smiley0480

Hi ontrack1,

I haven't heard that POTS is degenerative, but I also have only got info from my doc I haven't done much reading about it myself.

I haven't had a tilt test done but my EP said to me that from my symptoms I probably have some overlap. I have IST which I have had the sinus node ablated but also have some OI and POTS symptoms.

Do you find anything that does help you?

Smiley

Hi Julie,

First I have to be honest I have no idea of what most of that means, but I just wanted you to know that I am thinking of you, and am sending you lots of hugs.

Take care of yourself

Smiley

Hi everyone,

Just wondering I have started getting this newish symptom where my left hand at the wrist level goes really weak and it feels like it is fake and not part of my body sometimes this feeling is for my whole arm but mostly from the wrist down.

Has anybody heard of this or does it happen to them?

Naomi

Hi Kristen and tearose,

I just want to thank you both for making me feel so welcome.

Kristen in your post you mention that you used to have OI etc did yours go away??

or have you managed to find a way to relieve it etc?

Naomi

Wow I can also relate to the whole forgetting to breathe thing, this is amazing to find people that are going through what I am, that sounds nasty but you know what I mean.

I want to thank you guys for having this forum it means so much to come here and just read and know that you are not alone.

I hope you get some relief from your symptoms Ben.

Take care,

Naomi

Hi Tash,

It's funny cause I was wondering if it was you too,lol.

Nar don't feel bad I believe that we are only trhown things in life that we can handle, did that come out right,lol.

I'm glad that my EP cancelled the 3rd one cause not only would I have probably ended up with a pacer but also have more dysautonomia aswell so for now atleast I don't have to worry about that.

I don't blmae my doc he is wonderful to me he lets me ring him up and speculate and throw my wild theories around. And honestly I didn't have the symptoms I'm getting now then so It's nots really a bad thing just a different challenge for us to solve,lol.

We don't have a definate diag of POTS or whatever I spose thats what the neuro will do,hopefully. I am taking the vit B for the fatigue which is helping but you still have some bad days,lol.

I hope they find out whats causing your troubles and then find some way of giving you relief. It'll nice to catch up again.

Naomi

Just my two cents...

The field of dysautonomia is still so new.  There is much still unknown.  A lot of the early ablations let to many dysautonomics needing pacemakers.  Fortunately , I chose not to have an ablation in my early days...my EP now says it would have led not only to a pacemaker in my case, but probably an implanted defibrillator as well!

The reason the EP didn't know the negative side effects in 1994-1995 was because the extensive studies on small fibre denervation through cardiac MRI and cardiac PET scans studies were not available then.  In fact not until 2000-2001 did PET scans show much of the denervation that can be in the heart!!!  So, the technology is still developing that may eventually help in treating us.  We can hope that we will improve...however, I would move cautiously when it comes to any surgery or invasive procedure that may not be reversible in case it would do permanent damage or make me unfit for the future  real "fix".

good luck on your search, tearose

<{POST_SNAPBACK}>

I'm with you tearose,

I am a clear example of what can happen my EP was absolutely 100% that I only had IST and due to the resting rates of 150 we decided together to try for an ablation as I was med resistant and now after having had 2 procedures done and still no cure of IST but the development of further dysautonomia symptoms I would be very careful of which ever treatment option you decide.

My damge is permanant I am lucky that I don't have a pacer but with the amount of damage that we did this may well be the case for me. I am now unable to have any form of medication treatment for my IST and most probably whatever else we find be it POTS or whatever.

I was inpatient and young (still am but a year on changes you) I went from being active and fit to doing nothing and not working quiting uni and I just wanted it fixed and considering we thought we had our diagnosis correct we went for the invasive option as meds did nothing for me. I can't go back but I feel if these newer symptoms were going to develop anyway then I wished we would have waited a bit longer.

Naomi

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

<{POST_SNAPBACK}>

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

Hi again

I since the ablation has nothing to do with the nervous system, I wouldnt think it would but ya never know. 

<{POST_SNAPBACK}>

Hi,

Ablation for IST and AF are still really in the experimental phases we know that there are autonomic nerves located near the right atrium and particularily with IST as the SAN is the problem (depends on your school of thought I spose) it is speculated that part of the damage from the RF or cyro energy is actually done from damaging these autonomic nerves and thus rendering them unable to deliver the messages or derangement. So in a way it is all sort of connected.

An ablation for IST is only really a band-aid fix as you still will have the dysautonomia it just won't or shouldn't if successful affect the SAN anymore because you have caused either enought damage to it or total anhilation.

Hope this helps a bit,

Naomi

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