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Under Investigation


smiley0480
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Hi everyone.

I hope I have put this post in the right spot, sorry mods if it isn't.

I am 24 and have been diagnosed with IST (innapropriate sinus tachycardia) and have have 2 ablations the latter resulted in a successful sinus node ablation as I am now in and out of a junctional rhythm. I am still tachycardic most of the time which ***** but you do get used to it. But because of the sinus pause/arrest I am now unable to take any medications to control the heart rate etc as this puts me into heart block etc.

I was scheleduled for a third proceudre to competley knock the sinus node off but as I have been slowly developing more symtpoms my Electrophysiologist feels that there is even more autonomic dysfunction than he first thought, and for now has cancelled the 3rd procedure.

I have OI which raises 40 bpms upon standing and I can be standing up and then fall not completly to the floor as I am able to steady myself I get moments where I feel like my whole body has stopped it is a weird feeling (I'm not sure if this is from the sinus pause/arrest though) I also have days where I can't stay out of bed long as I feel so unwell like I NEED to lay down or I'll fall down etc. On bad heart rate days I get headaches in the back of my head and a strange wooshing sound in the back of my neck. I don't know what my BP is doing at this time as I have never measured it.

I am being reffered to a neuro with the hoipe that he can pin point whats going on for me.

I have other funny things that go on but I just can't think of them,lol.

Do these symptoms sound familiar to any of you or am I a nuter??

I look forward to getting to know you all,

Naomi

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Guest tearose

Hi Naomi and welcome. You sure have been through a lot!

I'm not sure what you've got, some things sound familiar some not, but going to the neurologist is a super next step.

Read through the archives here, the information of symptoms,treatments, doctors....there is a wealth of information! Also, there is a handbook on line at another web site, ndrf.org. As you learn more you will probably be able to help your doctor help you!

If the dx is dysautonomia then you are our kind of "nutter"!

best wishes, tearose

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Hi Naomi and welcome.  You sure have been through a lot!

I'm not sure what you've got, some things sound familiar some not, but going to the neurologist is a super next step.

Read through the archives here, the information of symptoms,treatments, doctors....there is a wealth of information!  Also, there is a handbook on line at another web site, ndrf.org.  As you learn more you will probably be able to help your doctor help you!

If the dx is dysautonomia then you are our kind of "nutter"!

best wishes, tearose

Hi tearose,

Thanks for making me feel welcome it is really nice to have somewhere to go and just talk about this sort of stuff. I live in Australia and my EP has said that unfortunately to his knowledge noone specialises in dysautonomia here so they are getting together to try and help me out.

I've had the IST diag for a year now which is considered a dysautonomia just not a very common one but it is a bit scary that they think there may be more going on than they first thought.

Naomi

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Guest tearose

Did you look at the physician list here? Go to potsplace.com There is someone in Australia listed...

AUSTRALIA

Professor Murray Esler

Heart Centre

Alfred Hospital

Commercial Road

Prahran

Melbourne

Victoria 3181

61 3 9276 3263

Autonomic Laboratory

It is a good thing your physician is working with you. It will speed the process.

take care, tearose

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Guest tearose

fyi, another person from Australia joined just today! Maybe you two can share what you learn about good physicians and testing centers? Her member name is Dory.

best regards, tearose

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I have OI which raises 40 bpms upon standing and I can be standing up and then fall not completly to the floor as I am able to steady myself I get moments where I feel like my whole body has stopped it is a weird feeling (I'm not sure if this is from the sinus pause/arrest though) I also have days where I can't stay out of bed long as I feel so unwell like I NEED to lay down or I'll fall down etc. On bad heart rate days I get headaches in the back of my head and a strange wooshing sound in the back of my neck. I don't know what my BP is doing at this time as I have never measured it.

I am being reffered to a neuro with the hoipe that he can pin point whats going on for me.

I used to have similar OI. Your fatigue on some days sounds like it could definitely be your dysautonomia. I used to get that, too. Fun, isn't it?! :( The headaches also sound familiar. I think it's your dysaut.

Seeing a neuro is a great idea! I think he/she will really help you pinpoint your symptoms. Good luck! ;)

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Hi Naomi, I wanted to join the others in welcoming you to the forum. I am sorry you are having so many problems and some of them unable to determine the cause. It does sound like a visit with a neurologist might be a good step for you. Also, if you haven't had a chance to review the information in the handbook I would encourage you to do so. There are some very good ideas on what works and what doesn't.

good luck and I hope you feel better soon.

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welcome Naomi! I'm glad that you found us. You should try taking your BP when you are not feeling well. If it is low then you might want to try taking salt since you can not take any drugs. I am currently on florinef but extra salt and gatorade have helped me greatly.

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Hi and Welcome!

So sorry to hear about your struggles. I have not had ablations, but I have had two EP studies done...the hope was that they could ablate. Neither one resulted in ablation.

I would try to see a dysautonomia expert before considering a complete sinus node ablation. It had been recommended to me years ago, and I never had the guts to do it. As it turns out, research shows now that the procedure does not tend to help people with dysautonomia anyway...often making them much worse.

Others may have more info on this....I believe there may be articles in the archives on the site about this as well.

Good luck in finding someone who can understand and help you through this very difficult problem.

My thoughts and good wishes go out to you!

Kristen

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Hi Naomi! I don't have many helpful suggestions for you that haven't been mentioned by the others already, but wanted to welcome you to the family! This is a great place to find information on everything dysautonomic! Glad to have some more Aussie representation! ;) 'Night!

Angela

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