Is this a crash?

[bananabas]

OK, I just bought the attached lap desk from Ikea.

The problem is I usually end up lying down after a very short while and the legs are not long enough to be able to use it in that position.

 

[bananabas]

I don't know. I haven't had any, but I think there are. Perhaps another PR member can chime in here. My doctors have just treated based on symptoms -- if the treatment works than you probably have the condition. Not very scientific, but reasonably effective and cheaper than a lot of tests.

It seems this page has some more info on testing and treatment for dysautonomia.

 

[bananabas]

Low pulse pressure is one indicator (not a definite test, just an indicator) of low blood volume. You could check your PP first thing in the morning and see if it's normal (~40) or low (<30 or 35).

Since these kind of measurements seem to pop up quite often, I was wondering, what device(s) do you guys use for measuring blood pressure, heart rate, etc.

 

[Sushi]

Since these kind of measurements seem to pop up quite often, I was wondering, what device(s) do you guys use for measuring blood pressure, heart rate, etc.

Many of us have a blood pressure machine from the pharmacy and heart rate monitors. You can find threads evaluating different heart rate monitors. They are found easily online or in sports stores for varying prices. It is important to have one that allows you to change the batteries yourself as they only last a few months.

 

[bananabas]

Many of us have a blood pressure machine from the pharmacy and heart rate monitors. You can find threads evaluating different heart rate monitors. They are found easily online or in sports stores for varying prices. It is important to have one that allows you to change the batteries yourself as they only last a few months.

So isn't there an all-in-one device, that you can wear throughout the day and would monitor both blood pressure as well as heart rate?

 

[ukxmrv]

So isn't there an all-in-one device, that you can wear throughout the day and would monitor both blood pressure as well as heart rate?

I borrowed my "other half's" running monitor to so this. It has a chest strap. Only problem is that when my HR/BP gets really erratic then none of the devices I use can pick it up.

I also have a BP monitor that goes around my wrist and a HR one on my finger.

These are all very old now and I don't have the money to upgrade them.

http://uk.pcmag.com/activity-trackers/159/guide/best-fitness-trackers-for-2015

 

[bananabas]

I borrowed my "other half's" running monitor to so this. It has a chest strap. Only problem is that when my HR/BP gets really erratic then none of the devices I use can pick it up.

I have one of those strap things, from Garmin. But it doesn't show BP though, I'm not sure how a strap could measure that.

 

[WoolPippi]

OK, so what is it then? I've had this for years and found no explanation so far.

Does anyone else experience this? It's like I need to "turn off the world" every now and then in order to be able to continue.

PS: some nausea is also usually present at that point.

I have the exact same thing. Daily. I was never concerned until you suspected it might be a crash.

I see it as a necessary recovery time mid morning. I have a second one after noon and the last few months a third one in the evening.
They are exactly like you describe: block the whole world, try not to freeze. I've conquered the nausea by always taking HCL or lemon juice after breakfast. Sometime I can knit a bit, with closed eyes. Still very much covered in woolen blankets and cold.

In my mind, it's related to digestion. And cortisol/adrenals. It happens about one hour after my breakfast (I can postphone lying down but I'll feel increasingly bad). When I lie down, after a while, my stomach begins to rumble. This is my stomach emptying small bits of food into the duodenum for digestion.
My theory: cortisol/ME-body/brain cannot handle stomach acidity; digestion; blood pressure and body temperature all at once.

I use it as a time to try and "reset" my body into safe, relaxed modes. Breathe, relax, wearing big industrial ear mufflers.
But you've got me a bit worried, I though everyone with ME who isn't bed bound has these episode.

I know what these aren't though (for me):

• they're not adrenal crashes. With adrenal crashes you (or rather I) get disorientated and slurred speech and slow.
• not acute dehydration. (disorientated & giddy)
• not low blood sugar (shaking, growingly panicked)(also monitored and proven not to be)
• not 100% thyroid either, that gives a different type of coldness, in my experience. (it may be thyroid with you, I don't know how your cold feels). It may be a bit of thyroid though.... circulation, cold hands...

my ME crashes are different too. I'm either too wired to lie down. Or I'm so exhausted I just tumble into bed and fall asleep right away, nausea and all. The "I give up, I'll just lie down and wither" type of crash. Both take at least 10 days to recover from.

What this is I don't know. I view it as part of my daily pacing but I sure wish it didn't take an hour nor leave me so groggy.

Edit: read to end of thread. Will look more into Orthostatic Intolerance for myself. I thought I was ok because I no longer am light headed now that I supplement with Hydrocortison which has some Aldosteron-properties and drink lots of (salted) water.

My resting HR has gone up over the years, from 45 bpm before illness to 60 pbm with ME and hydrocortison. BP is holding at 90/60 which is a bit too low but not as low as it was when severe ill.

 

[WoolPippi]

I just remembered: when I was healing last year (I was up to 80% by x-mas!) I still needed to take these lie downs.

Only needed the one in the morning. Could read and knit engaging things as long as I was laying down, with elevated feet. It was not easy to do when you really want to zoom about and do things. But it was very important.

 

[Sushi]

So isn't there an all-in-one device, that you can wear throughout the day and would monitor both blood pressure as well as heart rate?

Not unless you want to drag a whole Intensive Care Room full of equipment behind you! At least nothing I know of. What we do is wear an HR monitor and check our BP now and then -- some several times a day, some only occasionally.

 

[PatJ]

OK, I just bought the attached lap desk from Ikea.

Here is another option. It has multiple legs with 360 degree locking pivot joints for different configurations. It looks like the top surface slope can also be adjusted.

 

[taniaaust1]

I do have a laptop, I just don't see the mechanics of using it with my feet raised. How do you suggest doing that in practice?

I have a laptop which I always have to use legs up. I do tend to move around quite a bit on my chair due to this and having to keep changing postions as it isn't easy having legs up when using a laptop so I chop and change positions frequently while typing. Sometimes I have a stool under my desk with both legs up on it, some times Im diagonally straddled between two computer desks with one foot on stool (knees bent right up) and one foot on a computer desks drawer which I pull up to use as a second foot rest..

or right now Im sitting like this photo I just took. note my knee is a lot higher then my computer and Im typing around my leg with the other knee dropped sideways. Hard to see in this photo the stool my feet are resting on but have my stool right in front of my seat, the stool is only a few inches lower then my chair (the tiny bit of black between my feet is my stool).

The other photo is how I use computer drawers on another computer desk to also put my foot up on.. I do this if I need both my knees as high as my chest level eg if Im having a bad POTS day. ( then slide the computer so its slightly over the edge of my desk more so Im sitting not as twisted though Im still slightly twisted when I sit like that).

In my understanding, dysautonomia can be anything affecting the autonomic nervous system, which regulates things like the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. OI is the development of symptoms when standing upright which are relieved when reclining and POTS is a particular case of this where the symptom is an abnormally large increase in heart rate when standing. The tilt table test seems to be the golden standard for diagnosis.

Some POTS patients can be so bad they can have trouble just standing up, some get POTS badly just from sitting up.

(trying again.. forgot to attach the photo of how Im sitting at computer).

 

[taniaaust1]

Not unless you want to drag a whole Intensive Care Room full of equipment behind you! At least nothing I know of. What we do is wear an HR monitor and check our BP now and then -- some several times a day, some only occasionally.

My uncle was wearing a wrist heart rate and BP monitor which gave off an alarm if his BP screwed up when he came and visited me the other day. It was quite a nice looking wrist device, it was just the size of a normal watch. (I'm going to find out more about it as Im interested in getting one like his).

 

[Sushi]

My uncle was wearing a wrist heart rate and BP monitor which gave off an alarm if his BP screwed up when he came and visited me the other day. It was quite a nice looking wrist device, it was just the size of a normal watch. (I'm going to find out more about it as Im interested in getting one like his).

If you find out what device combines a BP monitor and a HR monitor, please let us know. An Apple watch maybe?

 

[Sidney]

To back go back to the first post: so much of this has become my 'normal '!
I have not found it possible to get up to do anything, before 12 PM. I do a few little chores, make breakfast, and take it back to bed. If there is an unavoidable task or appointment before 12 or 1 pm I feel sick and dizzy and malaise lasts for days.
Afternoon tasks have to be short. Only one commitment a day!
An evening engagement ( which I dread, but not as much as losing friends) needs the afternoon before in bed.
Brain work, or stress - for instance, rushing - is absolutely just as tiring as physical work. The brain uses a huge amount of body's energy production.
I do work on my computer in bed in the mornings, but am flattened after half an hour; then I get up and do a physical chore for 10 minutes, and try to get back to work for a bit.
Your hands! I don't know if you are the same, but I am freezing by the time I've made breakfast. I have Reynauds disease as well as Sjögren's etc, which means that your hands are icy and dead white, like a dead body's- the best thing is a soak in a bowl of as hot as you can stand water. This can happen several times a day, depending.
I hope this isn't too discouraging- be careful!