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..

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.

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..

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

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.

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.

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!

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.

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

I was admitted to St Vincent's in Melbourne, they couldn't wait to get rid of me. Too hard basket. Wishi had gone to the Alfred but i was in an ambulance, so they took me tobthe closest hspital. I was at 200 and in LBBB. Since my last post I've been referred to st Vincent's in Sydney and they might do an ablation and pacemaker. The trouble is I can't get an appointment til July. My life is so completely taken over by this and I keep reading stuff on google that scares the sh*t out of me. I have LBBB and there is a fifty percent mortality rate in the ten years post diagnoss. That means I have seven years if I'm in that fifty percent. I have not told anyone this but I'm so scared I'm going to die and leave my two babies behind. I'm crying writing this. I don't know what to do.

Sorry on phone, terrible spelling!

Hi Carly! Wow your story sounds very similar. What is LBBB? I can barely get in the shower and get my son dressed most days - it's like pushing a brick wall along with you at the same time. Today my heart rate is 175bpm. Last saturday it was 185bpm. I'm exhausted by the weekends. Mostly it sticks around the 130 to 140 mark but if I am moving about it goes anywhere between 150 and 190. It went over 200bpm in my tilt table test.

The two surgeons I saw that are the only ones in WA to deal with the sinus node, won't touch me with a 10 foot pole. They said it is too dangerous to ablate and they'd probably kill me or make me worse. They said a pacemaker wont work unless my heart rate goes too low. So far, it is just always too high.

It is at least nice to know that I am not alone in this, as bad as that sounds.




Hi Toodie

Are you talking about Sue Corcoran? My gp has forwarded all my information on to her. I heard she wasn't taking new patients but we are still going ahead with the hope she will take me on. I'll just have to fly to Melbourne to be seen. With someone tagging along in case I pass out along the way! What is involved in renal nerve ablation? Have you had it? It would be nice to try anything. I've tried a lot of beta blockers, a calcium channel blocker which I'm on a small amount of now, and Coralan which sent me nuts. Horrid drug for me!

Really hoping that she will see me. I feel horrible so much of the time. My bladder and kidneys dont work properly, now I have heart problems, and recently I've just started up with neuropathy in my foot, all due to bloody Dysautonomia! I'm positive the cause of it was when I had seretonin syndrome in October 2010. I had another milder bout of it after surgery in April 2011 and that's when my heart problems started.

Thanks for replying.



Oh no - I'm sorry It's crap when people just ditch you. I was so upset when my cardio and the two surgeons with him ditched me because they were worried about making me worse but have no other options so just ditched me. If you have POTS will they definitely do the ablation though?
I know the fear. And I can't do anything to alleviate your fears because I have the same ones. I've been told by the cardio's now that 1. without controlling the IST, the heart will wear out and I will go into heart failure. Or the second option is ending up with cardiomyopathy from muscles thickening because the heart beats too fast. Which my friend died of just over 2 years ago.

Did you have a good cardio in Adelaide?

Hi guys, well I was back in hospital last night, this time in Bathurst where we were spending Easter. LBBB is left bundle branch block. It has some pretty serious implications similar to those of uncontrolled tachycardia which you mentioned.scary stuff. I have a decent cardiologist in Adelaide but when thy can't fix you and you keep getting worse I feel as though they start to fob you off. Just keep an eye on things rather than try to fix you. It's good to see new docs, I'm having two 24 hour urine saves to rule out pituitary tumours that could cause the symptoms but I'm pretty sure it's not that. I also have really high diastolic blood pressure, it's all a bit of an on going mess! So over it all. Nice to be able to chat to others who understand.
Cheers, Carly

Oh and I'm on Coriolanus, which I find pretty helpful. What side effects did you have?

Hi Risa,



yes, its Sue Corcoran who I see. I was told she was not taking new patients, but, if you get your doctor to write a detailed letter with all your issues, she will read it, and then decide whether she will take you on. My GP wrote a letter and I was phoned by her practice manager who said she would see me. If she thinks you are sick enough, which sounds as if you are, she will see you, hopefully. She is a lovely lady, however she says its a long road, which it is. I am still trying new meds with limited success. Renal nerve ablation invovles an angiogram. As my native kidneys dont work at all, they are sending out misguided signals via the sympathetic nervous system which causes all my symptoms. Your case may be different, but if your renal function is off (by a long way) it may be worth looking into as a cause. I hope this helps you- good luck with it all


Toodie

How are you both going cj82 and toodie?

Sue Cocoran knocked me back as she said I was too much of a risk. That I could decline any time and she wouldn't be able to help as I'm in a different state. I kind of understand. Still disappointed.

She referred me on to someone local who was supposedly very good, and I just received a letter from him and he said he also could not help.

Running out of options and hope.

Just had some auto immune tests done last week to see if that is the cause of all of this.

Of course, there is still nobody to try to control my heart rate. Mental.

Hope you both are having more luck.

Hi, that sucks! It's like banging your head against a brick wall isn't it? I got some results back from a 24 hour urine save which were abnormal. They have referred me to an endocrinologist, but are not convinced its causing the problem. I also got weighed at the doctors and am 40 k'gs over my ideal weight. The weight I was before kids. I was so shocked. I bawled my eyes out. She was lovely but told me not to put on any more weight. Ok, but it's really hard when you can't exercise and love food! In the meantime just waiting for the electrophysiology appointment. Ive been back in hospital once. Just gave me Iv metoprolol and some magnesium and potassium, which always seem low. I'm on supplements but it's still low. Who knows what's going on inside my body. Plus I have an ingrown toenail which is killing me! Oh it feels good to whinge. I don't like whinging to my poor DH all the time....

Hi Risa,



Sorry to hear Sue Corcoran couldnt help you. Ive been unwell here so sorry for replying late- we all have a cold here! I dont know of anyone in NSW who could help you, its a real dilema. Maybe google blood pressure specialists or ask a cardiologist who might know of anyone. I am sorry you cant get the help you need, I know how frustrating it is it took me two years to get onto Sue. Really I wish you luck in finding someone, the only thing that controls my heart rate is beta blockers, but they have caused huge weight gain- but Im sure you have tried them with no luck! I wish you well in your search for help, sorry I couldnt help you more with your search for a dr!

Hi guys, just thought I'd let you knw I had a modified sinus node ablation at Westmead on Friday. It'll take three months to know exactly how it went but so far so good. My heart rate at rest us now 80, Down from 150. I'm still on high doses of eta blockers and other rate regulators but hey are actually working now. Agh, typing on iPad. How are you going?

I was just coming back to see how you both were and cj82! Wow!! How are you feeling now? Will you be able to cut back the beta blockers slowly? I really hope it works for you!

Nothing happening here. Still don't have a cardio, and I now have a trick which involves getting extremely breathless just while talking or eating and blacking out. No idea what that is about.

You need to be taken seriously risa, that is horrible to be blacking out. They tried to tell me I was hyperventilating at one stage, but then saw my ECG....

I don't feel much different. I can have another ablation but sort of wondering what the point is. I think the beta blockers are working better, but other than that no real change.

Next time you black out can you present to a big public hospital? They have a duty if care to investigate. A fresh set of eyes can often help.

Good luck! I'm having another holster monitor next week so I'll find out how fast I'm going in a daily basis then.

How are you going cj?

My aunt just had ablation for atrial fibrillation and it went badly. Blood pressure totally messed up - thinking she has POTS and she hasn't ever had all the tests.

The bloody public hospitals around here are useless. Actually every doctor I have met is useless in regards to my conditions as they don't know enough about them. I have to explain it all so many times.

Blacked out while sitting the other day ironing - almost took out a very hot iron and ironing board with it.

Saw another cardio a couple of weeks ago and she can't help either. That would be the 7th.

The psych said to me today, please don't give up.

But, I'm ready to. Seriously when I have to teach them whats going on, they really know less than I thought!

Oh and the blacking out while eating/talking is very concerning and something I have to keep an eye on. hah.

Hey Guys, just checking how you are going? Are you still getting the blackouts Risa?

I flew to Sydney last week to see my electrophysiologist and hes come up with a rather interesting plan which invoves open heart surgery. Crikey Moses, I still have not really processed it. As soon as I start thinking about it I get panicky.

I have a Left Bundle Branch Block which is getting worse, so they want to do it relatively soon, he just needs to get a team together, as this actual operation has only been done once before that he knows of. Hes not going to remove the sinus node, but cut off the blood supply to the whole area, so the pathways cant grow back.

Its effectively giving m a massive heart attack under controlled conditions, then putting in a pacemaker.

Anyway, just needed to let someone who understands what we go through with these weird conditions know! Ill keep you posted!

Hi Guys,

Here's a thread I never wanted to belong in. Bugger! Yes I've been absent from here and in a world of bother with heart problems.....I'm freaking over it and I'm nowhere near as far down the track as you girls.

The cardiologist I'm under is Tom Gavahanm, just love him. His books are absolutely closed but I have a chum that's a surgeon and he's seen me with all this trouble kicking off and as Tom is a good mate of his got in to see him at 8.30am within 2 days of second 'cardiac episode'. Have since had another 3 that have required being raced to hospital including quite a spectacular epic fail on my stress echo, the poor diagnostic cardio's face was a picture, she shat herself! LOL My heartbeat at peak was 168 and then I semi-fainted thinking I was going to face plant the treadmill so thank God jumped off in time....she screamed at me to lie down immeditely and her gorgeous nurse just shoved me on the bed...within 7 seconds my heart was beating at 55. She's at a loss. Linford Christie I ain't but she couldn't believe monster drop in <10 sec. Still haven't sighted the report but on the back of that boy have I been fastracked to see all my ologists. LOL

She seems to think that I'm having "conduction" problems but she feels my rheamatologist has got to jump right in the frame here and weigh in with her thoughts. Fortunately my rheumy (Professor March from RNS) is back in the country on Thursday and seeing me Friday. Result. Endocrinologist he wanted her feedback from as my Hashimoto's & Menopause/HRT & Type 2 diabetes she looks and any other autoimmune stuff so I'm seeing her this Wednesday. Clearly it pays to fail at stress echo's because all of a sudden you get service. Respiratory physician been pulled in as cardiologist flapping that perhaps my pulminory sarcoidosis has perhaps become cardiac sarcoidosis. Joy. I see him tomoz. So yeah I'm still so new to this and already freaking over it. My issues are mainly being a chronic autoimmune disease chick and my cardio believes that as the severity of my rheumatoid arthririts is so bad (commenced biologics and bloods not even shifting, $hit!) that it's given up attacking my joints etc and now just starting on my organs. Woot. Other one I need is my haematoloist and cardio shot off urgent referral to her today so hopefully will get to see her ASAP. I had dodgy findings on my bone marrow back in 2009 and pretty crappy feedback from PET scan. I sat on my hands as busy with my youngest and look where it's got me. Hmmmmmm.

So that's where I'm at. Nice to be able to read what you guys are saying and keep abreast of what you're talking about. I see my cardio again next Monday as by then I would have seen the endo, rheumy, respiratory & hopefully haem by then....should be a cheap week really. ZOMG this crap is exxy! Anyhoo I'm realllllllly pinning my hopes on my rheumy being able to rustle something up. I know when I see cardio I'm in for a CT angio & tilt test & holter & ????? (3 other things I've forgotten the names of) so all of that sounds like a blast. Other than that I'm just so seriiously over feeling so absolutely crap all the time. In knots thinking about school holidays starting next weel, UGH!


Enough whingeing but I'll wait to hear from you girls again, I seriously hope you've both had some good news since you both last posted.


Dan xxxxxx

Hi guys,

Just doing a quick check in to see how your going?

Nothing much has changed here other than repeated doctors telling me they cannot help but I cant continue to have a high heart rate without it eventually killing me. Helpful hey.

Had a bit of an incident driving last week too. lack of oxygen or something from blood being pumped too fast.

Now trying to get tested for malignant hyperthermia too.

Hope you are both ok x

Oh and was going to double check if you guys are managing to do any low impact exercise? I tried yoga last week and got my heart rate to 175bpm lol and thought that was meant to be low impact!

Ah Dan was just rereading over your reply and wondered if they had any more ideas on the monster drop in beats? My tilt table test saw my heart at 205bpm and drop to 40bpm and scare the crap out of everyone. Blood pressure went with it to 50/30.

Generally though my heart doesnt drop too low. At rest it is usually 120-130 and any activity will see it to 200.

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