Low EF: Getting an S-ICD. Any tips, experience to share?

Posted by bevh @bevh, May 12, 2020

Dr says I can’t take any drugs to improve on this because of my low blood pressure. Now, because of my low ejection fraction (35%) dr says I need an implantable defibrillator. Anyone know of any other way to increase this?

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@lioness

@janwortj74That is a possibility I had heatstroke a long time ago. A few years later I had shortness of breath and a heart problem Best of luck I would see a Cardiologist

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Thanks, Lioness!

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@janwright74

I have exercise induced (it appears) low blood pressure. After a walk with my dog, it tends to be quite low, the lowest being 63/43 with pulse 85. I react to pharmaceuticals and chemicals in general, so I've been adding a good salt to my drinking water, staying well hydrated, and am taking supplements that are supposed to help with cardiovascular stuff: B-12, magnesium, potassium, Vitamins D3 and K2, and electrolytes. From a heatstroke I suffered three years ago, I am extremely sensitive to heat, as well as cold (low bp). Otherwise, I'm a pretty healthy 74 year old female. But I'm scared to go out on a hike or out in the sun for any event for fear of lowering my bp too much and getting light-headed. So far, I haven't passed out. Is there anyone who has experience with this? Help?

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Definetely stop the otc s and make an appointment with a reputable cardiologist. Low bp and feeling faint could mean something serious.

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Thanks, Marv. I see my doctor (internal med) next Tuesday. I'm not sure I trust any cardiologist in Durango, CO and may have to enlist the help of my cardiologist former husband to find a good one in Salt Lake City. What is "otc?"

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@janwright74

Thanks, Marv. I see my doctor (internal med) next Tuesday. I'm not sure I trust any cardiologist in Durango, CO and may have to enlist the help of my cardiologist former husband to find a good one in Salt Lake City. What is "otc?"

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Hello @janwright74

The abbreviation, OTC, usually refers to over-the-counter medication and/or supplements that do not require a prescription.

I've read your posts about low BP as well as heat and cold intolerance. I look forward to an update from you after you see your internist next week.

Will you post again?

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@hopeful33250

Hello @janwright74

The abbreviation, OTC, usually refers to over-the-counter medication and/or supplements that do not require a prescription.

I've read your posts about low BP as well as heat and cold intolerance. I look forward to an update from you after you see your internist next week.

Will you post again?

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Thanks, Teresa, for the clarification. Since I have a paradoxical reaction to pharmaceuticals, it puts me in a tough situation. I WILL try what my doc suggests after having done everything I can naturally. I really thought I could make a change on my own, but I need help. My doc's nurses have been very helpful. No caffeine and no alcohol seemed to make some difference the last two weeks, but not enough.

An article I found yesterday stated bp is dangerously low at 60/40, and I haven't gotten THAT low, but close, so far only once, at 63/43! It seems better now with more B12 and potassium. Am also taking magnesium, D3 and K2.

My cardiologist former husband said as long as I feel okay that for some people, it's just numbers. But I'd like to get this checked out. I don't feel comfortable going hiking in the mountains anymore.

I did a echo stress test last December, and did really well, so I can't imagine it's gotten so bad in six months that I need another one, but we'll see.

Thanks for your concern. Any suggestions are greatly appreciated!

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@janwright74

Thanks, Teresa, for the clarification. Since I have a paradoxical reaction to pharmaceuticals, it puts me in a tough situation. I WILL try what my doc suggests after having done everything I can naturally. I really thought I could make a change on my own, but I need help. My doc's nurses have been very helpful. No caffeine and no alcohol seemed to make some difference the last two weeks, but not enough.

An article I found yesterday stated bp is dangerously low at 60/40, and I haven't gotten THAT low, but close, so far only once, at 63/43! It seems better now with more B12 and potassium. Am also taking magnesium, D3 and K2.

My cardiologist former husband said as long as I feel okay that for some people, it's just numbers. But I'd like to get this checked out. I don't feel comfortable going hiking in the mountains anymore.

I did a echo stress test last December, and did really well, so I can't imagine it's gotten so bad in six months that I need another one, but we'll see.

Thanks for your concern. Any suggestions are greatly appreciated!

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Update after doctor's appt.
My plummeting blood pressure during/following walking my dog has been as low as 63/43 but currently averaging mid-70's over mid-50's. She says it "could" be because my high cholesterol may cause plaque in arteries, preventing a natural squeezing of them during exercise to allow more blood to the brain, resulting in light-headedness. It returns to low normal with time.

With a paradoxical reaction to pharmaceuticals, I refuse to take Lipitor. (I took it for a year in the past, and it lowered my normally high, good cholesterol and not the HDL, and I had lousy side effects.) I'm back on low-dose asprin and red yeast rice. I lowered it from 401 to 294 in two months with diet change and natural supplements. Being on a keto, no grain diet for two years felt good but sure raised my cholesterol! Has anyone else experienced this?

We're checking for a urinary tract infection, as infections can lower bp. (Did not know that! Seems it would raise it.)

And, I'm scared but am willing to try fludrocortisone to lower bp, but if this will help with "exercise induced low blood pressure" and create other problems for me when I'm NOT walking my golden retriever, I don't know. It would be nice to once more hike in the mountains and deserts of southwest Colorado and not be afraid of passing out!

Any suggestions or experience with this drug would be greatly appreciated.

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@janwright74

Update after doctor's appt.
My plummeting blood pressure during/following walking my dog has been as low as 63/43 but currently averaging mid-70's over mid-50's. She says it "could" be because my high cholesterol may cause plaque in arteries, preventing a natural squeezing of them during exercise to allow more blood to the brain, resulting in light-headedness. It returns to low normal with time.

With a paradoxical reaction to pharmaceuticals, I refuse to take Lipitor. (I took it for a year in the past, and it lowered my normally high, good cholesterol and not the HDL, and I had lousy side effects.) I'm back on low-dose asprin and red yeast rice. I lowered it from 401 to 294 in two months with diet change and natural supplements. Being on a keto, no grain diet for two years felt good but sure raised my cholesterol! Has anyone else experienced this?

We're checking for a urinary tract infection, as infections can lower bp. (Did not know that! Seems it would raise it.)

And, I'm scared but am willing to try fludrocortisone to lower bp, but if this will help with "exercise induced low blood pressure" and create other problems for me when I'm NOT walking my golden retriever, I don't know. It would be nice to once more hike in the mountains and deserts of southwest Colorado and not be afraid of passing out!

Any suggestions or experience with this drug would be greatly appreciated.

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Hello @janwright74

I appreciate your update after the doctor's appointment. It is good to know that there is a medication that might help. I can certainly understand your hesitancy given the previous problems you have had with meds. I did find some information about this medication on Mayo Clinic's website, https://www.mayoclinic.org/drugs-supplements/fludrocortisone-oral-route/proper-use/drg-20063868.

We have some other Connect members who have used this med. I would like to invite them to join this conversation @karina77 @judy5140 @teetee7 @elizabej. I would encourage you to read some of their posts.

Have you seen any other specialists such as an endocrinologist?

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@hopeful33250

Hello @janwright74

I appreciate your update after the doctor's appointment. It is good to know that there is a medication that might help. I can certainly understand your hesitancy given the previous problems you have had with meds. I did find some information about this medication on Mayo Clinic's website, https://www.mayoclinic.org/drugs-supplements/fludrocortisone-oral-route/proper-use/drg-20063868.

We have some other Connect members who have used this med. I would like to invite them to join this conversation @karina77 @judy5140 @teetee7 @elizabej. I would encourage you to read some of their posts.

Have you seen any other specialists such as an endocrinologist?

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I tried, but it wouldn't send my first comment so am trying again. Thanks for the link. After reading it thoroughly. I will contact my doctor to let her know I am only taking half the recommended dose. It already has had an effect, as after walking my dog, my bp is in the 70's and 80's over 60's, which is much better than previously. I do have an iron taste in my mouth, but no one said that was a side effect, and it's tolerable. I will work up to taking a full dose, but the potential side effects, especially as sensitive as I am to drugs, scare me. I will also ask my doc if she feels the need to see an endocrinologist. THANKS!

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Posting a note here since I am scheduled to have a Medtronic ICD installed in a couple of weeks. I will share my experience and hope to hear and learn from others.

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