Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
So I'm getting one. I have tried everything else that I have access to and my heart problems have just been getting worse. I went from fast heart rates of 200 to heart rates in the 30's. Then last week my heart stopped and I passed out (which happens hundreds of times for me but usually purely from my BP and not HR).....that incident qualified me.
I actually want to get the pacemaker. I want a device rather than meds to protect my heart because the medications just aren't working well.
Didn't think this would ever happen in my 20's, but I'm glad I at least found a cardiologist that takes young women seriously when it comes to supposed unlikely heart problems.....
poppy
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posted
Best of luck to you. Sorry it has come to this.
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steve1906
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posted
Good luck Summer, I hope it gives you some releif.
It's crazy what lyme does to out hearts.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've heard of some who have received pacemakers to feel SO much better afterward and with better stability for energy (maybe not the next day, though ;-o) -- my guess is that it will help. That's the plan, I'm sure.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
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posted
That's great news summer!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thank goodness. Your doctors have been less than efficient on this. Glad to hear that someone finally "listened!!"
You should be feeling much better very soon!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Unfortunately even my EP doesn't think it's going to help me much. His main worry is that I'm going to be very disappointed/depressed by the results and will still faint and still be dependent on medications (which aren't even successful). The bradycardia was found incidentally........recently. It's new.
I've been fainting for 3 years prior to the brady and pauses purely from blood pressure. So I wish this would help me but unfortunately even the doctors don't think it will.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I used to faint at least 2 - 3 times a day. And that's just at home. If I went out, I'd faint multiple times, anywhere. I started wearing dark colors so that the sidewalk debris would not stain my clothes.
I have not passed out in years, now. Although I do have other complications (and never really was able to address lyme / TBD directly). Still, something has helped to stop fainting. (Still looking to stop seizures, of course, there's always something, eh?)
I don't want to complicate things and thought you'd already been scheduled for surgery with no reservations. Since your latest comment above, though, I wonder if all other variables have been considered.
QT syndrome. First to consider, of course. Genetic testing.
And, I assume you are not taking ANY Rx that can complicate QT rhythm issues. Be sure to cross reference, various ways.
I assume you've been assessed and all your blood relatives assessed, too (or considered even in mulling it over from those who are passed -- vs. passed out (eh, eh!).
Chagas Disease. I don't care where you live, you should be tested for this.
Seizures.
Some kinds of seizure can be confused with fainting &/or cause the fainting first but then the seizure stops so as not to progress to fuller expression. That detail is not in the link below and I don't have the article, I lost it and then could not find it via the web. But I could try again. The author of that article posed his own research, observations. It's not widely known.
I have other thoughts but need to stop.
Oh, but Paul Cheney, MD who did a lot of work with CFS and cardiac issues. I'd want to read all he has written and find out "where he's at" (in his work topics) these days.
MAGNESIUM. Especially the kind with taurine.
POTS / NMH . . .
Inner ear / vestibular / TUMARKIN's phenomenon -- or wait, maybe it's TULIO (they are both related to the ears but are different) one can mimic fainting (that's the big deal with me . . . the vestibular - fainting trigger).
Low Blood Sugar, of course, I'm sure that's been considered.
I'll see what else I can find if you might want anything else. Most of what I list is here:
CARDIAC LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do you avoid ALL fluorescent lights? Even some of the newer energy saving ones can trigger syncope. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
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posted
Are you still taking beta blockers? They are for high blood pressure, so might not be a good thing for those with low blood pressure.
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
No I'm not taking any meds that could cause it. I've been tested for pretty much everything. I don't have reservations on the pacemaker after my heart stopped last week. It will work for that along with my headaches and fatigue during my non-fainting bradycardia. That is something I'd never like to feel again.
However, I faint hundreds of times.......99% of those times it's not that....it's my BP. My EP is aware of this. The pacemaker he's going to implant is the only one that has some capability to sense a change in cardiac output/BP and adjust heart rate for that. SO I have a slight amount of optimism, but am prepared to be disappointed.
He basically told me not to get my hopes up and that I will always need to complement the pacemaker with medications for my BP. The medications like midodrine at huge doses are not risk free. I would prefer to eventually get off of them and just use a device/PM, but that won't be happening apparently.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Within a few weeks. As soon as he's able to get the device and has an opening.
I'm back on doxy but to be honest, it's going to be too late for anything to work in a few weeks to reverse this if it hasn't worked in 3 years. I'm pretty dramatically worsening and the heart/blood pressure issues are scary and serious.
I'm 100% for treating the cause of the issue and in my case the cause is Lyme. However, this is one instance where I need mainstream medical help too.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Summer,
Thanks for the clarification on what you meant about expectations (& that multiple factors have been considered).
Still, here's hoping that this plan will be an excellent help after all is worked out.
I hope you have good friends / family around to divert attention and just provide good moral support. -
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