Hi, I am new to this and I'm looking for some more information. Anything at all!!
Since April 2011 I've had heart problems after coming out of surgery to check my kidneys and bladder that don't function very well. I was diagnosed after a few months with Inappropriate Sinus Tachycardia and must take medication to stop my heart running at around 200bpm if I am doing anything like grocery shopping.
Last week, the 3rd cardiologist I have seen for other opinions and the 2nd cardiologist diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) and Ectopic Ventricular Beats (EVB). They said I have Dysautonomia where your autonomic nervous system does not work properly and these heart problems are a symptom of Dysautonomia along with the kidney and bladder problems. He also said that in his experience, his patients had an underlying cause of the Dysautonomia. My doctor also said it's possible anything else in the autonomic nervous system could stop working properly.
I can't remember all of the different medication I've been on but it's been different beta blockers, calcium channel blockers and one that targeted the sinus node. I've had a lot of tests, bloods for all sorts and a test for how much adrenalin I was producing. Echo's, stress tests, ecg's, tilt table test, holtor monitor tests etc. I drink a massive amount of water and eat as much salt as I can take. I tried compression stockings but they didn't do much except for lessen the amount of swelling I get in my legs.
I have a little boy who has a neuromuscular disease and an uncertain future. We were wanting to have another child in the future if we could but don't even know if that's possible now.
I have tried so many medications and saw 3 different cardiologists and 2 have said there is nothing else they can do other than partial ablation of the sinus node. They have agreed I'm almost at a stage of not functioning and I can't continue like this.
They have said though that ablation can be dangerous so they only want to ablate the tiniest amount at a time to make sure they don't make me any worse. They think it's my heart rate going too high that sets off the symptoms like fainting etc.
I pass out if I do much of anything, even having a shower makes me close to passing out which isn't safe when I'm home alone with my little boy.
I'm starting to wonder if developing all of this has anything to do with having seretonin syndrome twice. The first time in October 2010 I was having surgery to check out my kidneys and bladder and do a couple of small things. I was also on 225mg of my antidepressant effexor (venlafaxine) at the time. The anaesthetist gave me a shot of pethidine at the end of the surgery and apparently fairly quickly I started showing signs of malignant hypothermia. My temperature went up quickly and they put me in an ice bath and I was having seizures. They gave me all sorts of drugs to stop the seizing, I also started getting a swollen throat and my heart rate was extremely high, so they ventilated me, apparently covered me in icepacks and transported me in an ambulance with all the bells and lights, with the surgeon and anaesthetist sitting alongside me scared stiff. I was transported to a hospital about 20 mins away which had the states largest trauma centre and placed in ICU for a few days. I couldn't move. Every muscle felt dead and ached like all hell. After a week I was walking slowly again but had issues with my right arm tremoring badly. They told me this was all due to seretonin syndrome.
I ended up back in that hospital for another week only 2 days after I left. My arm tremor took about 12 months to settle but even now if I use that arm too much it will shake. It is also very weak and I don't think I will get that strength back.
In April 2011 I had another surgery which resulted in only a mild version of seretonin syndrome but still ended up in ICU for 3 days. I was off effexor but on a couple of different medications at low doses which aren't meant to set off seretonin syndrome, although they think if you have had it once, then you are at risk of having it again. My shaky arm got worse for a while but then settled down again. My heart rate stayed fairly high from that surgery onwards. At rest it sat around 140-150bpm and if I did anything it went to 200bpm very quickly.
For a long time I was told it was just inappropriate sinus tachycardia although i had a positive tilt table test done early on. My heart rate went from 200bpm down to 40bpm and my bloody pressure dropped to 50/30. The first cardio I saw didn't seem to want to try to help. She was horrid. The last 2 I have seeked opinions from are great. One medication I was on, brought my heart rate down to 75bpm and I felt perfectly fine. I didn't have any problems with the POTS symptoms. Unfortunately though it did mix with the anti-depressants I am on and made me suicidal so I had to go off it.
If you got to the end of that you need a medal. I just wanted to hear some stories from anyone who has it, how you manage it, do you have an underlying cause, and have you have any further problems with organs shutting down and not working fully. Any information at all. I hadn't even heard of Dysautonomia until last week...