NEWBIE.. Ctr-D pacemaker advice please

[catchee]

Hi everyone,

i had a CRt-d pacemaker fitted 4 months ago and iv never felt worse! I am dizzy often and have a huge lack of energy, 5 weeks ago my defib fired due to a programming error, no problems there after.

I have a feeling the reason i feel so bad is drug related, i am on Intresto (never sat well since started taking it) Eplerenone, Dapaglaflozen and Bisoporol. I cannot eat gluten, dairy (lactose intolerance) since implantation and alcohol now gives me AF, which it never did before!

Does anyone have any similar symptoms to these? Its getting a bit much for me now as i don't seem to have much of a life since the pacemaker and its becoming worrying.

Cheers, Stuart...

[sherwood123]

Can I ask what was the reason you had it fitted ? , mine was fitted 9 weeks ago. Low EF and heart disease also ectopic problems I am taking 3 .75 bisoprol in the morning, 5mg ramipril in the evening, will be going onto Entresto shortly.some days I feel ok, some not so good, don’t know if it’s meds , my device or my condition. But I am putting up with it until I am on max meds and the device and bypass have had chance to work. It will take time, but what meds suit one person may not be suitable for the next. I also get sickly feelings, light headed and tiredness . If you are suffering really bad symptoms then I would speak to your heart failure nurse, mines brill., or your cardiologist. Regards Stephen

[catchee in reply to sherwood123]

Hi Stephen,

i was implanted to resolve Dilated Cardio Myopathy, one good point of having the pacemaker is my heart is returning to its normal shape so the DCM might go away in the end. therfor might not have to take the drugs forever..

[sherwood123 in reply to catchee]

Hopefully for you that will be the case, I have never took any meds in my life previous to this incident, but may have to get use to them. I would watch your alcohol intake until your body adjusts to the meds, good luck

[catchee in reply to sherwood123]

Hi stephen,

has your heart failure nurse been able to sort anything regarding your symptoms?

[sherwood123 in reply to catchee]

She has increased my ramipril from 3.75 up to 5mg, just been taking for a week, bloods on Tuesday, then changing to Entresto , this more expensive drug helps with heart function. So really I am at the early stage to give a full evaluation, all I can say before I was ill last October , I wasn’t having these feelings, but willing to try anything provided it doesn’t knock me to the floor. I do have a heart problem which is not going to go away, so I will listen and try these meds.one more point I have never had high blood pressure, but these meds lowers it, my wife checks it regularly and sometimes but not always when I get these feelings it is down to 110-114 which for me is too low. Regards

[catchee in reply to sherwood123]

Hi stephen, Thanks for the info. I have pretty low blood pressure already before i developed dcm, around 100-110. i get my worst days when my bp drops to 85/90 . which started when i was initially on ramipril. cheers, Stuart

[sherwood123 in reply to catchee]

That would ring the alarm bells with a lot of medics, I personally would be on my hands n knees, obviously you have it checked regularly and they are happy with it ? Regards

[Bigbrian]

Hi Stuart, I had a CRTD fitted in January this year, I was at the top of my meds before I got it, 10mgs of bisoprol and 100 mugs of entresto, I was told by my cardiologist professor I had to be at top of meds before I was given crtd. I had severe heart failure in April 2019 but after 1 year on meds and now pacemaker it’s virtually gone. I see you are on dapagliflozin, is this for heart or for diabetes?

[catchee in reply to Bigbrian]

Hi Brian, thanks for the reply.

Did you have a hard time getting a tolerance to the Ramipril then the Entresto? It took me months to get used to the ramipril due to the pressure drop, the entresto i have been on 5mg for 6 months and it still buckles me really badly..

The Dapaglaflozen encourages the body to produce the specific enzyme that your heart repairs its self with, its a side effect of the drug, used in combination with the other drugs i'm on it encourages DCM sufferers to repair the heart, which it has done by about 50%

[Bigbrian in reply to catchee]

Hi, ramapril gave me a cough which I think most people get, but the move to entresto was ok and no side affects. I didn’t think dapagliflozin was available yet for heart problems, I will see my heart nurse to see if I can get on it too. My pacemaker has been optimised twice, and each time I felt absolutely amazing, but then it sort of tailed off Over a week to being ok, definetly feel more blood going to my head and much clearer but my body sometimes gets fatigued, but defo much better than before the meds and pacemaker fitting.

[catchee in reply to Bigbrian]

hi,

My cardiologist had to have permission from 2 other departments to get me on dapa. it certainly seems to be doing the trick, altough some of my symptoms seem to stem from it, you pee out all the glucose from your system so low energy is a given. I hopefully shouldnt have to take it forever..

How bad does your fatigue get Brian? im really struggling to get off the couch these days..

[Bigbrian in reply to catchee]

Hi

The fatigue tends to hit me around the top of my body, seems a bit strange to say but it’s as if the blood doesn’t get around fully, when the pacemaker was optimised twice it felt that I had energy and I had no upper body fatigue. But definetly much better than it was previous to meds/pacemaker, cardiologist and physiologist both said it should take about 6-12 months to get full benefit so I’m hopeful it might get back to the optimised feeling I had previously, but really happy with what I have. My original diagnosis was left bundle branch block which didn’t let my heart bottom chambers beat at the same time, I think I had it for 40 years if not more.... so I’ve went from severe heart failure to very mild if any according to my last echo cardio gram . How do you handle your fatigue?

[Prada47 in reply to Bigbrian]

Hello Brian

I have been on Entresto for around a year now started on 24/26 mg and then moved to 49/51mg I also have 7.5mg Bisoprolol which seems to get changed up and down, just gone back down to 7.5mg from 10mg again !!

Just had a poor week with BP up to 160/90 with a low of 83/58 HR high of 70 low of 49 so even on Entresto & Bisoprolol, Blood Pressure and Heart Rate can be up and down, your CRT probably doesn't know what to think lol.

My EF has stayed the same on Entresto Low 40s.

I have a telephone appointment on Monday with Cardiologist who is also a Professor so will discuss changing Blood Pressure with Him and post next week !

Stay Alert and Stay Well

[Bigbrian in reply to Prada47]

Hi Prada

My blood pressure tends to sit about 100/65 so low but ok. On ejection fraction, cardiologist told me it is +- 8% so he didn’t seem bothered much about a figure, just how you feel. Hoping that Dapagliflozin will be available soon, some people on this site seem to be on it already so they might be starting it off. Another pill to add to my selection.

Take care

[Lezzers in reply to Bigbrian]

Hi, apparently dapaglifloxin won't be licenced for HF for at least another year. Those who are already on it are taking it for diabetes.

[Bigbrian in reply to Lezzers]

Hi, yes that’s what I thought, but one of the guys on here says he’s on it already for heart failure. Maybe on a test with him to see how it goes.

[Lezzers in reply to Bigbrian]

Strange! Its definitely not licenced for HF yet. Maybe the member can confirm if he has diabetes or if on a clinical trial. The only other reason I can think of is, is his medical team are working outside NICE guidelines.

[Bigbrian in reply to Lezzers]

Well he says it’s helping. Maybe more need to work outside the guidelines and get if passed out to people who need it rather than sitting on a shelf waiting on a signature, from what I read it’s definetly a game changer, maybe we should all lobby our MPS who are all on holiday at the moment,

[catchee in reply to Lezzers]

Hi lezzers,

I am taking Dapaglaflozen for HF, My cardiologist told me that it was available to use but was still considered a diabetes only drug at the moment. I am in scotland, not sure if that makes any difference, less hoops to jump perhaps.

As i said earlier in the thread he did tell me that he had to convince the pharmacists and the cardiology boss to get me on it, next time i speak to him i will clarify and put a post on here to let folk know.

Cheers, Stuart

[Prada47 in reply to catchee]

Hi Stuart have you been on Entresto before Dapaglaflozen or did they just put you on it ? A little earlier you put your entresto was 5 mg read it again and maybe it is Ramiprilat 5mg ? What strength Entresto did you get to ?

Stay well Stay Safe

[catchee in reply to Prada47]

Yes i was on Entresto 49/51 x2 daily for 3 weeks before i got the Dapaglaflozen. The Entresto is taking a lot of getting used to, makes me feel awful..

[Prada47 in reply to catchee]

OK that's the Entresto I am on Heart Nurse won't increase it said I was at Maximum tolerable for me !!!

Stay Well Stay Safe

[Lezzers in reply to Prada47]

Hi Frank. Hope you're keeping well. Has there been any talk of you eventually bring prescribed dapaglifloxin? We loosely talked about it with the cardiologist last December but it was all very non committal due to it not being licenced?

[Lezzers in reply to catchee]

That'll be great if you could do that. I don't know how the system works in Scotland but it sounds like you're way ahead of the game there. Certainly in England it won't be licenced till next year but apparently it is giving great results. I read that you're taking Entresto, do you monitor your blood pressure? Entresto can really reduce it which may be why you're having dizzy spells. I don't know much bout dapaglifloxin but I thought it was gonna be prescribed as an alternative to Entresto. Also bisoprolol can drain you of energy, maybe you need your meds tweaked? Do you have a heart nurse you can talk to?

[Prada47 in reply to Lezzers]

Hi Lezzers

I have a consultation with Heart Nurse and Cardiologist on Monday my Blood Pressure and Rate is changing about quite a lot !! my low has been 87/59 with max HR 85. I spoke with a Nurse from the clinic and she said she couldn't understand how it's changing about so much with the Meds I am on !! so back to 7.5mg Bisoprolol with the Entresto. Otherwise life is good walking with next doors dog for 3 miles and then a couple of miles on my own in the evening. Good weather makes it very enjoyable.

Kevin and Yourself Good ?

Stay Well and Take Care

[Lezzers in reply to Prada47]

Hi Frank, will your appt with cardiologist & nurse be a remote consultantation? Please let me know how you get on.

Kevins strange heart beat issue is still with us, we're off to Papworth in a couple of weeks to see what's to be done. And now his potassium is far to high again, so further blood tests for that, aneamia & thyroid! Whilst all his red cells, lymphocyte, etc are all below range again, I'm not sure where the thyroid comes into the equation??

Glad to hear life is good & whilst self isolating isn't the best this beautiful weather does make it more bearable, though of course not everyone has a garden.

You take care & stay safe too.