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Amyque

Pots can’t cope

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I have had pots symptoms now for 3 months, it followed a viral infection and then a cardiologist diagnosed it after a 7 day holter and an echo to rule other things out. 

Iv gone from an athletic happy young mum to a bed ridden, depressed sad soul, I have two children that depend on me (I’m 30) and I’m letting them down with this illness.

my symptoms-

heart rate that jumps to 125 just standing up and continues to rise until I sit down 

if I don’t sit down once it get past 130/140 I get deep heart pain, SEVERE breathlessness and it takes me hours to get my breath back even once sitting. 

I get chest pain all day, light headed all day, sleep apnea now (I’m slim with no other health issues) and I gasp through the night with heart rates nearing 200! 

Also if I try and push myself to stand longer my heart switches from severe tachycardia 160 plus if standing more than 5 mins  to a beat here or there and then when I sit down it’s SEVERE missed skipped slow beats!!! Like it’s going to explode/give out. 

Im so frightened, that it’s making me bed ridden which is causing severe anxiety/depression. And it’s hard to explain this to people as you look fine. 

My cardiologist sent me for a pet ct scan as he said sometime pots is due to more serious causes so I’m just waiting for the results as only had that yesterday .

 

im always breathless which is worse after eating, talking, bathing, heat and ANY movement standing etc. 

My life has done a 360 and I’m in constant fear, please tell me this gets better. 

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@Amyque - the symptoms you describe are familiar to me ( and probably most POTS sufferers that are not properly medicated ). I used to feel exactly like that, plus I would faint and take seizures often from it. I did not improve until I was diagnosed and treated by an autonomic specialist. If you are not currently seeing one i would highly recommend you ask to be referred to one ( see our physician tab for a listing ). Some cardiologists may be able to diagnose POTS based on the HR increases on standing but they do not know how to treat it. Most order a beta blocker and expect you to do fine - but it rarely is that easy. Finding the right treatment is highly individual and different meds work for different people, despite them sharing the same symptoms. 

Your HR ( especially along with your symptoms ) is nothing to laugh about, and you need to be treated for it. It is OK to look for an explanation by doing a PET scan - but treatment should come before finding a cause. Ask your cardiologist to treat your tachycardia, which he should with medications. If not you may need to see another physician. Cardiologists are not necessarily ( actually they rarely are ) able to deal with POTS, that is why you should see a specialist in addition to your cardiologist. Most people diagnosed with dysautonomia have to travel out of state to see their specialist, and almost all have a long waiting list for new patients, so getting a referral soon is important. 

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Waiting for results can be nerve racking. You’ve provided examples of how your cardiologist is taking some forward steps to try to figure things out, that’s a positive. Hang in there and go easy on yourself. 

I’ve had that feeling of letting people down too. After spending half of my life with varying degrees of chronic illness, my family still assures me that I haven’t let them down and that I’m as important to them now as when I was perfectly healthy.

 

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