Questions

[Bluebonnet08]

Just curious..

How old were you when you got POTS?  I was 22 years old, never had symptoms before that.  

What do you think triggered it?  A severe case of food poisoning and a reaction to birth control pills, symptoms came on within days of these events

What (if anything) has helped manage the symptoms?  The only thing that has helped has been lactated ringers (IVs) and getting my ferritin(iron stores) up.  These two measures have helped with the frequency of attacks, but I am still quite disabled from my POTS and have severe fatigue as well.

 

[StayAtHomeMom]

I was diagnosed at 30 after i went for a short run and was never able to breathe right. My symptoms are minor compared to some. I take midodrine and metoprolol to manage which has been working along with avoiding triggers and lots of rest. I think i have had it since i was a teenager and my 15 yo son is showing symptoms. I have not found an underlying cause yet so not sure what caused it. I hope you find some combination to help you. I think it depends on the person. Good Luck!

[MomtoGiuliana]

I was 34.  But I had symptoms in years prior and told it was anxiety.  Pregnancy and post partum were when my symptoms were worse.  Until last month when I had a relapse every bit of severe.

IV fluids help greatly along with salt, fluids, beta blocker, compression.  Hoping getting B12 and iron up will help this time. 

[Pistol]

I was 42 and a high-functioning individual, always active. I started to just feel like passing out all of the time one September, not being able to concentrate and being irritated all of the time. By November I had palpitations and chest pains, in ER, holter, passed out the first time while on monitor at work: HR 150, BP 160/90. It went on from there until 2 years later I was diagnosed. As far as I can tell there was no trigger-event that I can think of. My daughter was 4, so it would not have been childbirth. No infections I can think of. But I have been passing out since childhood, as well as B12 - iron deficiency since childhood. Also severe GI issues all of my life. -- My saving grace is also LR infusions and also take B12/Vit D/ iron supplemets due to deficiencies.  

[Tenacity]

I was 21 at the time my symptoms started, 9 months ago in August. There was no trigger as far as I can tell. I just came home from work one evening, rested on my bed, and suddenly felt my heart rate accelerate to 120BPM, where it stayed for the next 6 hours, along with symptoms of anxiety and impending doom. The next morning my heart rate was 90BPM, and the symptoms abated for about a week, until they repeated themselves again. I would suffer from dissociative symptoms, anxiety and bodily pain for the next four months. It was only in February that I realised I had orthostatic tachycardia. Since January my symptoms have been decreasing in frequency and intensity, albeit slowly.  I was found to be vitamin D deficient in March, but that has since been corrected.

[WinterSown]

I developed symptoms at 57 and was diagnosed at 59.   We have chosen not to seek cause because I've had a lifetime of them, instead my doctors treat the symptoms. I exercise everyday, walk about 90 minutes most days, and go to PT twice a week; the combined activity has given me better perfusion and stamina. I do not take supplements (doctor's orders) and get all my nutrients from the food I eat and drink. You might want to look at DINET's Women's Age of Onset Dysautonomia Survey from last summer, the results are an eye opener.