Heart Arrhythmia Support

Hello to you all,
My name is Kathi and we live in Surrey, England. My husband Rick had his ICD put in in Feb this year at St Georges in Tooting. Just after Xmas he had his first ever attack and a week later had 4 more cardiac arrests and wasn’t expected to make it. Next attack was beg of May. Yesterday he had 4 shocks altogether, the last while in Resus and is due to go for downloading tomorrow.The difference this time for him is that he didn’t black out and remembers everything and this if deeply affecting him emotionally. I would appreciate hearing from anybody who is supporting a partner with an ICD. We don’t know why this is happening. Although I am not medical I am fast picking up a lot of things and I am also interested in the following areas:- effect of Ajmaline test, Brugada Syndrome, Genetics testing and low magnesium levels.It is difficult for us to travel to our support group so I am pleased I have found this group.
Kathi

Dear Paulette

Thank you so much for your kind words and good wishes and welcome to our group. I trust you will find good support and information here. We are growing steadily and really do have some wonderful people here.

Faith and a positive attitude cannot be underestimated, and I believe that I am exactly where I am supposed to be in this time of my life. My partner David, family and friends have been such a wonderful support in my life and it just never ceases to amaze me how the right people are put in my path! My last VT attack was a long way from home and I was one block away from a major hospital, nothing is by chance methinks )

I don’t fear attacks as I used to now, I know what I have to do and the doctors in my local hospital know me and treat me quickly and with minimal stress, eventhough the entire process can be rather stressful at times. I certainly will be most happy when all of this arrhythmia stuff is sorted out, and I am believing they will find that pesky little extra pathway this time and get rid of it for good!
My problem is I have a terrible intolerance to medication that renders it impossible for me to live a life other than being near bed ridden. The last medication I was on made me hypothyroid within 2 weeks of therapy and my bone marrow was becoming compromised, I wonder if anyone else has had a negative experience with amiodarone hydrochloride?. I am not on any medication at the moment but on therapeutic levels of magnesium these days. When I have attacks the most recent a couple of days ago, the doctors give me a magnesium drip and it settles the arrhythmia down nicely and the doctors don’t wish to use any drug therapy on me so that it will give me a greater chance of ablation success in November.The very first ablation attempt some 2 years ago was obviously unsuccessful and after much deliberation with the doctors that thought that the 4 day loading dosages of amiodarone could have stopped it, so I understand their reasoning.

I am very pro alternative therapies but and I am not anti-drug either as I believe all modalities have their places. I couldn’t understand why the magnesium I was taking wasn’t getting into the cells, so I talked to a couple of naturopath friends and they told me to increase the dosage and use a mixture of magnesium forms with potassium. I thought that 3,500mg was a bit of a big dosage but on reflection it really isn’t considering the magnesium wasn’t getting into the cells and the body will get rid of the magnesium it isn’t using. So what I am doing is trying to maintain the IV magnesium /serum blood levels, so that it will settle the arrhythmia. I must admit today is a better day and I had a nice restful sleep last night, and doing it this way may just keep me out of the ER one week.

Sleep is so important and good quality sleep. I find that if I don’t get good sleep that I have increased arrhythmia and I must admit long gone are the days of late nights! (maybe it is because I am getting old LOL). I have also changed my diet to basically 80% raw foods and drink huge amounts of water. Strangely enough, I do find that if I don’t drink enough I do get an increase in arrhythmia. It is a cheap and easy way of helping keep the funky beats at bay! Apparently many persons are dehydrated, I read a statistic that said 70%. I am not certain of the validity of that statistic but many people I talk to admit to me they don’t drink enough.

Anyways… enough of my incessant ramblings LOL

All the very best

—Heather Anderson.

Dear Heather: After reading the recent posts, I had to write and tell you what a courageous lady you are. One can not help to think of oneself being in your position, and the differences in reaction to the situation. You are one strong lady. My heart goes out to you during this challenging time. Nov.in a long time off, but with help from family, friends, and God I know that the outcome will be worth it.I pray for your continued strength, and faith, until you are cured.
God bless, Paulette

Hi everyone: My name is Paulette. I deal with PAC’s, PVC’s, and SVT’s.and what else I am not sure. Sometimes it feels like there is a circus going on in there. lol I don’t know the specific type of any of these arrhythmias. Since joining this group, I now know I need to find this information out. I am on 25mg Atenonol (can’t take anything higher, because my heart rate goes too low) also Ativan 1 mg–3-4 times a day. I am on other drugs, but these 2 are for my heart dances. Ativan helps a great deal. I had my blood pressure any control for quite a while, but lately it has gone up. Didn’t know why. On this site I found that Lipitor is the culprit. I don’t know what I can do about it. My pressure runs approx. 150/90plus. A month ago the doc double my Lipitor. I am now on 20mg. I have been doing a lot of research and I am really interested in cryoablation. I know that procedure is available in the east of U.S. I live in California. Does anyone know where the procedure is available in the west. I would be willing to wait to do anything until this procedure would be available to me, of course unless things got really bad, and life threatening. I have had arrhythmia since I was in my 30′s, very seldom, no big deal. I over smoked, ate too much fudge, drank too much coffee. I have cut all these things, except smoking. Now, as I have gotten older the dances have drasticly increased and they are interfering with my life, what life. lol Sorry about my rambling. I would appreciate more info on magnesium, cryo, co10. With all my crying, I hope I can be of some help to my fellow members.
God Bless, Paulette

Dear Lisa

Thank you for your kind email . These are very tough times of late and I am trying to hang in there for sure. I have thought about a lot of things of late and I guess I am a little angry if the truth be known. To this day I donot understand why the doctors did not implant a defib when I first had the v–tach attack, it would have been a lot easier on me. For starters I would not have had the horrific drug side ffects over the last 2 and a half years and now the decline in my heart function. Back in the early days I hardly had any heart flutters, in fact none and then the nose dive occured over the years with the amount of poision I put in my body. Now the slightest movement can actually cause arrhythmia that needs to be converted in the ER. The icing on the cake was the amiodarone, stirring up extra arrhythmia’s atrial in origin.

Let this be a lesson to anyone who reads this email. We must become experts in our conditions and know everything about its treatment and prognosis. This would save a lot of heart ache and suffering in doing so. I always say to get other opinions and I mean that. I wish I had, I would not be in the position I am now.

I went from amiodarone initally in hospital after the first attack, then sotolol, then a beta blocker, then a calcium channel blocker (this was in a time span of 2 months, my body was withdrawing from medication and then MORE was placed in there so I got more problems) , then a class IC antiarrhythmic, then a class III Amiodarone again.
Basically this is the last straw for me, and that is why I am hoping beyond anything that this EP study and ablation is going to be successful. The doctor did say that if they cannot stop these arrhythmia’s that I would need a heart transplant and that is one level I do not wish to travel

In Love and Light
Heather

Hang in there Heather,
I know it must be tought. You are an inspiration to me, even all the stuff you go through you share with us to help our lives out. You are such a sweet angel. I hope they are able to move u up even more. Is there anyway they can do this some where else so u can get this done now. It seems that they would be able to just fit u in there. It seems like u are just dealing with to much right now, and they got to know this isn’t good for u. I will keep u in my thought in prayers hon and if u need anything let me know I am hear for u. When I see what u are going through It just makes me want to sob. I feel like our typing fingers find the real hearts to a person. If I can make any phone calls to call around for u and see if there is any way some body can get u in sooner I will. Just let me know. I will help out as much as I can. I feel like you are like apart of my family. When I get on my computer and I get an e-mail from somone who has been going through so much and still cares about e-mailing everyone that says what a kind soul you are. You are so great. You hang in there and if there is anything I can do for u please let me know. Thank you for your e-mails. Keep me in touch please. Take care of your self and maybe with this group we can look around and try to get u in faster. We can all put our heads together. If u need me to do any research or anything let me know. Take care and god bless.

Your friend from the heart,

Lisa Davidson

Heather Anderson wr

Hi All

Was back in the ER tonight night but if one thing was allright, the actually attack wasnt as bad or prolonged. The local ER is getting to know me pretty good these days (infamous I think LOL) and I am treated rather quickly and they immediately hook me up to the IV with all the other wires and such.

It appears that my EP study has been bought forward for a couple of weeks and if there is a cancellation sooner I will get in (the date at the moment is October 31st a LOT better than Novemeber 17th). I am so happy that I am at least having sustained ventricular tachycardia but the bigeminy and other atrial flutters, fibrillation and PVC’s are quite uncomfortable. I guess that is about all I can do at the moment. I am ok tonight at least which is good.

One of the doctors tonight wondered why I didnt have a thallium stress test, and I will look into that one, seems a good option and I think it would be useful to show the EP docs how little it does take to get my heart into a spin. Has anyone else on this list had one of those and was it a good diagnostic tool?

Thank you all for your well wishes….

—Heather

“The only thing I know, is that I know nothing.”

I have been dx’d by my primary w/ mvp and tachycardia. They sent me to a cardiologist for a stress test which i was unable to do due to a knee surgery over the summer. In the past two months i have been having tachycardia and flutters/palpitations. I had a halter monitor on that showed my heart rate goes up to 145. So my primary decided to send me to the cardio for the stress test which obviously didnt fly. They wanted me to do a chemical test but my primary didnt. I don’t know why. He would rather i see a cardiologist and find another way to do it. It may be because of my other health problems. (graves in remission) , itp, hypoparathyroidism, fibromyalgia and anemia oh yeah and ibs my favorite one of all. I went to the er this monday because 2 times my heart rate went up to 160 and chest pain. They did nothing but an ekg. I don’t think they had time for the monitor or the room that they said they were going to do. I am still getting chest tightness/discomfort/heartburn feeling. I also get this pain in my neck near my thyroid gland that is where the carotid artery is. It started roughly when all this started that i need to get motrin to get rid of it or it gets excrusiating. I can feel when its fast don’t even really need a monitor any more. Can guess what it is. If i go up the stairs its usually 145 or 160, if i do normal chores it is 120 walking uphill/fast past 130-145. I find bending down/squatting affects it too. Feels like your hearts doing the cha cha when its like that. I am 27 years old this should not be happening. I guess w/ my health history, why not. I am glad to have found you and hope you can help. My husband is telling me its anxiety but i dont think so cause i am anxious all my life and It doesnt always do this. He is just getting back at me when his palpitations were bad and i still nagged him to not let them get the better of him.

Sarah mom to two beautiful(tempremental) kids alexis 4 and zachary 3, he also has a rare condition called glutaric aciduria type 2. Its a metabolic condition that causes protien to be toxic and he has random cynotic episodes when hes sick. Also he has low muscle tone (hypotonia) and severe speech delays but is cuter then the dickens both of them are.

I have been dx’d by my primary w/ mvp and tachycardia. They sent me to a cardiologist for a stress test which i was unable to do due to a knee surgery over the summer. In the past two months i have been having tachycardia and flutters/palpitations. I had a halter monitor on that showed my heart rate goes up to 145. So my primary decided to send me to the cardio for the stress test which obviously didnt fly. They wanted me to do a chemical test but my primary didnt. I don’t know why. He would rather i see a cardiologist and find another way to do it. It may be because of my other health problems. (graves in remission) , itp, hypoparathyroidism, fibromyalgia and anemia oh yeah and ibs my favorite one of all. I went to the er this monday because 2 times my heart rate went up to 160 and chest pain. They did nothing but an ekg. I don’t think they had time for the monitor or the room that they said they were going to do. I am still getting chest tightness/discomfort/heartburn feeling. I also get this pain in my neck near my thyroid gland that is where the carotid artery is. It started roughly when all this started that i need to get motrin to get rid of it or it gets excrusiating. I can feel when its fast don’t even really need a monitor any more. Can guess what it is. If i go up the stairs its usually 145 or 160, if i do normal chores it is 120 walking uphill/fast past 130-145. I find bending down/squatting affects it too. Feels like your hearts doing the cha cha when its like that. I am 27 years old this should not be happening. I guess w/ my health history, why not. I am glad to have found you and hope you can help. My husband is telling me its anxiety but i dont think so cause i am anxious all my life and It doesnt always do this. He is just getting back at me when his palpitations were bad and i still nagged him to not let them get the better of him.

Sarah mom to two beautiful(tempremental) kids alexis 4 and zachary 3, he also has a rare condition called glutaric aciduria type 2. Its a metabolic condition that causes protien to be toxic and he has random cynotic episodes when hes sick. Also he has low muscle tone (hypotonia) and severe speech delays but is cuter then the dickens both of them are.

Happy new years.

Dear Group

Just wanted to let you all know that my ablation attempt was successful and they found the ventricular tachycardia extra pathway problem pretty quickly and after 5 hours of proceedure ablated the pathway. I am pretty sore in the chest but my heart is now stable and pumping along just fine.

I am hoping and praying that the V-T will never return and as it appears even after a few days post ablation all is well. I was getting VT on a daily basis and other flutters and ending up in the ER 5/7 days a week .

Heather from Aussie.