Pacemakers! To Treat Pots

[jonathanireland]

Ok so I have been doing loads and loads of surfing the net on this issue and have not come across alot of info.

So I think it's about time we clear this up for everyone.

1/ Do pacemaker's have good results in treating POT's ?

2/ Do pacemaker's treat Tachycardia ?

3/ Do pacemaker's have an effect on blood pressure low/high ?

4/ Has there been any studies into pacemaker treatment and POT's ?

5/ Are there any serious side effects on pacemaker use ?

6/ Can you please share your experience of pacemaker use or any information you believe will help this topic ?

Thanks so much everyone this is something that has me so confussed.

[crowebirds]

My husband has a pacemaker for reasons not related to DYS. I can answer some of your questions, but not all.

#2. Pacemakers are for Bradycardia; however, if you are given medicine to lower your heart rate for the occassions it gets too high and you have periods where your heart rate in its resting state is too low, it may be necessary to have a pacemaker that will keep you from going too low.

#5. Pacemakers carry a risk; however, the greatest risk not from the use of one, but the implantation of one.

Go to YouTube and search for Discovery Channel Dysautonomia. The show that they did involves a lady that eventually had a pacemaker to stabilizer her and keep her from passing out. The show is broken down into two or three videos on YouTube, be sure to watch them all.

[Brye]

I've been contemplating a pacemaker for about a year and I think I may give it a try. 3 cardiologists now have recommended it as probably helpful but of course no guarantees. It would not control the tachycardia, my beta blocker does that fairly well for me. It would control the bradycardia from the beta blocker and the dysautonomia. It may give me a little more energy (which I desperately need) and I'm thinking my improve my orthostatic BP's a little. I figure right now my HR is going from the 30's to 40's sitting to 90's when I stand. Maybe if my HR started at 60 when I'm sitting down and goes to 90 maybe I won't be quite as symptomatic. Hope that makes sense. Kind of hard to explain. I'm desperate to feel better and I'm thinking it's worth a try. My diagnosis is POTS as well. Initially my HR was shooting up to the 160's when I stood so the beta blocker and some conditioning has really improved that. It's a really tough decision when there is no guarantee.

Brye

[sj75]

i was offered a pacemaker but for arrhythmias not for pots, as has been said previously pacemakers are only useful in bradycardia (they cant slow down a fast heart beat)you would therefore have to have the bodies natural pacemaker severed. This is irreversible and means that you would have to be reliant on a pacemaker for life. A pacemaker wont remove the symptoms you have due to pots, it only tackles the heart rate and there is an argument that this could cause more problems in pots as the elevated heart rate is a natural reaction to help the body restore balence.

If a young person has a pacemaker, they will need surgery for lead and battery changes. The battery change isnt too much of an issue but i was advised that lead surgery can end up being open heart surgery if the leads have embedded themselves in the tissues.

It really isnt an easy option and the last i heard there was no proof of its effectiveness for treating pots.x

[jonathanireland]

Thanks guys for all your opinions and information on this.

I dont understand how a pacemaker doesnt treat tachycardia.

if the heart is beating fast one would think an electrical pulse from a Pacer would set the heart right again?? No???

Ijust need to go through all my treatment options for 2 weeks time when I see the specialist Iv waited Like 4 years t to see her. So im trying to go through every possible treatment option with her. one of those include Octreotide

[sj75]

the problem with pots is that the tachycardia is just a symptom of other things going in within the body,you need to look at the root cause.

All pacemakers do is fire off an electrical stimulus to trigger a heart beat, if your heart is already beating fast there is no need for it to fire off more. I wonder if you are thinking of an icd device?? but they also wouldnt be any use in pots either unless the tachycardia was combined with some sort of arrhythmia?

Are you currently under a cardiologist?x

[jonathanireland]

I am under a cerdio but I have to pay outta my own pocket to see him other wise id be waiting months doing it public.

Ya I guess your right. Thanks for the info. x

[Heiferly]

As mentioned above, I think you may be confusing a pacemaker with an internal defibrillator. You may want to read this:

http://www.defibinfo.com/internal-defibrillators-what-you-need-to-know

An internal defibrillator can't be used for sinus tachycardia like what occurs in POTS. It administers a shock (like a regular defibrillator ... you know on TV when a person goes into a potentially fatal heart rhythm and the docs shout "CLEAR!!" and apply the paddles and shock a person?) so you really wouldn't WANT something like that to be shocking you every time you stand up and your heart rate gets fast!! At any rate, it's designed for a different purpose than sinus tachycardia.

Pacemakers, on the other hand, can stimulate a too-slow heartbeat to quicken by "pacing" the heart into a faster rhythm, but they can't slow down a fast heart rate. In order for a pacemaker to be helpful in POTS, the patient would either have to have an ablation to destroy the heart's internal "pacemaker" (which research has shown to be likely harmful and actually INCREASE symptoms in POTS patients, contrary to what one might expect) or the heart rate would have to be slowed chemically (i.e. by medications) such that the pacemaker could then mechanically speed it back up to the desired rate.

All this being said, it is important to realize that the tachycardia (despite being the namesake of POTS) is not the root cause of all the other signs/symptoms in the syndrome. It is simply the most prominent sign that doctors observe. The tachycardia is the body's compensation mechanism for the underlying failure of the circulatory system to respond properly to gravity in upright positions. For example, for those who do not have syncope with their POTS, this compensatory mechanism is at least doing that much; if you take it away, syncope may very well be added to the list of woes. This is why you find that many dysautonomia specialists are more concerned with raising blood volume (e.g., fludrocortisone, salt/fluid-loading, IV saline therapy, epogen) , promoting vasoconstriction (e.g., midodrine), reducing pooling of blood in dependent limbs and splanchnic bed (e.g., graduated compression stockings, abdominal compression), and increasing skeletal muscle return of venous blood to the heart (e.g., cardiac rehab, PT, countermaneuvers). These four things are targeted closer to the root of the problem, and if you succeed there you can see less compensatory tachycardia.

[Brye]

I've researched pacemakers quite a bit and haven't found anything about severing a hearts natural pacemaker. If I get a pacemaker I just want to be sure I'm not missing something. I was under the impression you could even deactivate them and let your normal rhythm come back if you didn't need the assistance of one anymore.

Thanks for sharing if you have any info on this. I'm just double/triple checking!!

Brye

[sj75]

if you suffer with bradycardia then there is no reason to rid of the bodies natural pacemaker,pacemakers do a great job at speeding up the heart but cant slow it down as it cant stop the heart beating too fast. For me it would have been used because i have tachyarrhythmias that they cant control so the procedure for that is called an ablate and pace and yes they do irreversibly sever between the ?SA and the Av node- scary. Its what put me off trying that route. x

[Brye]

Thanks for clarifying! I was backing out if there was any severing involved!! Fortunately my tachy rhythms have improved greatly with the Beta Blockers. Now I'm trying to get a happy balance. Hope it all works out for you and they can find a way to control yours!!

Brye