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Support group for LQTS?
I have joined the forum recently in hope that I would be able to find a support group to help me. i have been diagnosed with LQTS when i was in my teens, and have had an ICD implantation done. I'm now in my 30s and this is my third ICD. it used to maybe only shock one once a year for an one off episode. Recently i have been getting more of these episodes where I would wake up in the morning with a quivering heart, crazy roaring noises in my head and feeling like I was going to pass out. Fortunately my ICD intervened and saved my life on these occasions. However I am now feeling very depressed and very terrified of sleeping or doing anything that I associate the episodes with. I am quite tramautised by the whole experience - I feel really alone and scared. I am wondering, for those of you out there who have gone through similiar experiences as me, how do you manage your fears?
AHAASAKatie, September 9, 2019 8:59am EST
Good morning, I am so glad you are here and we can support you through this time. I can share the information that we have on LQTS. I also look forward to reading what our members have to say as well. Best Katie
JeffB, September 9, 2019 10:26am EST
Hey, I don't have an ICD but I did have to struggle with anxiety and depression after a heart attack. I have a buddy with an ICD as he has valve issues though. I also did a search on things like PTSD and depression related to ICD devices. Seems like there is significant evidence that this can go hand in hand. And no shock there, pardon the pun, you have this thing that is not only going to zap you on its own intelligence but in an effort to save your life. The only thing that saved me from constant depression was talking through it and sharing my thoughts with others. Crying at times and leaning on friends in the process. Given, I don't have something hitting me with voltage, which I think has a physical/mental impact beyond what I have to deal with, but it may help to talk to someone about the possibility of PTSD like treatments. A protocol to walk you back from the ledge so to speak once the thing fires off or you get stuck in a dark spot.
Sorry, this is not exactly what you are looking for but I hope that it helps in some small way.
BrianG, September 9, 2019 3:40pm EST
Hey Charlie you are not alone . I had a cardiac arrest in Dec 2019 and for 2 months really struggled with fear, aniexty and depression. I found this forum really helped. Made me feel way less alone reading others peoples experiences and struggles. Try not to isolate yourself. Be open and honest with your friends and family and try to keep up your normal routine. What your feeling is totally natural. My doctors hooked me up with a cardiac rehab group which really helped. Those groups can guide you to lots of other help too like therapist etc. It’s been 9 months for me and honestly it took a good 3 to 6 months to feel myself again. This site is so helpful and supportive . You can read letters n replies from people with similar conditions and that really helped me when things were the darkest. Keep us updated on how u r doing ! Best of luck !
JamesPL, September 9, 2019 5:54pm EST
It's not uncommon for you to be experiencing these fears. Virtually everyone with a serious heart condition does. When I was told I had multiple clogged ateries and needed open heart bypass surgery, my initial reaction was complete denial. It took a video of the catheterization to convince me I needed to get it done. And of course the biggest concern was what kind of condition my heart is in. But know this, treatments for all heart procedures and diagnosees have become amazingly good! My cardiologist often reminds me of this and has told me the progress we are making today could very well render some surgical procedures obsolete. This knowledge and the consultations I had with my surgeon was probably the single biggest factor in providing comfort to me at the time. I highly recommend that you sit down with your cardiologist and ask many, many questions. If you aren't satisfied or are confused, ask him/her to give you clarity. If need be, don't hesitate to get a second opinion. I strongly believe that your health care professional should provide you with clear answers to your specific questions to help alleviate some of these fears.
I am also in complete agreement with Brian about cardiac rehab. The progress I made during that time was dramatic! The physical therapists are very helpful in guiding you toward strengthening your heart while also monitoring you closely. The fact that you are in a room with many other heart patients provides some comfort that you are not alone!
I wish you well in your continued treatment and recovery!
Charlie80, September 10, 2019 6:35am EST
Thank you all for taking the time to respond to me with your positive thoughts and encouraging words. I feel so terrified and helpless when a cardiac event is taking place, and the aftermath - having to deal with the trauma is equally stressful. My doctors are great in solving my problem, but not so great when it comes to providing the emotional support some patients require. I will take your advices however - i think it helps to just talk to people about it, like what I am doing now on this forum. I've always been positive and upbeat but the recent events (they happened one day after another) really threw me off. Keep posting here and hopefully someone else (besides me) may benefit from this little discussion as well. :-) There must be more folks out there who need to read this.
Charlie80, September 11, 2019 10:24pm EST
Sadly back in the hospital after another VF this morning :(
AHAASAKatie, September 12, 2019 9:05am EST
I am so sorry to hear this! Please know that we are here to support you! Best Katie
BrianG, September 12, 2019 10:13pm EST
Sorry to hear that Charlie but I used to tell my self “well im in the safest place there is “. Trust your cardiac team they will be able to get u right. We r here for u !