still struggling

Hi all, I just cannot seem to get it together. I am so worried. I slept from 7pm until 7am this morning, then went back to sleep at 1pm and slept until 5pm

I have had my pm for 2 months now and I have started seeing a counslor which is not helping a whole lot. It feels like the only people who can understand me is you all and I am thankful for ya.

I had a bad spell on Wednesday with feeling dizzy, numb and felt like I was going to pass out. I called my doctor and they told me to call my primary. i

I am very frustrated with my EP doctor. He doesnt seem to really care about anything since he done my surgery. seems like he just wanted the money from the surgiers and now I am on my own. I am sorry, I just feel that way. I called there office yesterday and the nurse said my pacer is working fine and would not make me a appt even though it has not been checked since Feb 26.

I went today to check the pacer at a firestation and my pacer was pacing but my BP was 160/100 probably because my anxiety was getting pretty high, so I took a xanax.

Has anyone slept like this. I am able to work 40 hours a week but come home and eat and go to bed. I am so concerned and I feel like I cannot get my doctors to actually listen to me.

I am paced 100 % of the time after having a ablation.

Please if you have any advise for me let me know. I appreciate you all and the time you take to post. Thank you in advance.

Tina

6 Comments

Anxiety or PM?

by Many Blessings - 2013-03-16 08:03:00

Hi Tina,

I'm so sorry you're having such a difficult time with this. It breaks my heart to hear the pain and fear in your post. I wish I could make that go away for you. Don't give up hope! The more positive you can stay, the better chance you have of getting through this faster. I know it's hart to believe right now, but I honestly think what you're feeling right now is going to get better real soon, okay? Just hang in there a little longer.

I didn't have a lot of anxiety after mine, but I have read from others on this site that it is very common to have anxiety and depression after having a PM. Did you have anxiety prior to your PM/ablation? Or, did it come on after your PM?

I think when you're 100% dependent/100% paced, especially with an AV node ablation, you have to deal with a lot of things other PM patients don't have to deal with. That includes mentally, emotionally as well as physically. Having your PM for only 2 months, isn't really that long. Your body and mind may still be trying to figure out what the heck is going on inside, and it may just take you a little more time to heal physically, emotionally, and mentally. This may just be normal for you.

When I first had my CRT-P with AV Node ablation, I hated it! I wasn't anxious about it, I was flat out pissed that I did it! I felt crappy and had all kinds of weird sensations and feelings that I didn't have prior to procedure/surgery (tingling, numbness, dizzy, out of sorts, disconnected feelings, nightmares, etc.). I hated it SO much, and regreted the AV Node ablation SO badly, I just wanted my device out. I wished I had never had it done, and didn't know what to do about it. I researched ways to reverse the AV Node ablation and how I could get it to grow back. I came up with nothing. LOL!

I was given Percocet to help me sleep right after my surgery which I didn't tolerate well at all. I had a bunch of really crazy side effects with that. As soon as I stopped the Percocet, the symptoms stopped, almost overnight. After that, things got SO much better so much faster. The meds were actually making things worse and causing symptoms I was blaming on my surgery/PM.

I also had some setting issues (incorrect settings) which took a few times to get right. I think it was about 3 months before they got everything right. Could you be having some of the same problems? Do they have your settings right for you? They can't always tell what's right for you. They have to just kind of guess and experiment. You need to let them know how you're feeling (in detail) so they can try and help you and make changes until you feel better. Have they made any setting changes yet?

Please try to stay calm and not worry. You said you have Xanax to take? Were you given this for your anxiety after you PM? Or, did you take that before? If it's a new drug, it may not be the right drug for you. Are there others you can try to see if that might help you?

I don't like that they're telling you to see your primary care physician because "your PM is working fine". It may be working fine, but are the settings correct for you? A primary care doc can't help you there. Could these symptoms be from any medication your were given after your procedure? What medications are you taking now that you weren't taking before.

Can you think of anything else that's different now that could be causing the feelings you're having. Do you have a good support system at home and work? Do you work at a hospital? If so, do you have any other cardiology contacts there that can help you get a second opionion to see if it is your PM and not just general anxiety?

From my personal experience, the more time that goes by and the better you feel physically after healing a little bit more, is going to help you a lot. Things can change for the better pretty fast, so watch for those positive signs to give you strength, okay?

As for the emotional/mental side of things, I think others will have some good advice for you. Just know you are NOT alone, okay? There are a lot of others out there that are having, or have had those same feelings, and I know they're going to comment on your post and help you get through that part of it.

Just in case it is a PM issue, can you go to another cardio doctor to see if they'll schedule you for a PM and settings check? Can you call the PM rep yourself to explain things? It may just be one little thing that's off that might be causing some of your symptoms. Or, again, it could be a new medication, etc. Try and think of anything you can that you're doing different or started taking after your PM. If it is purely anxiety, I wish you well in finding something that will help you there. I know others will have a lot of great advice for you, so hang in there!

I hope and pray you will feel better soon!


thank you

by TinaH - 2013-03-16 08:03:43

Thank you Tammy,

I have had anxiety since I was 19 and I am 45. I have been on xanax for ove 10 years, although we have raised it since the pm, but only by 5mg. I am not allowed to call the rep. I have to go through my doctor who does not talk. I get calls from his nurses who do not help at all.

I regret having the ablation. I was dealing with being tachcardiac alot but I believe that was better than this. I just cannot get past all these scared out of my mind moments. I am gonig to find another EP to look at me. I feel like if my doctor is not interested in hearing me when i call and will not make me a appt then there is a doctor out there somewhere who will listen.

I really appreciate your post. You are always so positive. I am like you, I have researched to see how to redo the ablatioin and like you I found out I can't. Ugh.

Thank you once again for posting.

struggling also

by myrosie - 2013-03-16 10:03:45

Tina you are not alone. I am 3 months post PM and I still have times of depression and crying. Try to stay positive, hang around positive people and when someone asks how you are doing tell them that you are feeling great. I find that the more I say and do positive thing the better I feel. My faith in God has helped me to stay strong. Each day we are one more day stronger. Don't think negative thoughts. I know each one of us on this site can identify with your feelings. Stay strong, stay positive. Keep in touch.

You Are Welcome

by Many Blessings - 2013-03-16 11:03:52

Don't give up Tina. It will get easier and time goes on, I absolutely promise you that!

To be totally honest, I still go back and forth regretting the AV Node ablation too. I'm 52 and was born with multiple heart problems which were fixed or improved with a couple of open heart surgeries, valve replacements, and a few other procedures.

They weren't able to fix the chronic, high rate A-fib with meds or procedures, and after 26+ years of that, it caused a stroke at age 27 (which I recovered fully from), regular TIAs, cardiomyopathy with heart failure, and all of the symptoms that go along with that. Short of a transplant, the CRT-P w/AV Node ablation, and a few other procedures, was the only way to go.

I am thankful that I'm still here and feeling better, but because of some of the issues we now have to deal with, and symptoms that are totally out of our control, there are times where I still question my decision on following through with it. Other days, I am thankful and happy I did it. I know there are others out there in our same situation that feel the same way (not sure they did the right thing all of the time), because I have read their posts, and their private messages to me. Still, I believe we are blessed. I did a mountain hike last weekend, something I was unable to do for the last 2 years because of how bad my condition had gotten. That alone makes it worth it. But, I did have some issues after I got home, so still it is not a perfect fix.

I really hope that others will post their suggestions about your anxiety issues. I wish I could help you there.

Still I encourage others that suffer with anxiety to give you advice and help you through this. I know there are a lot of them out there that will help you and make you feel that you are not alone! They'll post something soon, I'm just sure of it. Also, do a search on "anxiety" up at the top right hand corner of this site to see what you can find.

Best wishes! PS: I'm going to private message you.

thinking of you

by Hope - 2013-03-17 05:03:02

Hi! Much has been posted for you. I just want you to know I care. I do feel that medical care you cannot communicate with is as dangerous as no care. Refusing to see you is unacceptable. It seems your current lack of positive connection to your care is emotionally, mentally and physically unhealthy for you. Please make every effort to remove the stress of your current medical care or make a change. Maybe this thought will be of help to you when you are feeling down. It is of great comfort to me........."Don't worry about tomorrow, for God is already there.". Hopeful Heart

Dear Tina

by jeanlancour - 2013-03-17 12:03:10

Sometimes we sleep because our bodies need it, working 40 hrs a week when we are already stressed does put a strain on our bodies. Some people sleep more with the addition of meds or even changing a dose. Stop beating yourself up, admit that you have changed your life, and it wasn't a quick fix but a life change. Maybe it's time to change your cardio dr. to someone you can talk to. Why can't you talk to your PM rep? You bought and paid for it, they made it, they should stand behind it.
Tammy and Sparrow have a lot of good things to tell you. I've only been here for 7 months and still learning from reading..its been an education. I've only got down the tip of the iceberg so there's a long way to go yet. Hope to hear things are picking up, and if not would like to hear that too. Peace Jean

You know you're wired when...

You are always wired and full of energy.

Member Quotes

Thank you technology! My life is much improved.