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POTS

Fast heart and weak limbs but not too worried. Boyfriend worries but I don't worry. Then I collapse. Then I'm fine for a few months. Then I collapse and my heart is going 197bpm and that's bad. Then I'm fine for a few weeks. Then I pass out. One week. Pass out. Few days. Passing out everyday. Passing out multiple times a day, everyday.

POTS. What? Postural Orthostatic Tachycardia Syndrome. What? Dysautonomia. Syncope. I don't know. Neurocardiogenic Syncope. Vasovagal Syncope. It's not dangerous. I don't know.

Seven trips to a'n'e in three months. ECG: normal. Bloods: normal. Blood pressure: normal. They're always too late. Hours of waiting. Go home. Cry because this keeps happening and they don't know why but it's not dangerous, but that's not reassuring.

Lots of young women faint. Who? To what extent? I haven't met them.

Frequency and severity of episodes increases. Worries me what this is building up to. No one can tell me anything. Genuine fear that might die as body seems to be shutting down.

Bruises and injuries and I hurt my coccyx and I pass out on the stairs on Christmas day and that's not good. Worst is loss of independence. That's definitely the worst. Can't go anywhere by myself. Taxis are expensive and I can't work anymore.

Referral gets lost. Takes over two months to see cardiologist despite symptoms progressively getting worse and going to a'n'e over and over again. He says I have syncope. I knew that. Doesn't help. We've done our research but he says I don't have POTS because I don't piss myself (count the blessings) and he's the doctor so we go home. He prescribes Midodrine. This doesn't help. He prescribes Fludrocortisone. This doesn't help.

New doctor. So tell me what's been happening with you. Keep doing what you're doing, nothing more we can do, hopefully you'll get better in time but no way of knowing. (Repeat x 3 and lose hope more each time)

She could have a pacemaker. She shouldn't have a pacemaker but we can do a test. No need for test, she either has it or doesn't. Ok, she doesn't. Lose more hope.

Tilt table test. Strapped to table which is rotated until standing. Pass out. This confirms what we already knew. No change to treatment.

Two 7 day ECGS. Wires attached to my chest. Make a joke with a cashier. He looks at my chest. Thought he was a misogynist until I realised he probably thought I was dying. Awkward.

Passing out everyday. Trying to write essays but only being able to form basic sentences. I used to be intelligent and I've forgotten how because I don't have the energy or concentration.

Finding ECG electrodes everywhere and often still attached to me from last a'n'e visit. Poor posture and pale skin. Mix between an old woman and a junkie. What an attractive look.

Final performance for degree. Cast in main part. Pass out in rehearsal in front of rest of class (nothing new there). This is different. Feel as if I'm being dragged across the room at 90mph and there's a bright light. Feel like I'm dying. Drop out from performance out of fear of passing out in front of audience. Take on directing. Absolutely love it. Learn to communicate better verbally as I am so weak physically. Count the blessings. (Get a First for that module despite passing out everyday and being very, very weak. Thank you positive attitude/only thing keeping me going).

Graduate from University. Spend a forgettable summer not able to do much except move between sofa and bed. Can't perform so write more (count the blessings). Worry I will never have good job because this could go on and on. Eventually receive disability benefits despite the process terrifying me. Keep applying for jobs even though at that point I could not plausibly work.

Referred to neurology. CT scan: fine. EEG: fine. Back to cardiology.

Moving back home. Please can you increase my dosage? No. Please? No. But looks like you do have POTS (I knew it). Referred to Kings Hospital in London.

Apply to be Arts Marketing Trainee at theatre in Canterbury. Perfect job. Bittersweet. What if I get the job but am too ill? I get the job. Start date is pushed back. Nearly two months between interview and start date. Gain strength to point where can do the job. Can't quite believe it. Don't pass out for weeks.

Love the job and the people. Have to explain condition to new manager. Presume will freak him out. He is supportive. I'm fine for first few weeks then pass out while transforming a stair well into outer space. Pass out every now and then. People get used to it. That's nice.

Commuting 40 minutes each day to work. Tired. Excruciating pain in legs. Tachycardia. Chest pains. Nausea. Headaches. Fatigue. But I'm staying upright. Count the blessings.

Overwhelmed by how knowledgeable and supportive Kings Hospital are. Gone from no hope to people saying they will fight to help get this as manageable as possible. I can call nurse anytime. So helpful but so much.

Echo. Exercise test on bike while wearing weird mask to monitor breathing. Pass out. Feel like a mixture between Bridget Jones and Lady Gaga. Wires come off but heart goes from very fast to very weak. They think heart may have been close to stopping. But it's not dangerous. 3D echo. Put on higher dose of medication at last. Feel the benefit. Wish they could have done that months ago in Brighton.

Exercise test with echo before and after. This time on treadmill. Pass out. Inconclusive as can't do echo when heart is fastest as recovering. Frustrating.

Referred to gastroenterologist. No further tests.

Referred to endocrinology. Recommended New Atkins diet for 5 weeks. Less than 20g carbs a day from veg, proteins & good fats. Helped similar patients. Worried but will try anything to be better.

Do lots of planning and preparation. Only last five days. Warned of headaches and feeling lousy but not this. Pass out three times in two days with other episodes of pre-syncope, loss of balance, constant tachycardia and feeling unbelievably weak. I'm all for powering through and cracking on - I have since I've had the condition, but this was too much.

So now what? We'll see. Keep taking seven tablets a day and drinking lots of water and having lots of salt and wearing support shorts and avoiding alcohol and getting enough sleep I guess. And listening to what the doctors have to say, at least now they're really trying. Oh and counting the blessings. Always counting the blessings.



For more information on POTS visit STARS - a great charity with lots of information, advice and support on this and similar conditions.

UPDATE: I'm doing so, so much better these days - largely due to being prescribed Ivabradine in March 2014, alongside the lifestyle changes. Still pass out every once in a while or will get shattered, flu-like symptoms for few days but otherwise, pretty much symptom free!

Click here for other (later and previous) posts about my experiences with POTS.

Comments

  1. Great writing Amy, hopefully this new hospital will continue to help you out.

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