What do you do when sitting or standing becomes too difficult?

[Abe]

I am really struggling today.  Hoping someone can tell me how they get through days like this.  I feel like I am going to pass out every minute.  Walking through the house or even to the kitchen is a big burden.  Can't seemed to calm down and even though I have been here before, it all seemed new.  Scared to check my blood pressure because if its too high, it will drag me into a panic attack.  Sleeping has always been a problem.  Without the Benzo, I'm rarely able to get to sleep with the bodily pain and sensations.  Thanks.

[Pistol]

@Abe - I have been in your shoes many times, and the only thing that helps me in a severe flare like that are IV fluids. I used to be unable to stand or walk, and had to crawl to make it to the bathroom without passing out. This often ended up with me having to go to ER for IV fluids, and my PCP usually admitted me to hospital for 24 hours of IV fluids. This ALWAYS, without fail, fixed me right up. MY high BP and HR would drop to normal and I could walk and be active again without passing out. After several trips to ER and hospital my PCP gave me a standing order for IV fluids as needed ( 1 - 2 liters of NSS over 3-4 hours as needed ) and I could go to an infusion center or urgent care center to get the infusions. 

In my personal experience, IV fluids could get you out of your current crisis, they are a known, effective and often prescribed treatment for POTS flares and POTS exacerbation. 

Here is an article related to this, written by Dr Grubb - a famous pioneer and authority in everything dysautonomia related:

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome - PubMed (nih.gov)

[cmep37]

Pistol's advice is great if you live in the US but if you are in the UK your chances of getting IV fluids are next to nil so I will chip in with what I do in your situation (and yes I have been where you are more times than I would like to remember!).  Sadly the only thing that I have found that works is a combination of rest and time!  I try to lie down (whether in bed or on a couch) and do a very small amount of exercise every 30 minutes - sometimes it's getting up and walking/crawling to the bathroom, sometimes reclined  leg raises or stomach crunches, sometimes just lying on my back bicycling my legs in the air.  I make sure I keep drinking - around 2.5 litres a day, at least half of this electrolytes, I eat small regular meals and I avoid any type of stress.  When I get that ultra-panicky feeling of too much adrenaline in the system I spend 10 minutes doing square breathing - breath in for 4 , hold for 4, breathe out for 4, hold for 4.  I find focusing on counting helps calm me down a little.  I will use sleeping tablets in a flare if necessary although never for more than 2 nights in a row.  I remind myself that I have never failed to come out of a flare (it is so easy to think that you will be stuck like this forever) and that I just need to give it time.  I have always found that fighting a flare and trying to push through only leads to it lasting longer and being worse than if I roll with it from the start.

[CallieAndToby]

I just lay down. I mean I know it sucks but that's my only option. I have a lounge chair outside that I lay on and I have a wedge to prop my legs/feet and I can lay outside at least. If you can take it easy and lay on the couch. I have been having major trouble sleeping and I agree that benzos really help with our condition. 

[Pistol]

I second everything @cmep37 said: when IV fluids were not available I would rest, rest and rest, with bed exercises increased to tolerance every hours or more. Ever so slowly I would always improve. And for me too it was a learning process to not get too disappointed with every flare. I used to think each time I would be stuck in that flare but I always recover. Today I just shrug my shoulders and rest until it blows over!!!!!

[Abe]

Thank you all so much @Pistol@cmep37@CallieAndToby22.  Really appreciate all your comments.

[yogini]

There are many many times where I have had to take a day or two off of life to stay in bed.  If I simply can’t handle standing or sitting, I generally don’t.  I find my body knows when to push and when to rest.  I do think it is important to check your vitals when it is happening, though, so you can be aware of how to correct/adjust.

[cmep37]

On 5/25/2021 at 9:42 AM, yogini said:

I do think it is important to check your vitals when it is happening

I tend to take my BP and pulse morning and evening every day and I will do a quick check if I feel particularly awful at some other time but I know when I was newly diagnosed I took them far too often and got slightly obsessed by it which I don't recommend!

[Abe]

My anxiety level is pretty high (almost all the time of day) and checking my BP tends to spike it acutely too so I have held back from checking it.. I have been trying to only check my heart rate and O2 levels once or twice a day because I tend to over-do things. How I wish this flare only last for few days but they sometimes take weeks or months for me.

[Bobannon]

Yesterday I brought a chair into the kitchen because I figured it was better to be safe than sorry. I had to wait outside of my vet’s office for my dog on Tuesday and it was very hot/humid so I planted myself in a hover-sit in the doorway and that kept me from completely losing consciousness, although I’m pretty sure a passerby thought I was urinating or high. It is what it is. lol 

I have not yet had issues with sitting but I can only imagine how daunting that must be. Is there some way you can work up to it by gradually increasing your angle in bed in the mornings?

[E pots]

On 5/24/2021 at 7:01 AM, cmep37 said:

Pistol's advice is great if you live in the US but if you are in the UK your chances of getting IV fluids are next to nil so I will chip in with what I do in your situation (and yes I have been where you are more times than I would like to remember!).  Sadly the only thing that I have found that works is a combination of rest and time!  I try to lie down (whether in bed or on a couch) and do a very small amount of exercise every 30 minutes - sometimes it's getting up and walking/crawling to the bathroom, sometimes reclined  leg raises or stomach crunches, sometimes just lying on my back bicycling my legs in the air.  I make sure I keep drinking - around 2.5 litres a day, at least half of this electrolytes, I eat small regular meals and I avoid any type of stress.  When I get that ultra-panicky feeling of too much adrenaline in the system I spend 10 minutes doing square breathing - breath in for 4 , hold for 4, breathe out for 4, hold for 4.  I find focusing on counting helps calm me down a little.  I will use sleeping tablets in a flare if necessary although never for more than 2 nights in a row.  I remind myself that I have never failed to come out of a flare (it is so easy to think that you will be stuck like this forever) and that I just need to give it time.  I have always found that fighting a flare and trying to push through only leads to it lasting longer and being worse than if I roll with it from the start.

Any good other sleeping tablets ..except benadryl.   I am afraid because its anticholinergic that it will basically do the opposite of mesinon (a Rx that is an  anticholinesterase given for POTS)   i took it a couple years ago and it worked but the next night was awful. 

[E pots]

On 5/25/2021 at 4:42 AM, yogini said:

There are many many times where I have had to take a day or two off of life to stay in bed.  If I simply can’t handle standing or sitting, I generally don’t.  I find my body knows when to push and when to rest.  I do think it is important to check your vitals when it is happening, though, so you can be aware of how to correct/adjust.

So do you lie down and walk?  I'm struggling to know what to do here.  I'm soooo uncomfortable sitting. Standing. Lying down.  All bad.  So I walk alot but that's uncomfortable too but it distracts me but I think make me progressively more agitated nauseaus and tachy but I feel cols uncomfortable squirmy and anxious sitting lying. Standing

[Pistol]

7 hours ago, E pots said:

Any good other sleeping tablets ..except benadryl. 

I take low dose Ativan, o.5 mg, on evenings when I am too worked up to sleep. When I take it 1 hours before bedtime and avoid electronics etc it puts me out like a light, and the next day i might be a bit groggy but no bog deal at all. But I only use it sparingly b/c of it's addictive properties. Another medication my PCP prescribed for me that helps with sleep is the muscle relaxer Cyclobenzaprine. During flares my muscles tighten up from the elevated adrenaline and I get spasms as well as seizures. So 1/2 of a cyclobenzaprine ( Flexeril ) helps a lot on those nights. It is a non-controlled substance, so my PCP has prescribed for insomnia before.

[Pistol]

7 hours ago, E pots said:

So do you lie down and walk?  I'm struggling to know what to do here.  I'm soooo uncomfortable sitting. Standing. Lying down. 

Exercising several times a day can help with that. I use a rowing machine or do mild aerobics. Exercise helps use up some of that penned up nervous energy, I rest until I feel stable, then I exercise depending on my abilities that day and then rest afterwards. In between I do chores, but ONLY to my tolerance. On bad days I simply rest, on good days I am more active, I too don;t feel good when i have to be inactive for too long, but keeping active to tolerance helps with most of my symptoms and prevents the feeling you describe. 

Also - when I have to stay in bed I stay active with knitting, folding laundry etc - this distracts me from the misery!!!!!!

[Bobannon]

2 hours ago, Pistol said:

I take low dose Ativan, o.5 mg, on evenings when I am too worked up to sleep. When I take it 1 hours before bedtime and avoid electronics etc it puts me out like a light, and the next day i might be a bit groggy but no bog deal at all. But I only use it sparingly b/c of it's addictive properties. Another medication my PCP prescribed for me that helps with sleep is the muscle relaxer Cyclobenzaprine. During flares my muscles tighten up from the elevated adrenaline and I get spasms as well as seizures. So 1/2 of a cyclobenzaprine ( Flexeril ) helps a lot on those nights. It is a non-controlled substance, so my PCP has prescribed for insomnia before.

Clonazepam has similar properties to both meds and isn’t as addictive as Lorazepam (Ativan). Maybe something to consider talking to your doc about? One pill > two. ☺️

[cmep37]

I use Zolpidem/Ambien but only take 5mg which is half the standard dose.  I won't take it any more than 2 nights in a row (I have only taken it once this year as low dose Trazodone (I take 150mg between 6-7pm) has helped my sleep enormously).  With Trazodone I actually feel sleepy around midnight-1am and the night-time adrenaline surges have decreased dramatically.  

[yogini]

On 5/26/2021 at 8:25 AM, cmep37 said:

I tend to take my BP and pulse morning and evening every day and I will do a quick check if I feel particularly awful at some other time but I know when I was newly diagnosed I took them far too often and got slightly obsessed by it which I don't recommend!

Yes, but helpful and important to check during an episode.

[isa5]

If you can't get IV fluids (I'm in the US and my prescriber wouldn't even consider it) you can also try very aggressive oral rehydration salts. I use the Trioral brand (available on Amazon) and while they taste nasty at first, they are head and shoulders better for me than other things I've tried (Nuun, SaltStick caps, Pedialyte). One packet in 32oz water is the rough equivalent of 1L IV saline. I found them easier to get down if I added ice and drank them quickly through a straw; I also started by not using a whole packet as the taste is, ahem, distinctive. Hope you are taking good care.

[MTRJ75]

I use a scoop of Ultima electrolytes first thing every morning with my meds and then once a week or if things get really rough I have Drip Drop Electrolytes which was endorsed somewhere or other for some type of condition. I can't remember. I also can't say how much of a help it is or not because it seems to vary. 

I also don't know what to do in these situations sometimes. I find it strange that I'll often be up and things don't hit me hard until I sit down and try to relax. Lying down might be a wonderful option if I had the option of being non-functional. Today, I actually drove (a short way) during a flare up because it felt easier than arguing with my family why I can't again. Maybe I also wanted to drive the point home to myself that I might be more capable than I thought if necessary.  

[Pistol]

5 hours ago, MTRJ75 said:

Maybe I also wanted to drive the point home to myself that I might be more capable than I thought if necessary.  

You know I encountered the same exact thing, but I found out the hard way that if my body tells me no it MEANS NO! I am homebound and don;t go out much, and sometimes I think that I might be able to but am afraid that a certain event or activity will cause a flare - so I avoid it. BUT - if I do go or push myself despite this inner warning system, more often than not do I pay for it. So I listen to my body - I can tell when I feel good enough to do something, and I also know when I am not well enough. But it takes time to learn to tell the difference!