Not much "Upstairs" today, but...

Morning community friends.

I need your thinking hats to be put on for me.

My baseline BP is 115 / 75. Heart rate is 65. I have spells where BP falls to 90 / 60 and stays there but heart rate remains somewhat stable.

Last Thursday, heart rate rocketed to 110 and BP fell below 90 / 60. The heart rate stayed elevated for while. As you can imagine, body did not take to kindly to this event. Many odd and unusual sensations and rather nasty prolonged effects.

It always takes me lot of time to sort through and research what may have caused those nasty effects and sensations.

I finally ended up in the "S" section of my library where the book entitled "Shock" jumped off the shelf into my hands. I did not know that one of most accurate gauges of shock was when heart rate / systolic BP (top number) ratio goes outside of .5 to .8 range. My ratio during the event came in wee bit higher than .8 and stayed there for a test drive. Rough road.

So if you ever want to know if symptoms of shock are true, you have my testimony of it, at least what I remember.

Now to tap into the collective wisdom of this group.

Many different kinds of shock including circulatory and neurogenic. But at the cell level, what I basically understood was that lactate would build up and pH would fall causing all sorts of havoc.

Have any of my friends here ever gone through this science project activity? Has anybody ever had lactate levels tested in comprehensive blood panel? If so, did they test type A & B?

Big question now.

How did body overcome this problem on its own? I do not understand sequence here.

Took 36 hours post event to feel bit better. Doc said get to emergency if event had continued. But it slowly resolved.

One note: when something radical like this event happens, body and brain seems to shoot right past the normal neurologic deficits that I associate with my symptoms.

Does this mean symptoms could happen when the event in my body is there but not at a level that is detectable at the threshold of true shock? A kind of mini shock?

I am just a patient with access to library. Not making this stuff up but keeping BP monitor in my holster now.

Give it a go. I just graduated from third grade and that was because I learned to bring my teacher food each day...

Love you all. May our Sunday bring comfort and relief.

Dan and family / Seattle

[nurmihusa]

That's weird cardio stuff! I get spikes in the other direction. 170/120 when having an FND attack. So I got nothing to offer, except the suggestion that this IS the the sort of things docs DO pay attention to.

[Ronwyn]

My bp is always low dr said that low is better than high even when I have fainting spells like what the !

[Hidden in reply to Ronwyn]

Ronwyn.

BP seems low to me. No matter what I do physically it does not want to increase. More activity more it wants to fall. But heart rate rarely moves. All seems strange. Thanks for letting me know I am not crazy as when BP fell while heart rate spiked, body just went nuts.

Dan / Seattle

[patti86]

my HR has been running higher than my usual..blood pressures are also off. been low and then higher and then low...feel like my heart is going all rogue on me.....all i could get my cardio to say is with all of my heath issues its only understandable i am not as active and so de conditioning can be a viable reason to cause the HR to be elevated. seriously.

Dan, I wish I could give you more info....but I am not sure what to say. except. when in doubt push to get the doctors to check it...even if it is to prove to you all is well. right? they want us to believe that it is our brains controlling it all...well prove it!

[Hidden in reply to patti86]

Patti86.

Great advice. I accept ! That roller coaster was all downhill last week. I agree with you. My brain was sitting on the sidelines watching that show. You made me laugh.

Thank you so much.

Dan

[Hidden]

Hi I'm maybe missing a bit but lactate and pH changes in the body are very serious. They can be caused by a number of things too large to mention here but if your lactate and pH is abnormal you need to be in a hospital straight away as you are very ill. You don't say what you were doing when you had the BP HR changes. Was it during an active or inactive spell?

I think a lot of people on this site are having changes in HR and BP and it's not ok to say this is part of the condition as both can be dangerous. I recently had changes but also had an organic illness so put it down to that. I might start getting more checks at my local doc.

I hope you get it checked out 🤔

[patti86]

Dan, I loved the comment about the brain being on the side line. That made me laugh. I think it's important to be able to laugh about all of this. 🙂

I did see you mention LDH levels being off. Do you know your levels? Mine are Hight too. Which is Interesting....since no doctor will explain why I'm consistently high only stating it's a non specific finding. Got to love how doctors love to tell us that it's non specific and just ignore it. You know. 😳. I think Amelia is correct. Best to see if they will expand on that test more. From my non medical google MD reading, it is generally elevated due to tissue damage. Best of luck and thank you again for sharing in such a away that made me smile and laugh. We need more of that. Perhaps that will be the best treatment for us all. Well at least till doctors can get out of the corral and realize there are many zebras who look a lot like horses....only they have unusual stripes. 😂

[Hidden in reply to patti86]

patti86.

Follow up to other post...

I am now first donkey to be painted with stripes. Can I still call myself a zebra? That sounds much better than being a donkey!

Laughing through the morning.

Here's to good cell health. Tricia says I need to be exfoliated. I am not sure what that is but will try anything...

Dan / Seattle

[Hidden]

Amallia and patti86.

Thank you, thank you, thank you....

You provide answers I needed.

Amallia, the first abnormal HR and BP reading came when I felt weakened and a bit ' funny' after I put a load of dishes in dishwasher. Just kind of normal around the house stuff. Never causes either figure to change for me in past. I sat down, then lay down. Only remember getting up a bit later to see if readings had returned to normal. Only remember thinking HR was still too high but do not remember what reading was.

By that time was engulfed in series of odd sensations, weakness, variable muscle twitches, odd feelings in chest and moderate impairment. Just stayed down. It was into next day before things kind of calmed down.

I now know to ask for LDH. That part has not been tested in past few years.

I know it all sounds dangerous. Just can not financially afford more non specific findings anymore as Patti86 put it. Either I am ill or not. They have to decide. I am not a doctor. When reported it, doc said go to hospital if it did not return to normal. Well, it now back in normal range but I think damage done.

Please don't think badly of me for how I go through this. First thing hospital sees when they open my chart is FND and from that point on the bias takes over and objective judgement disappears. It has depleted our family in so many ways with money being only one issue.

I try not to curse. This diagnosis is so darn destructive when it conceals other conditions.

I hope to survive. I really do. Now knowing how serious the LDH and pH can be, I will try and stay more alert.

You both tremendous asset to community. I gotta go do a load of dishes now. OK, you gotta laugh at that please.

Much love.

Dan / Seattle

[Hidden]

Hi Dan, also maybe you have picked up a bug like a mild cold or something you haven't really detected as this could increase your HR. Also as I'm sure you would know sitting and standing or exercising HR and BP are different so it's getting to know your normal rates. You said you keep a BP monitor I would also check temperature for abnormalities.

I used to be an athlete and had a low HR normal BP but was going for surgery and the junior doc doing my pre op assessment freaked out at my HR of 36 beats per minute. I explained I was a runner and had finished night shift 4 hours before and my body was in sleep mode even though I was awake (struggling) but he made me walk miles to the ECG lab where my results were normal.

Iv been sick recently with multiple viruses (that time of year) and it's taken a few months to start to feel better but it has also had an effect on my FND as during one hospital admission all limbs were in spasm i think due to being unwell and really needing to rest. My obs have also been weird like very high BPs which I never have and I get flu a lot, the real one not the one people complain of every winter but iv never had high BPs so maybe the Neurological side becomes more overwhelmed with a regular illness and affects our HR and BP?

[Hidden in reply to Hidden]

Amallia.

Thank God you are here. You have such awareness of the finer points. I not an athlete but worked hard at physical activity all my life. Am very careful to take BP / HR under same conditions each time. Have very poor walking ability using cane so most activity occurs doing house chores.

Baseline rates rarely change with any activity. Problems start when BP starts to fall - both top and bottom numbers. Heart rate stays stable. The spike in HR was big time exception for me.

Then, the odd 'funny' sensations in chest, head, etc. Maybe did pick up a bug. Temp just below normal.

Boy, I think you right on mark with last statement. Went into abnormal movements few minutes ago with that flutter feeling in chest. Have to see if resolves. May be a bug.

Have two nurses sending me conflicting messages now. I bet HR of 36 did drive them crazy. They think everybody is same.

We are not! Be back soon. please feel better. Need you!

Dan / Seattle

[Hidden in reply to Hidden]

I was having my first good week last week which was why I got so many comments in but this week I'm suffering a bit. Took 4 hours to send an email today as hands have a life of their own. I'm giving up on housework. I used to clean religiously once a week then fortnightly then tried doing it in stages on different days but iv gotten to the point where once a month in stages is too much and I find when I go for a shower I'm beyond exhausted after cleaning and can't raise my arms. Last time I was really dizzy and rushed to get out and blacked out for about half an hour, I think the hot steam maybe lowers my BP and the exercise and this condition all contribute.

Saving up for a home BP machine now and a cleaner.

[Hidden in reply to Hidden]

Amallia.

Get the home BP machine. Best thing ever as we have stairs to go up and down.

Forget the house cleaning. Tried to catch up today and BP went in the tank. Afterward, HR started up. Now the chest gets into the action.

Doc called and gave me talking to... I lay low now as I may have to go see her.

Hope you feel better. We keep trying.

Dan / Seattle

[Hidden in reply to Hidden]

So I have a lot to learn here as I was diagnosed and kicked to the kerb. I didn't know this condition altered your obs, HR, BP and I'm assuming breathing. When I'm having a really bad day I have to move from one room to another and sit down as my legs and arms are like jelly and I'm struggling to breathe. I didn't used to have the breathing problems. It's great when you have no doctor to ask these questions to. I'm definitely giving up on housework and getting someone in. I feel also if I dont have to do this I can concentrate energy on something more useful or just relax depending on how I feel.

Thanks Dan

[Hidden in reply to Hidden]

Amallia.

I don't know what it causes. Really.

For years, I fought off horrific symptoms to keep working. As late as 2009, I could still run a delivery truck route.

Now, at times, my family watches me try to get from sofa to kitchen sink and stops me when it looks like I am going to keel over.

No chores today. Wait for doc to message about HR / BP. Will write letter advocating more research into what is going on with us.

To a better day. Thanks given to you Amallia.

Dan / Seattle

[Hidden in reply to Hidden]

Ok hope you're feeling better soon. Am now struggling to type this week

[Hidden in reply to Hidden]

Amallia.

Know you feeling unwell. Please read this for info only. Respond back later if you feel like it.

Followed up on reference to whether deficits could affect HR / BP, etc.

Again, went searching and found science on nucleus ambiguus and nucleus solitaries in medulla.

These have neurons heavily involved in cardiac functioning and parasympathetic outflows including breathing.

Only guess that if these centers did not function properly, could see types of things you and I experience.

I just went through a 40 point drop in systolic pressure in a matter of minutes which sent me reeling. All while diastolic and HR remained stable.

And people wonder why I am unable to get around without help.

Take care. Good thoughts and support from Seattle.

Dan / Family

[Hidden in reply to Hidden]

Hi Dan,

The medulla oblongata at the base of the brain controls breathing, HR, BP etc it also controls vomiting which I must have forgot, I just looked it up. When I had my accident I was vomiting every 5-10 minutes for over 24 hours and couldn't control my temperature. I was told my body was just in shock but I had swelling and bleeding in the brain in that area on MRI. I was always told that MRIs are the gold standard for testing but after my 2nd MRI a radiologist told me they can miss things and he thought I had a snapped ligament in that spot they just couldn't see. Fortunately that was overseas as iv never had an MRI done in the U.K. Even though I also had a head CT done overseas which showed a possible small infarct (stroke) which could have happened after the accident it's seems il never know. My original injury was neck and back with other symptoms from this which keep piling on. I wonder how many FND people started with a neck injury. Even if not the whole strange and worrying drops or rises in obs (I call them obs for observations) is trauma related or other?

But I think you are onto something there.

Hope you are stabilising. I just lie on the floor. Especially if iv walked 30 seconds from the supermarket with 2 bags of shopping my arms and legs die and iv never thought about BP but considering I have to lie on the ground I'd say it's low. Need to get a machine.

[Hidden in reply to Hidden]

Amallia

Thank you for real life pieces to puzzle. What you have been through....

Technical readings get tougher for me now days. I think it takes high level specialists with sophisticated imaging to deal in brain stem function. I will never get there.

Flat for now. Try again tomorrow.

Dan

[patti86]

You can absolutely call yourself a zebra! So much better than a donkey don't you think?

[angelite]

Hi Dan, 'tis me again : )

I am wondering if you are experiencing some form of autonomic dysfunction ?

healthline.com/health/auton...

I 've had the copious sweating ( literally running down arms at rest ) BP drops ( eg. 89/50) both on standing and after standing for 10 mins ( often followed by adrenaline rush when I have collapsed with low BP ) and even a nice little 1/2 hour hypothermia ( 34.6 degrees - shiver ! ) during relapses. Sadly my GP passed the hypothermia event off as 'shivers from a possible virus' lol - clearly he did not believe me. Adrenaline is very useful - it can up BP, glucose,heartrate etc if your system goes awry. Interestingly, my sister would collapse when her thyroid began to fail, followed by a rush of adrenaline, the body's emergency system, that would enable her to get back up and have a ten minute window of function again, just like me ! To those docs who mistake all adrenaline rushes patients describe as panic attacks, I would ask why administration is effective at treating low BP in medical conditions - it seems that some of us can have very effective emergency system boosts of our own !

doctorshangout.com/profiles...

livestrong.com/article/2037...

Lots of food for thought ! Angela : ) x

[Hidden in reply to angelite]

Angela.

34.9C ! That is cold. I used to have extremes in the 35.5 range and I thought I was going to freeze.

So, the progression gets odder as I get older. I used to sweat profusely. I have not done that in years. I gave up tracking temp because always below normal. I wear coats in house and sleep under so much covers it is absurd.

My stride is so small and my endurance to walk or carry something so limited it is a wonder I get anywhere at all.

Adrenaline surge now only when autonomic extreme such as major heart rate spike. Approaching condition similar to shock. You could rob me at gunpoint and I would not feel any fight or flight response. Used to be I would get adrenal rush if tried to get across street before signal change.

Angela, I know you are right that autonomics not functioning right. I understood right away when lost 70 pounds of body weight in nine months because of GI suppression that docs could not explain with any test findings.

I speculate some of it has to do with how long I have been fighting these deficits. Body and brain just worn out from it. I also suspect getting older is changing physiology real fast. Normalcy curves shift and brain thinks things are supposed to be this way now.

What's left? I don't know. Do believe that cardiac stability and function are declining. Don't know at what rate though. May need more tests and meds.

I only offer up this opinion. Chronic long term duration of neurologic deficits symptoms not good. It is only "harder to treat" as they say because they can see it begin to emerge in actual organ disease yet they did not take time to find cause when they should have so still behind the curve. Still treating symptoms instead of cause.

For younger folks, keep the heat on docs to test everything under sun. You don't want to celebrate 25 year anniversaries this way.

Many thanks and love to you Angela. You very special to me.

Dan / Seattle