symptoms always present

[lattegirl]

Hi I have vasovagel syncope, early days of treatment. I lost my job because of symptoms not knowing if they were controlled or not.My GP couldn't advise me at all. I am salt loading plus fluids and compression socks, elevated bed.My question is do you continue to have daily symptoms despite all the above but it is of a more controlled state or do the symptoms mean I haven't got the balance right.Any thoughts on this would be appreciated as I am trying to find work again but terrified in case everything gets worse.

Many thanks

[Elish]

Greetings!

   I have POTS, and unfortunately don't know much about vasovagal syncope. However, I can say that with POTS, the symptoms are like a sniper on a grassy knoll. They always follow you around and you never know when the symptoms are going to hit you. Even with this analogy, the symptoms change minute by minute. One minute you'll be fine, and the next you'll be having waves of nausea.You just have to take one day (minute by minute) as they come. I hope this helps you.

[statesof]

I have POTS as well and feel as though I always have symptoms to a certain degree, or are always working up to symptoms if I am up and about. For me it is almost like having a new sense of 'normal' that is never completely as stable as the old 'normal' I used to know, my body always feels like its trying to get to a state of homeostasis but never actually getting there; I do tend to feel a bit different from day to day, hour to hour, depending on what I am doing.

[lattegirl]

4 hours ago, Elish said:

Greetings!

   I have POTS, and unfortunately don't know much about vasovagal syncope. However, I can say that with POTS, the symptoms are like a sniper on a grassy knoll. They always follow you around and you never know when the symptoms are going to hit you. Even with this analogy, the symptoms change minute by minute. One minute you'll be fine, and the next you'll be having waves of nausea.You just have to take one day (minute by minute) as they come. I hope this helps you.

Thanks Elish,

Good to know I don't have to eliminate all symptoms to be considered as managing! ?

[lattegirl]

43 minutes ago, statesof said:

I have POTS as well and feel as though I always have symptoms to a certain degree, or are always working up to symptoms if I am up and about. For me it is almost like having a new sense of 'normal' that is never completely as stable as the old 'normal' I used to know, my body always feels like its trying to get to a state of homeostasis but never actually getting there; I do tend to feel a bit different from day to day, hour to hour, depending on what I am doing.

Thanks statesof,

Really helpful to know others always have symptoms and I can identify with what you say.Each day is different sometimes better sometimes worse.Still have no idea of my limitations , do you ever suss it ??

?

[dancer65]

I have POTS and vasovagal syncope I always have symptons of varying degree even with meds and lifestyle changes. However I am beginning to get to grips when I can push through and when it is time to stop and rest. If I wake up with low BP 60/ 40 's I know to be careful and I really need to pace myself. I also have a surging feeling through my body before I start to feel very hot that's my warning sign to lie down or I will faint

 

[lattegirl]

Thanks dancer65,

I'm still on a steep learning curve, what you say makes alot of sense I have started backing off and not doing alot if I feel very symptomatic. Do you get a feeling that something terrible is going to happen, and feel anxious?I wake with this and feeling hot and it seems to coincide with falling blood pressure .

Lg

[Tachy Matt]

Hi Lattegirl! I personally don't suffer from vasovagal syncope, but I would guess that the anxious and hot feeling is the result of adrenaline going through your body in order to avoid fainting. Remember, your body is designed to do so many different things, so sending out that adrenaline rush is its way of trying to compensate for the blood pressure decrease. I don't know for sure, but this would be my best guess as to why.

[dancer65]

Latte girl I do get a adrenaline reaction as Matt says, I tend to have the flight response and feel the need to leave the room or building I am in . My emotions are all over the place too I often have tears when having an episode or I can be really panicky my husband is use to this now and helps me to calm down. 

[lattegirl]

14 hours ago, Tachy Matt said:

Hi Lattegirl! I personally don't suffer from vasovagal syncope, but I would guess that the anxious and hot feeling is the result of adrenaline going through your body in order to avoid fainting. Remember, your body is designed to do so many different things, so sending out that adrenaline rush is its way of trying to compensate for the blood pressure decrease. I don't know for sure, but this would be my best guess as to why.

Hi Tachy Matt,

That makes sense thanks for the thought.

[lattegirl]

5 hours ago, dancer65 said:

Latte girl I do get a adrenaline reaction as Matt says, I tend to have the flight response and feel the need to leave the room or building I am in . My emotions are all over the place too I often have tears when having an episode or I can be really panicky my husband is use to this now and helps me to calm down. 

Hey dancer65 I can identify with that I too often feel very emotional .I have a hard time convincing myself that I am ok !

much appreciated!

[Sylvie33]

I have such surges each morning... beginning at dawn.  I'm guessing it's tied to high levels of cortisol.  Has anyone been tested and treated for this?  

Thanks--

S

[dancer65]

I had an ACHT test to rule out addisons it came back normal that's when my GP suggested POTS  

[yogini]

For many of us we are worst when we first get sick and slowly find improvement.  Are you taking any medications?  I have mild POTS, and am mostly better now. Getting on meds helped me exercise - and the exercise helped me get better.  DINET has good information on medications and doctors that can help you figure out a treatment plan that works for you.  You may have to try a few different things before you find the right combo. Good luck!

Edited May 19, 2016 by yogini

[Sylvie33]

Dancer...isn't the ACTH test for low cortisol (Addisons?)...I'm wondering about testing for high cortisol (Cushing's).  Just wondering if anyone here was tested and treated for that.

Thanks..

S

 

[yogini]

Even though you feel like you are having an adrenaline reaction, this is very common with dysautonomia.  The surges, fight or flight, ups and downs of symptoms, almost all of us go through this.  Some of us have issues with cortisol - but usually not.  Your doctor can tell you best.

[lattegirl]

17 hours ago, yogini said:

For many of us we are worst when we first get sick and slowly find improvement.  Are you taking any medications?  I have mild POTS, and am mostly better now. Getting on meds helped me exercise - and the exercise helped me get better.  DINET has good information on medications and doctors that can help you figure out a treatment plan that works for you.  You may have to try a few different things before you find the right combo. Good luck!

Thanks yogini, I started florinef but felt terrible so stopped and have been managing non medication things.I am seeing cardiologist Monday after 5 months of trying to suss it myself so hoping for helpful advice!