Hoping that someone can help me..

i am new here (haven't made my intro post, bare with me i just got my 2 month old to sleep after two hours of screaming ! ) and am having what it seems like a zillion problems.

i am 24 years old and up until a month ago thought i was completely healthy. 6 weeks after i had my daughter i was hospitalized for heart failure and had a combo biotronik ICD put in. both a pacer and a defib. stayed in ICU for a week and thought everything was going to be fine. i was told that i had bradycardia, but also tachycardia too. to add to this, when i have my "episodes" of these, i faint ontop of all of this which is what originally brought me to the ER as my family thought I had a seizure, but it turned out to be my heart. (I am sorry if this seems confusing, I haven't been completely educated on this yet and I am still figuring this all out). Well, everything was going great until last week. I was on the phone (Had it on speaker not on my ear) and fainted. Defib shocked the heck outta me and I snapped right out of it. Since then, It's ALMOST happend SIX more times, but I sort of bring myself out of it if that makes sense? They are episodes though because they saw it today when they checked my device on the monitor. Everyone keeps telling me that they are shocked that I am not on any medications and that there are medications to help my arrhythmia and my heart period. A lot of these episodes also are brought on by anxiety and one was due to a panic attack- which was the big one. I am very confused as of why when I bring up medications to control any of these problems, my doctor just blows me off? I am not sure if it's my age or what, but I feel like I just want to give up and that I am back at square one of feeling like garbage all day. I had my appt today and he almost sent me to be admitted, but let me come home as long as I went and stayed with family that way I had transportation if I needed to go to the hospital. I am just so frustrated because from what I am reading, there are medications to help control this or at least TRY to. I am just so unsure as of what to do. I feel like crap and am so paranoid I am going to have an episode. It's been bad all day, but not enough to make my defib go off. My pace maker is turned up as high as it can go and my dr said I am "pacing more than most". What else can they possibly do to help me if he doesn't want me on medications? Should I see another doctor? I am just feeling so lost and really don't know what to do. I have a 2 month old daughter and I can barely take care of her myself so my husband has been off work for over a month now. I want to call my doctor tomorrow and ask if we can try medication, but I don't even know where to start or how to get him to listen to me. I am so desperate. I am not even sure if this all makes any sense, but it still feels good to get it out to maybe to few people that can understand what it feels like...None of my friends understand and think it's all no big deal, but what they don't understand is that this is life threatening and I am so scared. Even though I act tough and cover it up, I am terrified. I just don't know how to make anyone listen to me that something needs to be done...

6 Comments

New ICD & Problems

by SMITTY - 2013-02-12 11:02:25

Hello Yellowbirds,

Welcome to the PM Club. I can understand why you are filled with anxiety.

Since I have only a PM without the defib there is not much I can offer. I will mention that medicines are not always for everything or everybody. So don't be too critical of you dr. yet. But from what you are tell us I do think there are too many vacant spots in your treatment and it would help your feelings, if nothing else, to see another dr.

I'm on my 2nd PM since 2000, when I got my first one. I have had many problems with mine. I have been a member here for 5 or 6 years and read the good and bad postings from many, many of our members. I still trust my dr. to do the right thing but I have to say the info I have picked up here has certainly helped me understand what was going on. So I will recommend that you be a regular here as there is much information available, a lot of which can reduce our levels of anxiety.

I wish you the best and hope to see you here often, not to solve your problems, but to offer comforting words to other members.

Smitty

Congrats on your new baby!

by Grateful Heart - 2013-02-12 11:02:59

I miss those days.

I'm sorry you are having such a tough time with your ICD. No wonder you have anxiety...who wouldn't?

I have an ICD but I haven't been shocked yet so I can't help you with that. But obviously, something is going on.

I agree with Smitty, it sounds like a 2nd opinion is in order. Maybe some fresh eyes to see what is going on and to ask about medications.

Please go for the 2nd opinion and get it straightened out so you can enjoy your new baby.

Keep us posted,

Grateful Heart

Welcome to the PM Club.

by Selwyn - 2013-02-13 01:02:42

Lovely to have a new baby, we all want you to be fit and well to enjoy parenthood. The whole business sounds very distressing.

What to do? I am unsure as to where you live from your profile.

In the UK, it is a patient's right to ask for a second opinion within the NHS. There is no disgrace with this, especially for important decisions. Who accepts the first quote from workmen?

I would try to have a long chat with someone from the department as to how you feel, and what is going on. No one will blame you given your symptoms. Sometimes there are specialist cardiology nurses dealing with PM patients. If all else fails, discuss with the specialist about a second opinion, and let them organise this- that way you get 2 opinions that add up together - this is far better than jumping ship into the sea and starting again.

We hope to hear from you again, and hear all is well.
Best wishes

ICD PROBS

by Alive and Kicking - 2013-02-13 01:02:57

Hi There Yellowbirds,
I hope this helps I have had several probs with my ICD and leads.
My first ICD was implanted in 2006. I was told a year after this that one of my Medtrinic leads was faulty. Before my consultant at Papworth UK could extract the lead I was Defib. I went straight to hospital were the lead was changed. Now after this my heart rate would go continually high and I felt awful. The Dr said he wanted me on beater blockers which I had been on before and taken off as they made me feel worse. This time he put me on Nabivolol and I have felt much better on these.
It sounds to me you need a second opinion. Sometimes we don't shout enough (I don't mean really do it) but you must keep telling them your not feeling well. Sometimes if we don't push for what we know in ourselves is not right and I think many of us with heart probs do know when that is!! You need your Dr to pay attention as you have a new baby and husband and a whole life time with them. As for depression your whole body has been pulled about and the medication they give you when you have Operations can make you feel unwell. If after sometime and maybe they have got you better with your ICD, then if you still don't feel good go see your Dr.
GO GET THEM YELLOWBIRDS !!!
BE STRONG. Alive and Kicking

ICD/Pacemaker

by teaseing - 2013-02-13 12:02:55

You are going thru a lot of stress, just having a baby is extremely stressful then a heart condition. I hightly recommend a second opinion. In 2006 an ICD was installed in me then in 2007 I moved to NC and my new cardiologist removed the ICD and implanted a pacemaker. I have not had any problems since then.
So please get a second opinion. BVM

Big hug for you

by ldebaugh - 2013-02-14 10:02:43

Dear Yellowbirds,
Oh, my you really have a lot on you. Here's what I would do. Check with your insurance and find out the rules for a second opinion or getting another doctor referral. Also ask older friends/parents to ask for who has a cardiologist they like. See another one. It will give you more confidence and I think there are meds that could be tried.

I'm awful with meds and have tried many and the side effects have been life threatening, so I wouldn't know which ones to recommend. I take supplements however. One that is great for me is Standardized Hawthorn (don't know about this related to breast feeding). I take 4 a day (2 in am 2 in pm). It's a real support for my heart and I'm super healthy despite having had a few problems (almost all caused by drug issues). Also take a good quality fish oil. I take two 1000 mg. a day (split doses am/pm). Magnesium calms the heart and I take it for my bones as well as my heart. Also I take an anti-inflammatory supplements like Turmeric (500 mg. 2 in am & 2 in pm). Take a good mulitvitamin too. My doctors know of all my supplements in detail, so none of these are too far out.

Use chamomile tea to calm your self, even take several cups a day. And talk to a counselor about managing your difficulties. One of my doctors said we are all like Tevia, the Fiddler on the Roof, but some of us are standing a little closer to the edge and there's no shame in getting support when things are tough. You are right, your friends and family have no idea what you are going through. So consider talking with a counselor, even if all you do is sit there and cry or complain, it's worth it. You deserve lots of big hugs to help you through this. And, you will get through this.

Look at your diet and eliminate any junk food or things that are not whole foods. Load up on veggies and fruits, and eat little meat, mostly chicken and turkey. Eat lots of fish. Get sunshine on your skin for a few minutes a day. Drink lots of water, no sodas. No diet things, the chemicals do weird things and no one knows for sure what. Limit alcohol to maybe one drink occasionally. Make sure your diet is high fiber. Citrus is good because it has so much fiber in it.

And for exercise, get out and walk around the block either with baby or by yourself, get moving. It will clear your head, reduce anxiety and make the world feel a little better. When you see neighbors, make a point of saying hello and introducing your precious new baby to them. Walk every day if you can. It really will help.

I know things will get better for you. Ask your husband to help you make these changes. Good luck and let us know what is happening.
Hugs,
M'Liz

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