[risa80]

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...

Thanks..

[HoneyMurcott]

Sorry you have been so unwell.

It's not possible that you have Ehlers Danlos Syndrome? Quite a lot of EDS sufferers develop POTS / dysautonomia.

[risa80]

Thanks for your reply HoneyMurcott.

No I have none of the symptoms of EDS at all.

A lot of things can cause dysautonomia. Some being auto immune diseases, others being degenerative neuro conditions. Some are trauma related.

I don't know whether seretonin syndrome comes under trauma related but it's possible I guess..

I would just like to feel better.

And hope to hell these cardio's know what they are doing with surgery..

[creepersgonnacre...]

oh riss xxx hang in there! There is always an answer .
Just reading about it here http://heartdisease.about.com/od/womenhear...s_treatment.htm

there is a bit that says the ablation isn't always effective and the IST returns.
http://heartdisease.about.com/cs/arrhythmias/a/IST_2.htm

not sure what else to say darl but I am always here if you need me xx

This post has been edited by LoopyLupie: 24/01/2012, 06:42 PM

[risa80]

oh riss xxx hang in there! There is always an answer .
Just reading about it here http://heartdisease.about.com/od/womenhear...s_treatment.htm

there is a bit that says the ablation isn't always effective and the IST returns.
http://heartdisease.about.com/cs/arrhythmias/a/IST_2.htm

not sure what else to say darl but I am always here if you need me xx

Thanks. I picked a good one eh?

Had another cardio appointment on Thursday and he said there's a small risk the surgery could be fatal, and 50/50 whether it would make me better or make me worse. Have tried everything else though and there's no other options left. Can barely move a muscle, have no energy, and a heart rate that runs around 170 if I am out of my seat trying to do something. Just can't live like this

[risa80]

With 4 opinions, and a cardio who said he thought there was nothing more that could be done..

I am lost and devastated and just completely drained.

I can go find another one, for him to say the same thing.

Finding it very hard to pick myself up and try again.

[Cat©]

Oh Risa, that sucks.

Have they checked you for the same as your son? I think its bizarre that they haven't checked you for the same myopathy or related one as your son!

A lot of what you have is commonly seen in quite a few myopathies as well as things like EDS and muscular dystrophy's etc (unsure about yours sons version though). Perhaps time for a few tests? CK, Nerve conduction study and a muscle biopsy if not already done.

I have quite a few things that are caused by/placed under the umbrella of dysautonomia as well as my boys. POTS being one, vertigo, tachycardia, arrhythmia and a few other lovelies.

I'm sorry Im no help. All I can advise is to keep asking, and periodically seeing a new cardio and neuro to see if you come across someone who has heard of a new treatment.

Hoping that it settles or vanishes as can happen with a lot of autonomic issues, some last many many years but some can suddenly disappear, and some come and go.

Sucks that you are battling through this so soon after dealing with your sons issues. I really do think you should chase up the possibility of yours and your sons issues being linked. The issues with the anesthetic would also make sense - many people with things like myopathies, MD's, EDS and similar can have devastating reactions to anesthetics.

[risa80]

Hi Cat,

No Rohan's issues and mine are definitely a long way apart. The main symptom of his myopathy are his muscles are very weak, whereas mine are very tight and rigid. A doctor in the ER the other night couldn't believe how tight they were along the top of my spine and that it didn't cause me pain. Well when the bottom half of your spine is fused and can't move the other muscles are going to make up for it.

So no, that one is DEFINITELY ruled out. I have even double checked with a couple of neuro's on it.

I could say the dysautonomia was set off by the seretonin syndrome as that's when the heart problems started, but my bladder/pelvic floor/kidney problems have been around long before that.

I'm not sure I want to see another neuro. The two I saw couldn't give any reason for the way things were and weren't interested in testing.

Someone mentioned I should look at a general physician who would look at the full picture. Just finding a good one is the issue. I have to look at auto immune stuff too and am tied between an endo and a rheumatologist. A few people in some groups I'm in have done both but at this rate we are going to run out of money paying for all of this!

[cj82]

Hi, I haven't been on here for ages. I have IST, probably POTS but now I have LBBB. Initially only when I was really fast, now all the time. Can't work, couldn't look after my 3 and 4 year olds. My hubby and I have taken off in a caravan ( we are from Adelaide), we hope to get some more answers in Sydney. Does anyone know a good cardiologist in Sydney? I was just about to start a thread asking. We are in NSW at the moment, I've already been in hospital twice.

I have seen two electrophysiologists, neither of which were happy to ablate any part of the sinus node. Are they going to put in a pacemaker or defibrilator? I struggle everyday, no matter what meds they put me on. It's terrible you are going through this but it's nice to know others are in the same boat.
Cheers, Carly.

[toodie]

Hi Risa 80

I have dysautonomia, resulting from sepsis, kidney failure and subsequent transplant. It was quite severe, and I had basically been incapacitated for two years with it. Had been through many doctors, tried many drugs, like you, and became really frustrated with not being able to get help for this. Until I found a cardiologist who specializes in dysautonomia. Her name is Sue Cochrane and she works with Cato Cardiology and at the Alfred. This is no use of course to you unless you live in Melbourne. It is her specialty and she works very hard to try to find a solution. Many doctors have no idea how severe and life limiting this condition can be, but she does.

I have been working with her for a few months now, and improvement is slow, but it is improvement, and she will try different things. There is surgery available, but not sinus node ablation,to tone down activity in the sympathetic nervous system, but renal nerve ablation, which may or may not be appropriate for you.

Im not sure if this will be of help to you, but if you live in Melb it might well be worth getting an appt with her- there is a long wait though, she may be able to help you. She also works at the Baker IDI which is at the forefront of this stuff. Hope it helps, feel free to pm me if you have any specific questions.

Regards, Toodie