Tired, Frustrated, Confused and Maybe Done

[Abe]

Is this just anxiety or am I really losing my mind?  I get the torture of the countless numbers of symptoms that come with POTS.  I get the extremely high blood pressures.  I am used to it.  I get the digestive issues.  I get the fatigue that feels like life is leaving my body.  I understand the constant bodily pain.  I haven't had a break in the last 5 or more years.  The one I can't and won't accept is the thought of losing my mind.  I was sitting in front of another doctor today (thanks to my Primary Care doctor who advised me to seek the help of a naturopathic doctor) and even though all I was saying makes sense, my brain felt so scrambled.  My vision was so bad, it felt like I was seeing triple.  It just felt like I died and left my body.  It seemed like I am in another plain.  The one thing I enjoy, programming, has become so difficult to do.  I just sit there and look at my laptop for hours without lifting a hand.  I have accepted that this might be my life but not even a day's break?  I am trying to get off of Lorazepam but it's the only thing that works for me and that maybe pushing it.  I can't use beta blocker (Metoprolol) anymore because I get very sick every time I take it.  What do you all do when you've reached your limit?  Thanks.

[Sarah Tee]

@Abe, I’m so sorry to hear you are experiencing all of this.

I don’t have POTS, but I have recently found out that I do have low blood flow to the brain similar to POTS, and on the couple of occasions that this has been reversed, it was amazing to feel “normal” again.

With low blood flow to the brain meaning a lack of oxygen (and presumably glucose), it’s no wonder we feel strange or odd or like we are losing our minds.

When I’ve reached my limit, I have a good cry, blame the universe, feel low, and wonder how it can be that diagnosis and treatment for autonomic conditions can be so slow and so hard to get.

Then after a couple of hours or a couple of days, I seem to regroup and start looking at the “What works?” page here, or reading posts. Often I find something new to pursue thanks to all the knowledge and helpful people here.

[Pistol]

@Abe Whenever I hit my Low I wallow in misery for a while and then I pick myself up and think about all the good things that are in my life. Essentially I count my blessings, literally. Sometimes it is simply the realization that there are birds singing outside and I am able to enjoy them. Thinking positive is a great medicine!

[Abe]

9 hours ago, Sarah Tee said:

@Abe, I’m so sorry to hear you are experiencing all of this.

I don’t have POTS, but I have recently found out that I do have low blood flow to the brain similar to POTS, and on the couple of occasions that this has been reversed, it was amazing to feel “normal” again.

With low blood flow to the brain meaning a lack of oxygen (and presumably glucose), it’s no wonder we feel strange or odd or like we are losing our minds.

When I’ve reached my limit, I have a good cry, blame the universe, feel low, and wonder how it can be that diagnosis and treatment for autonomic conditions can be so slow and so hard to get.

Then after a couple of hours or a couple of days, I seem to regroup and start looking at the “What works?” page here, or reading posts. Often I find something new to pursue thanks to all the knowledge and helpful people here.

Thank you.

[Abe]

5 hours ago, Pistol said:

@Abe Whenever I hit my Low I wallow in misery for a while and then I pick myself up and think about all the good things that are in my life. Essentially I count my blessings, literally. Sometimes it is simply the realization that there are birds singing outside and I am able to enjoy them. Thinking positive is a great medicine!

Thanks so much @Pistol.  It's been a long time.

[MomtoGiuliana]

Have you been able to try IV fluids?  That helps me at least stabilize a bit when I am in a bad flare up.

I also avoid triggers.  A big one for me is warm showers in the morning.  I can feel absolutely horrible after one.  I only shower at night when I am better hydrated and whatever else it is that makes me feel better in the evenings than in the mornings.  I avoid sugar, and increase protein and smaller more frequent meals.  A large breakfast or anything sugary or carb heavy can trigger worse symptoms for me.  I try to sit upright most of the day (may not be possible all day--but when I can at all tolerate it).  Too much lying down seems to cascade to worsening symptoms for me.  Even tho I at first feel better lying down.

I agree about finding something small you enjoy or that even distracts you for some short time at least.  I need quiet (TV etc is too much when my symptoms are bad).  But I agree that hearing nature can be soothing.  There are apps such as the Calm App that contain nature sounds or other gentle sounds or music if going outdoors is not possible.  Fresh air though I find is helpful (as long as it is not severely hot out).

I know, the symptoms can be overwhelming.  

[Sea otter]

@Abe I totaly understand what you mean. I also have a lot of symptoms changing day by day for almost 5 years. Sometimes I think I will lose my mind because I feel so awful. All this physical symptoms are affecting my emotions. I was diagnosed last year so I am still learning how to survive every day, but it is not easy at all. Like we have a lot of diseases in one which we can control at all. Plus all the other problems that come with chronic illness... I don't think you are losing your mind. This is all part of POTS. What do I do when I reach my limits - usually rest or sleep. As I said I am still learning... 

[Abe]

On 7/28/2023 at 12:10 PM, MomtoGiuliana said:

Have you been able to try IV fluids?  That helps me at least stabilize a bit when I am in a bad flare up.

I also avoid triggers.  A big one for me is warm showers in the morning.  I can feel absolutely horrible after one.  I only shower at night when I am better hydrated and whatever else it is that makes me feel better in the evenings than in the mornings.  I avoid sugar, and increase protein and smaller more frequent meals.  A large breakfast or anything sugary or carb heavy can trigger worse symptoms for me.  I try to sit upright most of the day (may not be possible all day--but when I can at all tolerate it).  Too much lying down seems to cascade to worsening symptoms for me.  Even tho I at first feel better lying down.

I agree about finding something small you enjoy or that even distracts you for some short time at least.  I need quiet (TV etc is too much when my symptoms are bad).  But I agree that hearing nature can be soothing.  There are apps such as the Calm App that contain nature sounds or other gentle sounds or music if going outdoors is not possible.  Fresh air though I find is helpful (as long as it is not severely hot out).

I know, the symptoms can be overwhelming.  

Thank you so much @MomtoGiuliana

[Abe]

On 7/29/2023 at 6:39 AM, Sea otter said:

@Abe I totaly understand what you mean. I also have a lot of symptoms changing day by day for almost 5 years. Sometimes I think I will lose my mind because I feel so awful. All this physical symptoms are affecting my emotions. I was diagnosed last year so I am still learning how to survive every day, but it is not easy at all. Like we have a lot of diseases in one which we can control at all. Plus all the other problems that come with chronic illness... I don't think you are losing your mind. This is all part of POTS. What do I do when I reach my limits - usually rest or sleep. As I said I am still learning... 

Thank you so much @Sea otter