Feeling scared.

[Scout]

I'm feeling scared, and frustrated.

Just had another severe episode. It was triggered when I stood up too fast. My heart "set off", and pounded and raced so fast, and I had bad pains on my left side.  It hurt my chest so much. Then I had the shivering. It was a fairly short episode - perhaps lasting 15 minutes in total. But it was intense, and I'm just so exhausted, and tired of feeling afraid. 

My family and friends don't understand, and think I'm "just anxious" (anxiety on its own is hard enough to deal with). I'm on a waitlist to see the only autonomic specialist in the area (I can't travel interstate at the moment because I'm so unwell), and I am not sure what I'll do if I can't see them soon. Struggling so much. 

Cardiologist hasn't been able to help. The many doctors I've seen haven't been able to help. I am dismissed because I'm "young". 

I wish the people who patronise me could feel, just for a second, how scary an episode is, and then dare try and tell me I'm faking. 

Anyway - apologies for this post. I suppose I'm just looking for reassurance that things will be OK. Every time an episode happens, I feel re-traumatised. 

Coping with this is hard. 

[moosey]

Scout, 

I'm so sorry you're having to fight this battle. Coping is very hard. I'm going to assume you're a teenager because you mentioned how you were "young". Let me tell you something about POTS. A majority of people who acquire POTS during their teen years get better with time. I remember feeling scared and so misunderstood as an undiagnosed teen. Your path is going to be a bit different than the norm, but I'm sure once you see that specialist and begin treatment, things will get better. There's hope. A lot of people with POTS have to go through a similar challenge- having doctors not take them seriously, being told it's anxiety even though it quite obviously is physical. So please, know that you're not alone, that there's hope, and things will get better with time. I was diagnosed with POTS at 16 years old (it took 2 years to get that diagnosis), i was bedbound most of high school, but now that I'm in my early twenties, things are a lot easier. I still get episodes here and there, but compared to how things used to be, life is a lot easier. When you feel down, just remember that this isn't forever. 

[Scout]

@moosey Thanks so much for the reply. 

I'll hold out hope that things do get better. 

Unfortunately, I've been unwell for a long time and still no proper answers or line of treatment. I'm in my early thirties, but they still think I'm "too young for anything serious". 

I have had treatments in the past that worked for a short while (beta blockers, increasing salt and fluids), but that stopped working and now my POTS is presenting itself in new, and frustratingly terrifying ways. 

Anyhow, just wanted to say thank you, and hopefully I get to see the autonomic specialist soon. All other avenues have not worked. 

 

[Pistol]

@Scout - I agree with @moosey, things DO get better. I am sooo familiar with your situation and symptoms! It is quite common actually for the POTS symptoms to change in severity AND also to develop new symptoms over time. In my case I tried many, many meds in the first 5 years of POTS and whenever one worked I thought I was cured. And then, a few months or so later, it all started back up. I even asked my PCP once if I was "immune" to BB's because they all stopped working after a while. Without proper meds - and the right one's are individual for everyone - it is difficult to develop any kind of balance or even regularity of symptoms. When we do not respond to usual treatments that is called refractory POTS and that is when we have to just keep trying different meds until we hit the jack-pot. I have been controlled on my meds now for about three years but still need to tweak here and there. But it IS possible to become somewhat stable - trust me! I would be hopeful that the specialist will be helpful. If he sees dysautonomic patients then he should be familiar with the frustrating process of medication for them. --- One piece of advice - please DO NOT DRIVE when you are this unwell. I had to stop driving years ago due to my symptoms. I find it difficult enough to BE in a car as a passenger, let alone driving! Our reaction time is delayed when we have high or low BP or tachycardia, so it is dangerous to drive. PLEASE - be well, be hopeful and take care of yourself!

[Scout]

@Pistol

Thank you so much for the kind words and advice! It really means a lot. I have to keep optimistic, even if things get scary, and am hopeful things will still improve. 

Hopefully I get that appointment soon with the specialist, and things start moving ahead. 

And very true about the driving. I have been thinking lately about how I just can't do it anymore, as I have had a fair few attacks whilst driving and have had to pull over. It's too dangerous! The last thing I want is to accidentally harm someone else whilst being behind the wheel, and having an episode. Henceforth, I need to get used to taking Uber rides instead.

Again - thanks so much. 

[StayAtHomeMom]

I hope things get better for you. I have had very few attacks in the last few months and I am unbelievably grateful. I know it won't last forever but it is nice right now. 

I know things are bad now but you will get better. Just try to keep calm and positive. Sending good vibes your way.