POTS.
Back when I first started writing I wrote a post entitled Tachycardia briefly explaining what had been going on with my health and that we were stuck in a bit of a no-mans-land. Yesterday, nearly a year after my first admission I have a diagnosis!
For those of you with a medical background; postural orthostatic tachycardia syndrome (POTS) with episodes of hypoglycemia. There's some general dysautomonia and they're still pursuing neuro follow up although we're hopeful that I can be discharged and just remain under cardiology. My tilt table showed an increase of 60bpm post-GTN, intolerance of exercise (40bpm increase on standing and hit 150bpm within first minute). 7 day monitor showed persistent tacycardia (hit 190bpm at rest on more than one occasion).
For those of you to whom that makes no sense...it's a name that explains the majority of my symptoms. It accounts for symptoms that I didn't even realise were related to the heart stuff so it's taking a while to get my head around things. Most of all, I'm just relieved that we finally know what's going on. I was beginning to think I was going crazy and imagining it!
Sadly, there is no cure, time may help but otherwise it's a case of symptom management. For now, I continue to see my consultant for monitoring and my arrythmia nurse and GP for support with symptom management. My medication is staying as is but with much more flexibility around dosage. I need to be keeping an eye on my pulse and BM when I'm acutely symptomatic but the rest of the time the aim is to just get on with normal life. My consultant didn't tell me much about the condition that I hadn't already experienced - there are good days and bad days, if I'm not sensible and overdo it, I will know about it for the next few days, I become fatigued easily and struggle with even short flights of stairs.
It's not all bad though...I can freely drink caffeine again and am even being encouraged to do so. As well as being encouraged to include more salt in my diet and keep well hydrated! It's a big fat yes to getting back in the gym as long as I build up very slowly (ie. starting with just 10 minutes cardio). And, wearing tummy-sucking in knickers may help to stop blood pooling in my abdomen and therefore help alleviate some symptoms relating to orthostatic intolerance!
There is so much more to say but I'm still trying to get my head around it. But yay for diagnosis and knowing how we can move forward. I can get ready to return to Uni.!
The amount of exclamations in this post suggest I'm a little bit excited with the progress...
TTFN x
For those of you with a medical background; postural orthostatic tachycardia syndrome (POTS) with episodes of hypoglycemia. There's some general dysautomonia and they're still pursuing neuro follow up although we're hopeful that I can be discharged and just remain under cardiology. My tilt table showed an increase of 60bpm post-GTN, intolerance of exercise (40bpm increase on standing and hit 150bpm within first minute). 7 day monitor showed persistent tacycardia (hit 190bpm at rest on more than one occasion).
For those of you to whom that makes no sense...it's a name that explains the majority of my symptoms. It accounts for symptoms that I didn't even realise were related to the heart stuff so it's taking a while to get my head around things. Most of all, I'm just relieved that we finally know what's going on. I was beginning to think I was going crazy and imagining it!
Sadly, there is no cure, time may help but otherwise it's a case of symptom management. For now, I continue to see my consultant for monitoring and my arrythmia nurse and GP for support with symptom management. My medication is staying as is but with much more flexibility around dosage. I need to be keeping an eye on my pulse and BM when I'm acutely symptomatic but the rest of the time the aim is to just get on with normal life. My consultant didn't tell me much about the condition that I hadn't already experienced - there are good days and bad days, if I'm not sensible and overdo it, I will know about it for the next few days, I become fatigued easily and struggle with even short flights of stairs.
It's not all bad though...I can freely drink caffeine again and am even being encouraged to do so. As well as being encouraged to include more salt in my diet and keep well hydrated! It's a big fat yes to getting back in the gym as long as I build up very slowly (ie. starting with just 10 minutes cardio). And, wearing tummy-sucking in knickers may help to stop blood pooling in my abdomen and therefore help alleviate some symptoms relating to orthostatic intolerance!
There is so much more to say but I'm still trying to get my head around it. But yay for diagnosis and knowing how we can move forward. I can get ready to return to Uni.!
The amount of exclamations in this post suggest I'm a little bit excited with the progress...
TTFN x
So pleased you finally know what's going on and things are clearer.
ReplyDeleteThose knickers sound epic. xx
Hi dear,
ReplyDeleteThanks for following my blog...and I am so sorry to read about your diagnosis of POTS...I wish you much health, and joy. Stay positive...and of course, keep blogging :)