cellular energy production. Nevertheless, as with all the treatments I have attempted during these two years, these supplements did not have any effect on my crushing fatigue.

In view that currently I have no treatment,  I am thinking about attempting mestinon again.@RecipeForDisaster@supertired, what dose of this medication do you take? How long did you have to wait before see the effect its effect?

Thanks again for your help.

 

I just saw my neurologist yesterday and he confirmed he is interested in IVIG - BUT I a have to have the right findings on my biopsy, even though I have an insanely high (and increasing) IGG abs FGFR3. 
 

I take 2-3 180mg extended release pyridostigmine tabs daily. I’ve never had side effects, and it didn’t take long to see mild effects from even 60mg 3 times daily. 

Mestinon helps me about 15%. It’s worth taking it but not by a lot. 
 

At least acetyl L carnitine and alpha lipoic acid help my neuropathy. My neurologist confirmed yesterday that he is interested in trying IVIG if my biopsy comes out with eligible results. I did dread IVIG, but I dreaded iron infusions and did fine with them. Hopefully this would also go well.

I would love to follow you because you sound similar to me, and I’m so let down that these things didn’t help you. I haven’t gotten to try the autoimmune parts of your trial, because I am waiting on a biopsy to try to qualify for IVIG and I don’t have any of my 17 doctors working on the immune end very well. I thought steroids could help, but I may have too much cortisol already, because my eosinophils are persistently 0.

I have very low BP and no POTS.

I’ve read about things like Ubrelvy being used for CFS, and one doctor mentioned this to me (but I guess he lost interest in me when I couldn’t do the invasive CPET). You could also try different beta blockers - I don’t think I’d get ANY sleep if not for mine. DDAVP is somewhat helpful. IV fluids are the only thing that is super helpful for me. Adderall is good, but it’s a pain to get. It doesn’t help me sleep, and I badly need to do that… good luck and keep us posted!

5 hours ago, MikeO said:

@RecipeForDisasterwhen you had this test done did you have to withhold meds for 72 hrs?

Some of them, yes. I’m not sure I remember which!

Ugh, I’m super allergic to NSAIDs.

1 hour ago, MikeO said:

well bit more sharing for inquiry minds. here is what the urine kit looks like.

Been there, done that. Got slightly panicked after about 16 hours when it was clear I would not be able to fit 24 hours worth in there. Found a way to get another container!

2 hours ago, Bobcat said:

I do not sweat either & my nose has started running a bit & eyes tearing sometime. I have to sniff & carry a tissue! 

Me too. My eyes tear for no reason, my nose runs often, yet I really don’t sweat. Ipratropium nasal spray helps the runny nose, at least.

Okay, that makes me feel better! I remember that you said that. I don’t have hyper POTS and didn’t even have out of range epinephrine/norepinephrine/dopamine. I just want to sleep! I feel like I’ve had lots of caffeine before bed.

59 minutes ago, ramakentesh said:

Ive had small fiber neuropathy diagnosed twice. Other than itching and not being able to tell temperature in my feet luckily i had no other symptoms. 

That was the striking thing for me. No ability to tell temperature in my legs and feet. I didn’t know until the (4th) neurologist tested it recently. I am itchy randomly, like I have a tick on me, here, and then there, but I never connected it to neuropathy. I have horrible burning pain in my feet at night, though.

I’d love to try a little clonidine. I was up all night last night - relaxed and sleepy but heart so uncomfortable despite lots of beta blocker. No one will let me use clonidine and I don’t know why. My BP is low, but they give me other stuff that lowers it, and I’d be in bed.