Precursor heads up to a event

[MikeO]

struggled with this one.so i do get the usual stand up lightheadedness so what do we do sit back down most of use knows this.

Then there is the whooshing when i get up, getting the feeling i am unique on this one always delayed but id feel it coming on just after getting up

Worst is when i get up and struggle to take the next breath. I will go down, it sucks. and has been consistent. as long as i pick up on the SOB sitting back down has helped. if it happens after while moving i run into trouble.

[Pistol]

@MikeO - what I personally have found that if you go beyond the initial "Whoosh" and not lie down it is already a lost cause. These days if it happens I just drop. Where ever I am, what ever I am doing ... I drop. It keeps me from getting hurt and from making a scene. ( Although I am in a place where it barely ever happens anymore. ) I am sorry you have to go through this. 

[MikeO]

1 hour ago, Pistol said:

@MikeO - what I personally have found that if you go beyond the initial "Whoosh" and not lie down it is already a lost cause. These days if it happens I just drop. Where ever I am, what ever I am doing ... I drop. It keeps me from getting hurt and from making a scene. ( Although I am in a place where it barely ever happens anymore. ) I am sorry you have to go through this. 

Oh @Pistolas i described events to my providers is i let myself down so that i do not hurt myself same as dropping where you are standinding .and yes going past the initial Whoosh is bad. in public if i get off balance i will drop down and re-tie a shoe whole nother story and has not always worked. I appreciate you knowing some of the issues i have to deal with. 

[Pistol]

@MikeO - hah, I know the "tying your shoe laces" maneuver! I have found myself in walmart sitting on the floor pretending to be extremely interested in the item s on the bottom shelf ... 🤫

[cmep37]

My motto is "Sit down before you fall down and speak up before you throw up!".  I use a rollator when I'm outside the house - I hated the idea at first but was persuaded by the fact it was better than a wheelchair.  It means I have somewhere to sit down wherever I am and as one of my big issues when I'm upright is dizziness and poor balance I feel much more stable holding on to something.  I have actually managed to improve my fitness because of it - I no longer have to have a wall to walk beside!!

[MikeO]

9 minutes ago, cmep37 said:

My motto is "Sit down before you fall down and speak up before you throw up!"

I like both of these motto's. I am a bit slow so it took me awhile to catch on to sitting down before falling down  and i do usually speak before i throw up pretty sure it goes No! No! No!. Glad to hear you gained some independence with the rollator i am sure somewhere in the future i will need one.   

[p8d]

My precursor is almost always getting a hot flash. I haven’t stood up quickly enough to get too much of a head rush in years. I was told that with orthostatic hypotension it takes 30-60 seconds to get to the point of syncope and to move slowly and be by something to grab until I know how I will react. I find that if I know I am going to get up in the next 5-10 minutes drinking a glass of water quickly beforehand always helps. It’s the times I have to move quickly or being upright “too long” that leads to problems.

[MTRJ75]

I just had a disaster of a trip to CVS to pick up this month's bucket of meds (usually have them delivered or picked up, but thought I could do this since I was already on my way home from the doctor). Stood in line for less than 5 minutes with drenching sweats and nausea. Almost had an argument with someone who cut in line, who said I was standing too far back from the person in front of me to actually be in line. Normally I wouldn't have even cared, but it extended my wait in line by a couple of minutes. Had some difficulty on the short drive home. Add the simple act of briefly standing and talking at the same time for more than a minute to the list of things that fire up my SNS. 

This is something the judge asked me about driving during my disability hearing though. I was afraid I was going to lose my license. I told her I don't pass out, always have someone with me when I'm driving a distance longer than 15 minutes and always get enough warning to where I can pull hold up for the remainder of short trips, but there may be h*** to pay afterwards. 

[MikeO]

2 hours ago, p8d said:

getting a hot flash

I did ask my previous Primary about this she just said it was male menopause is that real?

 

32 minutes ago, MTRJ75 said:

about driving

I am very paranoid that i will lose my license. UW Madison did a carotid massage and came out negative sure that is saving me. not sure what the Docs responsibility for reporting.    

[Pistol]

@MikeO @MTRJ75 - I was not allowed to drive for several years due to syncopal episodes while sitting and seizures. The state I live in does not require a physician to turn you into the DMV, so it was kind of honor-system. I have not passed out in almost a year, and no seizures for longer than that, so I no longer need to follow the restriction. However - I never really felt that it applied to me. Despite my stubborn refusal to acknowledge the seriousness of my illness in the beginning - I now am a Pro at avoiding episodes. Plus - when I was at my worst I wasn't able to drive anyway b/c I would never be able to conjure up enough brain waves to be able to concentrate on a road ...

[Pistol]

4 hours ago, MikeO said:

I did ask my previous Primary about this she just said it was male menopause is that real?

I don't think that would apply to dysautonomia patients. Maybe there is such a thing in "normal" men ... ? I always get a feeling of heat and flushing right before I pass out, and I am past the actual female version of menopause ... even before menopause I felt these heat waves come on before loosing consciousness. I think it is a common precursor of syncope. 

[MikeO]

2 hours ago, Pistol said:

I now am a Pro at avoiding episodes.

Ha @Pistoli am still in the pee wee league  but i am taking after your mentoring and hope to be a pro at sometime.

[p8d]

did ask my previous Primary about this she just said it was male menopause is that real?

As @Pistolsays, it’s not male menopause. A lot of us get it. Temperature regulation is part of the ANS. It’s different from when I got menopausal hot flashes got but I can’t really explain how.

I  am very paranoid that i will lose my license. UW Madison did a carotid massage and came out negative sure that is saving me. not sure what the Docs responsibility for reporting.    
 

I am in Wisconsin and my neurologist told me not to drive but never reported it, I don’t know that they have to here. I think it’s mostly epilepsy? I couldn’t drive for years and still rarely do but I did renew my license a couple of years ago so I can vote. There were no questions about syncope. My limiting problem is that I have difficulty processing moving at speed. I can drive a few miles at less than 35 mph but even as a passenger at freeway speeds I have to look at the floor sometimes. I don’t do well with fast panning and zooming on TV either. There’s a thread about this somewhere from a few years ago. 
 

Ha @Pistoli am still in the pee wee league  but i am taking after your mentoring and hope to be a pro at sometime.

I sincerely hope that with long Covid research there will be decent research and treatments before you you become a pro!

[cmep37]

4 hours ago, p8d said:

I couldn’t drive for years and still rarely do but I did renew my license a couple of years ago so I can vote. There were no questions about syncope. My limiting problem is that I have difficulty processing moving at speed. I can drive a few miles at less than 35 mph but even as a passenger at freeway speeds I have to look at the floor sometimes. I don’t do well with fast panning and zooming on TV either

I never drive any more although I have a licence for ID purposes.  I could drive if there were no other cars on the road but I cannot make assessments about other vehicles - deciding how fast they are travelling is a particular problem.  On a motorway as a passenger I shut my eyes as I feel sick otherwise.  I quite often duck watching TV if something appears to be coming towards me, at other times I cannot watch a programme because the camera will not stop moving around and it makes me very disorientated.  

I also get the hot flashes when I'm about to pass out - along with tunnel vision and a whine/ringing in my ears its a sign I need to sit down before I fall down!

[MikeO]

Well i have been working hard at trying to recognize signs of a impending event or i am in a state were i need to use more caution. ( had enough after this last Fridays near event )

So Saturday i was hanging out on the recliner and started feeling really hot and flushed when i went to get up i almost passed out ( I did sit back down right away ) took a couple of tries to get up. i immediately took my bp once i was able to move it was 99/57 ( I am sure it was not that when i was struggling ).

Then last night had the same thing happen while i was putzing in the workshop in the basement ( started feeling hot and flush ) so this time i sat back down on the barstool did some physical counter maneuvers and noticed i would feel really faint or about to blackout. So i went back upstairs and took my bp it was 106/68 ( i am sure it went up by climbing up the stairs ).

 This morning when i woke up i felt hot, flushed and dizzy so i sat on the edge of the bed and stretched same thing felt like i was about to pass out. i got up and blew my nose and almost passed out in the bathroom, took my bp right after and it was 97/63.

I have felt the hot flashes for years along with the feeling that my vascular system was a bit dilated ( faint or dizzy feeling when stretching, coughing etc..) but never matched it up with an actual blood pressure reading. 

I am hoping i am onto a symptom i can react to especially knowing when my bp went low ( squishy vascular feeling ). this might help with when i go full syncope as well. (we are suspecting that when my bp is low and i get a transient drop in blood pressure along with the low pressures is what is getting the better of me )   

[cmep37]

It's trying to find your own personal alarm system - sounds like hot flashes are one of yours!  They are a late warning symptom for me - if I wait until I feel that wave of heat it's generally too late for me to avoid a faint.  Visual and audio disturbances are my early warning - when I start to get tunnel vision/stars and/or a ringing/high pitched whine in my ears that's my cue to hit the decks.  Sadly the only thing that teaches you is experience; the more often it happens, the better you are at recognising the early signs and learning how to avoid the full blown black-outs....

[MikeO]

@cmep37 I am starting to figure it out thanks to everyone's input. Yes hot is bad so i am starting to recognize it. On the other side of the coin i am just freezing right now despite of the house being 75 degrees. My bp is 162/87 far cry from my 97/63 this morning. It does blow having such fluctuations in blood pressure.  

[Nin]

Mike0 my blood pressure is practically the same readings as yours. Im just up and down and I'm still trying to figure it out. My feet are constantly like blocks of ice I just can't warm them up. Funny you said about the whooshing as I get that when I stand I always thought it was a problem with my ears. The funny thing is it hardly happens with my compression socks on and now I've taken them off and the whooshing is back. 

[MikeO]

@NinThank You for the response. My feet do get really cold as well. Just like the rest of my body. I am suspecting it is BP related. I am sure the whooshing is related to pooling of blood in the legs.

[Pistol]

@MikeO - the symptoms you describe having before you pass out are similar to what I notice before a faint from low BP. The cold hands and feet usually happen to me when the sympathetic NS compensates for the low BP by excessive vasoconstriction, causing the high BP. It sounds like you are having more than usual spells right now - true? Whenever I got unstable and had frequent episodes my autonomic specialist directed me to go to ER to get IV fluids, which without fail always improve my situation. After we figured out how much they help me ( I am pretty resistant to medications ) he gave me a standing order for fluids and I could get them at an infusion center or urgent care center. I now get them every 2-3 days and havent passed out in 15 months. You might want to discuss IV fluids as needed for times in which you have frequent episodes. Fainting in itself is not dangerous but the injuries you can obtain can be, so you need to prevent fainting. Many people can stop and prevent their episodes with IV fluids, especially when meds either dont help or the right med has not yet been found. It is a known and frequently used treatment for syncope. 

[MikeO]

Hi @PistolThe IV fluids have been on my mind for awhile but i am still hoping not to have to go that route. I will bring it up with my Dr.

Tania did suspect that i would have issues again while trying to get my really high blood pressure spikes (198/120) under control so, we hope the sodium increase helps ( i do have to give it a few weeks to see what we get ) I am sure she is also thinking about modifying meds again. 

I know just like you i struggle with meds either my body does not like them and fights back or i am just slow to respond (takes months to see how they work).

So can the IV fluids help with a transient drop in blood pressure? or how does the IV work for you?

 

[Pistol]

@MikeO - this is a very touchy subject for most physicians b/c they cant really explain why this works ( although autonomic specialists can ). In my case it appears that my instabilities happen because I have ( proven by lab ) adrenaline dumping in response to BP drops. That causes the blood vessels to constrict severely. But the fluids provide added volume within the vascular bed ( volume in the vessels ) and that in turn creates a stable pressure in the vessels. So it not only stops the autonomic dysfunction but it also prevents it. I used to only get fluids when I already was in a flare, but now I get them several times a week and my BP and HR have been stable. I have never responded well to ( tons of ) meds for dysautonomia, so I am considered medication refractory. Plus - due to severe GERD I cannot tolerate large amounts of fluid, or salt tablets. So - in my case - the IV fluids seem justified and have done the trick. They even help to bring my BP DOWN - I used to be admitted to the hospital every few weeks with syncope and unstable BPs, and a half liter of Normal Saline ( Lactated Ringer Solution is better in my case ) would bring my BP down from high to normal, as well as up from low. And I get sooo much energy from them! I used to joke that "I am getting my cocaine infusion"! So - I am not saying everybody should go get infusions, but in a case like yours, when you keep having syncope or pre-syncope despite med changes, they may stop the instability and just keep you safe by preventing you from fainting. 

I hope this is helpful. 

[Nin]

On 12/15/2021 at 12:08 AM, MikeO said:

@NinThank You for the response. My feet do get really cold as well. Just like the rest of my body. I am suspecting it is BP related. I am sure the whooshing is related to pooling of blood in the legs.

Yeah definitely bp problem (must be when on the low side). The whooshing is the blood pooling, proves it as I said when my compression socks are off it happens more.

[MikeO]

21 hours ago, Pistol said:

@MikeO - this is a very touchy subject for most physicians b/c they cant really explain why this works ( although autonomic specialists can ). In my case it appears that my instabilities happen because I have ( proven by lab ) adrenaline dumping in response to BP drops. That causes the blood vessels to constrict severely. But the fluids provide added volume within the vascular bed ( volume in the vessels ) and that in turn creates a stable pressure in the vessels. So it not only stops the autonomic dysfunction but it also prevents it. I used to only get fluids when I already was in a flare, but now I get them several times a week and my BP and HR have been stable. I have never responded well to ( tons of ) meds for dysautonomia, so I am considered medication refractory. Plus - due to severe GERD I cannot tolerate large amounts of fluid, or salt tablets. So - in my case - the IV fluids seem justified and have done the trick. They even help to bring my BP DOWN - I used to be admitted to the hospital every few weeks with syncope and unstable BPs, and a half liter of Normal Saline ( Lactated Ringer Solution is better in my case ) would bring my BP down from high to normal, as well as up from low. And I get sooo much energy from them! I used to joke that "I am getting my cocaine infusion"! So - I am not saying everybody should go get infusions, but in a case like yours, when you keep having syncope or pre-syncope despite med changes, they may stop the instability and just keep you safe by preventing you from fainting. 

I hope this is helpful. 

Yes this has been very helpful. I did find a infusion center that is a bout an hour away cost is 49 dollars for a 1 liter saline or lactated bag. I still need to get my care team buy in to trial this. I know the feeling of GERD'S. When Tania started having me intake more fluid it was a struggle. Since my med changes the gerd's has subsided as well as the IBS symptoms.

One step at a time i guess.