pacemaker plus betablockers- could this work?

[persephone]

Have found a cardiologist who MAY be prepared to TRY it- says if it doesn't work, the pacemaker can come out again, leaving no real damage.

Has this been done before? A pacemaker instead of ablation--just a pacemaker and betablockers...tell me it can, pleeeeeeeeeease!

PLEASE someone tell me this may help and is worth doing-I'm at the end of my tether guys!

-one very sad and blue Persephone--i n the underworld half of the year just now!

[corina]

Hi Persephone,

as far as I know (and please correct me if I'm wrong) you aren't on any medication yet, are you? If that is the case, wouldn't you prefer to start on bb's first? My heartrate went up from 70 (sitting) to 180-200 standing, but using the bb's my heartrate stays at 60 all of the (day)time. During the night my hr often is around 40 because of the bb's. I don't dy from it so I'm okay with that.

Is there a specific reason to try the pacemaker or could you be just on bb's?

I'm writing this because I'm afraid that the aeneasthesia might harm you. It did harm me and I wouldn't want that to happen to you. When there's no specific reason for a pacemaker I would try the betablockers first.

Good luck on making a decision Persephone,

Corina

[persephone]

I've tried midodrine + bbs since February. The midodrine sent my pulse down into the 30s and the bbs on their own sent my bp/pulse a bit too low- but persumably the pacemaker would counteract that?

Midodrine seems a bit hit and miss. Only works sometimes.

The cardio sugesting the pacemaker tried these drugs first back in Feb/March, and said today that if thosedrugs hadn't worked, then the next most logical thing to try would be a pacemaker.

I am just praying it will work.

[goldicedance]

A pacemaker, as far as I know, cannect correct sinus tachycardia. It can correct bradycardia - slow heart rate.

Have you tried: Florinef? Mestinon? Clonidine? Extra caffeine?

I would exhaust all conservative means before jumping into a pacemaker. As you seem relatively young, you would go through many pacemakers (hopefully).

Also, from what I understand, it is very difficult to remove pacemaker leads once they have been implanted. It is pretty easy to remove the generator. Moreover, according to both my cardiologist and pulmonologist, you should try to avoid having "wires" implanted in your chest unless you really need to.

Good luck in making an informed decision.

[steph37822]

oops

[MightyMouse]

I don't understand why the doctor thinks an invasive procedure is the best next step when there are many meds you haven't tried. While they CAN take it out, the leads often leave scar tissue, so if you REALLY need pacing at a later point, it just complicates matters. Keep in mind that for those with POTS, the increased heart rate is FUNCTIONAL...that is, it's your body's way of keeping you conscious when your bp drops.

Better first lines of treatment are blood volume expansion combined with compression garments. Volume expansion can include increased salt intake, florinef, procrit (aka epogen), increased fluid intake, liccorice root extract, etc.

I don't recall you having mentioned doing a combination of these things that are considered first line. Nina

[persephone]

I've tried extra salt and fluid, Prof Mathias told me about that in January.

I've tried Midodrine + bbs. Then bbs alone. then midodrine alone. Midodrine seemed to cause a reaction that made my pulse uber slow (so my cardio said).

He reckoned in theory a pacemaker might work, if combined with bbs. My pulse comes up slow at times too...when I was admitted last friday it was 24 in the ambulance, and I've also been down in the 30s and 40s.

I just feel like I owuld try ANYTHING before I head to OXford...because I don't want this to affect my career adversely.

No one I know here is prepared to prescribe me any of the drugs mentioned. My GP won't prescribe anything, my local cardiologist won't prescribe anything. The cardiologist in Dundee is consulting an ep in Glasgow who has 6 POTS patients who he says may be able to shed some light on it.

He says htat if the worst comes to the worst, and the pm is no good, providing I'm still near him, I can have it removed a short while after.

I'm just so desperate. I know what's wrong with me--I just don't know why no one will TREAT it

Thanks for feedback so far, guys.

[Laura]

Hey Perse, I think I can see the direction that they're going in... You have very high HR and very low HR and in order to get both under control, it may be that the best option for you would be a pacemaker to keep you from going to low, then they can give a good ammount of betablockers to control the high rates and hopefully keep you somewhere in the middle. If most of your fainting spells are caused by a heartrate drop, the pacer will help control that which might be something that would push them more in that direction. If you are fainting because your BP drops too low, a pacer won't change that. If your heartrate is dropping to 24 at times, it could be that they were already considering a pacer regardless as that is NOT a safe number. That may need to be controlled anyway. We are all very individualized when it comes to treatment, the best you can do is check out every available option and make sure you are fully aware of every risk/negative that might come with this treatment. I am very glad that your case is to be consulted by an EP who deals with this... perhaps there will be other options to explore before trying this out? Sounds like this fellow is doing his best for you in any case! Laura

[goldicedance]

I was thinking more of your dilemma and the doctor's rationale. With a pacer, you can be paced at say 65 bpm so that if your rate drops below that as seems to be the case then the pacer would jump in. It wouldn't be in the same situation as if you had a sinus node ablation.

However, I would still go to a several doctors to see their views. Let me tell you, putting in a pacer is a big deal...and Nina is absolutely right about scar tissue. The cardiologist further told me that the leads can sometimes cause blot clots to form. Moreover, having leads replaced is quite difficult. Finally, the placement of the leads is not that easy. When I first had mine installed, one of the leads moved so I had to have further surgery to move the lead.

A gigantic consideration is the fact that with a pacemaker you will never be able to have an MRI. Nowadays the newest in imaging is MRI. I had to have a CAT scan of my pituitary and the technicians and the doctors had to read the manual to see the best way to position me because they so infrequently do CAT scans for such procedures.

These are just considerations. Ultimately it is your decision and how confident you are with your doctor. More than one opinion is always a good idea and your cardiologist should encourage you to do just that!

Enough of my rant!

[yogini]

Pers,

I just wanted to add my words of support for you in this time. I don't know much about pacers, other than that they are a serious step. I would encourage you not to rely on a single doctor and make sure to do lots of research before making a decision. Does the doctor who proposed this have a lot of experience treating POTS? I've had doctors that dabbled in POTS and have come to learn how important it is to have someone with lots of experience. If he's just guessing that a pacer may work, I would not take that gamble without exhausting all of the other alternatives. In addition to the meds you mentioned, there are a ton of treatments listed on potsplace.com.

I know you feel desperate and want to go to school, but don't make any hasty decisions that you could later regret. You have to think about what is best for your health in the long run. I can tell you that things were terrible for me for an entire year, regardless of what I did, but eventually they started to get better. They can improve for you too.

Hang in there and keep searching for the right treatment.

[Guest Julia59]

Persephone,

I think I would try the other non-invasive methods first. I know how frustrated you must be, so i'm sure your patience is wearing thin. Maybe just hang on a little longer to see if you stabilize, or if trying other medications might help. I see you have been through a lot of meds, but I still think the Docs need to be more focused on less invasive measures.

A pacemaker is pretty invasive, and it doesn't work out for a lot of folks who have dysautonomia.

I hope you can get your symptoms in more control without a pacemaker.

I wish those Docs would cooperate more. It does sound like your HR got pretty low, so maybe they feel you have no other choice.

Take Care-----take things slow and careful.

Julie :0)

[Ernie]

Hi,

I would check all the medication option before having a pacemaker implanted.

Ernie

[AJVDK]

I am not sure on this one in Jan. o4 I had an ablation and then in July 04 I had a pacemaker put in. Due to the amout of ablading my heart rate when too slow when I was sitting for too long, or when I was sleeping. The one thing I found out Is that my herat rate still takes off from time to time and I still feel like passing out, and somtimes still pass out. The one good thing about a pacemake is they are somtimes more app to try meds as your pacemaker will stop you heart from slowing down to much. They one thing I will say is I thought my pacemaker would change my life and make me feel better, unfortently I was not that luck, but I have heard of poeple it has worked for! Good Luck with everything you will have to let us know what happen!

Amy

[MightyMouse]

Pers, I wish I could tell you that there are easier answers. Honestly, I've never heard of anyone doing better with POTS and a pacemaker--that's not to say it hasn't happened... but most who get the pacemaker are after an ablation, or even more than one ablation. As others have pointed it, it's not as easy as "we just take it out" if you don't do better. Often, they don't actually take out the leads at all--the take out the pacing device and leave the leads. Over time, they can break down. A dear friend of mine nearly died having the her leads removed as they'd broken into bits and were interfering with her current pacing effectiveness; and she happens to have some of the best autonomic and cardiac specialists in the world.

Please consider being forceful with demanding your doctors try some medication options before doing anything that has surgical risk. If you're not getting a response from your physician, think about bringing a good friend, maybe someone who can be a bit imposing and advocate on your behalf...and perhaps male. I'd like to think that it's an equal world, but let us be realistic.

There are so many options you've not yet tried that are so much less dangerous.

Also, you haven't mentioned using compression stockings. If you haven't tried the pantyhose type, it's worth it. Heck if you're my size, I'll send you a pair I have that are still in wraps!! I'm just hoping you'll get the care you need rather than be offered the pacing option just because it's what the doctor is willing to do in the absence of up-to-date scientific information. I'm serious about the hose offer. PM me if you like. Nina

[corina]

Persephone,

If you want to, I can ask my neuro if he wants to see you. As you might remember I live in the Netherlands, which is not too far from you. My neuro helped me a lot with the meds. He had a list of meds to try, as did I (from POTSplace of course ), and together we decided which one to try. He is not too far from Amsterdam (well to be honest NO PLACE is too far from Amsterdam), about a drive of 30 minutes. For follow up he does phonecalls (we decided on that as it 's easier for me to stay at home). If you want to give it a try, you just let me know and I'll jump in the phone and make a call for you! Believe me, I know how desperate you are and I'm very very sorry for you that you don't have good people around you to help you out!

Oh and btw I've had 3 tilts, two of them showed bp lowering too little (it did lower, but not "enough") at the third it lowered more than "enough" while this last test I actually felt better than during the tests before. My neuro told me that he learned an important lesson: that people CAN have POTS without the bp lowering for 30 (or more) points.

Of course you have to make your own decision Persephone, if you want to go for the pacemaker you do it, it's just that I'm afraid that it wont'be the solution that you're hoping for!

Love,

Corina

[persephone]

Ok Nina, that's scary! I tried stockings in the hospital in April too but they didn't work either.

Thanks for getting back to me though!

[MightyMouse]

Which part is scary? That I'll give you a pair of my stockings or that the leads don't come out

Just kidding, I figured it out instantly, but I'm up at an odd hour and thought I'd be silly with you.

[goldicedance]

Persephone,

If I were in your shoes (or compression stockings), I would put together a list of all medications that POTS people are taking for POTS (not for allergies, etc.) I would take that list to your doctor and work together to see which meds might work for you and in what combination. As noted many times here, the meds singly might not work but may work when combined. Dosages certainly vary. From my experience, I have always started off on a low dose and worked my way up.

Another suggestion is to go to the Handbook that David Goldstein NIH prepared that provides a section on different treatment options.

Finally, have you had an echocardiogram to see if there are any structural problems that could account for a low heart rate--particularly if you have never had low heart rates. As an aside, my 18-year old neighbor whent for a physical before going to college--his heart rate was 34--went to emergency room--diagnosed with pleural effusion caused by malnutrition triggered by anorexia. There are a number of reasons why heart rates can be low--particularly if this is a new situation for you.

I also would be wary of getting a pacer at a young age given the restrictions you will have in the event that you have a medical problem and they can't use the best diagnostic equipment because you have a pacer.

The road ahead is frequently bumpy and certainly finding meds that work is tricky and frustrating. I can empathize with you about the frustration and the difficulty in dealing with dysautonomia. Maybe dysautonomia would be easier to deal with if I could pronounce it correctly (ha, ha).

Feel better,

Lois

PS Nina--leads breaking off is really bad. I've also been told that leaving leads in and putting additional ones in can contribute more to blood clots. My father-in-law had a lead dislodge and caused a blockage in a vein--was in hospital for 3 weeks--had to get a stent put in a vein to open it up--required FDA approval. Anyway, while pacers are great, they can cause problems.

[persephone]

You guys are all AWESOME! You make me feel so much brighter when I get isolated with this- it really helps knowing you're going through this with me.

Nine- you are awesome, laydee!

And Lois- thanks for the advice. I know what you mean about drugs. I just can't understand why no one will give me any. I sent my cardiologist th elist from potsplace a few weeks ago, and while I was in hospital this week he just said he hadn't the time to look at it right now. Then he said that he would have to double check evreything, because it is, after all, just a list a patient downloaedd and printed off the internet

He also said that chances are he won't even manage to WRITE to me before I start at OXford, let alone see me!

I think the nice Cardiologist in Dundee is consulting the ep in Glasgow with 6 other POTS patients about the theory that a pm plus betablockers might lessen the wide range of my pulse- i.e- instead of it dipping between 24 and 200+, perhaps it could be more like 60-140 or something?

I'd just like to say thanks again to everyone for their honesty and their feedback. I think it's something I'm really going to have to talk about with the cardiologist.

It makes me so mad that once I go to Oxford, I will probably have to be moitored by the Scottish Dr as he is the only one who is prepared to DO stuff--he's 500 miles away from Oxford! And in another country! Yet the people on my own door step just can't find the time to help.

Just goes to show- the difference between England and Scotland is ALWAYS evident. (Not that I'm at all biased, being a devout Scot myself!)

[persephone]

Thanks for all the advice folks. Just a little note to update-

I got a letter from th eCardio saying yesterday that actually, a pm would be a bad move.

At least he tried to find out about it. and acknowledged that my care thus far has been pretty feeble.

I can't get any treatment from anyone else--nothing new. Just carrying on with my midodrine and betablockers. Thing is though, in the UK midodrine is taken under a consultant only, not a GP as it's unlicensed. I don't seem to actually HAVE a consultant who would be prepared to prescribe it for me when this lot runs out. (long story)

So I don't know WHAT to do.

What is it the Queen songs says....?

ANOTHER ONE BITES THE DUST!

[Poohbear]

Sorry I wasn't around to chime in earlier.

I do have a pacemaker (implanted after meds failed and my body rejected florinef); I am one of the few that has actually had SOME benefit to pacemaker but this is only because my case in the beginning clearly documented that a significant number of my syncope spells were a result of my heart rate crashing.

I still have horrible tachycardia though and pm does nothing for that.

One thing I could suggest to you that is helping me (but admittedly it was difficult finding a Dr to even come up with this)....I was unable to tolerate typical adult doses of beta blocker. When I was in the hospital they decided to try me on Metroprolol. I started out taking 1cc (which was 1 mg per ml) every 4 hours. Metroprolol is a short acting bb so I don't have as much bradycardia with it. I am now taking 2 cc's every 6-8 hours. This is a TINY dose. It's a liquid form that has to be made by a compounding pharmacy (it's costing about $35 a bottle). This is like a dose they would give an infant if they needed. It is actually helping me some without giving me all the side effects or dropping my heart rate too low.

I will be happy to give you more detailed info on the exact dosage if you and your Dr are interested in trying it.