So Discouraged

I'm not sure this is the right place for this, but I am completely discouraged. I had another episode yesterday, despite my best efforts to increase my magnesium and potassium intake. I've stopped going for walks. I've stopped doing nearly everything.

The medical community is of very little help. I am on Medicaid, so it's not like I can ring up the top-notch EP and see them for a consult. I could not tolerate the beta-blocker, even at the lowest dose, and the cardiologist assigned to my case didn't take my concerns seriously. He discounted the print-outs I brought in that supported mag and K supplementation. I can't afford to be sick like this.

I am despondent at present; afib has ruined my life and taken away so much. I have very limited resources, and can't continue like this much longer. I have very little emotional support; the people around me mean well, but they aren't very familiar with afib. I really don't want to spend the rest of my life on medications, or having procedures done at the hands of Medicaid docs who have compartively little experience in dealing with this.

What can a person in my position do? I am very, very discouraged. I'm on very small doses of Mag. glycinate; I hit bowel tolerance at 150 mg. and same for the potassium. I no longer feel safe in my own skin, and I don't feel safe in my own home. I live alone.

What to do, besides give up completely? For a condition that is so common, docs sure don't know enough about it to help me achieve any kind of quality of life.

I feel so much for you kitty, I am in the same boat as you. I just found this site yesterday. There are many fine folks here. I understand EVERYTHING you said. Afib has robbed me of 20 years of living life to the fullest. I also am on the quest to find a solution. Read my first post from yesterday as we are much alike. [www.afibbers.org]

I suggest you find the top cardiac electrophysiologists in your area, verify they take Medicaid, and make an appointment for evaluation ASAP.

It seems that in San Francisco, a very expensive town, the top people at CPMC take Medicaid, including Dr. Natale. I would assume that since they have to practice in a hospital, almost all EPs do.

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Lone paroxysmal vagal atrial fibrillation. Age 62, female, no risk factors. Autonomic instability since severe Paxil withdrawal in 2004, including extreme sensitivity to neuro-active drugs, supplements, foods. Monthly tachycardia started 1/11, happened only at night, during sleep, or when waking, bouts of 5-15 hours. Changed to afib about a year ago, same pattern. Frequency increased over last 6 months, apparently with sensitivity to more triggers. Ablation 6/27/13 by Steven Hao.

Hi Kittymama..

Of course this is the right place, the very best place, to share such feelings and frustration. Most everyone here knows exactly what you are talking about and is either in the process of getting a better handle on their AFIB and minimizing its influence in their lives, or have already done so and have, for the most part, put this beast of a condition in their rearview mirror and yet still contribute here precisely because we understand how depressing and full of despair one can feel when it just keeps going on and on even after trying so many things, and yet we know feel well that you can get better with some real patience, knowledge, dedication and making good choices ... and this can very much happen for you as well, in spite of how hopeless it can feel at time.

Iatrogenia is right as well, as she often is, you cant just assume the better ablationist don't take Medicaid. With your apparent extreme sensitivity to supplements and magnesium in particular only tolerating 150mg orally, you should try topical Magnesium which will not cause anywhere near the bowel intolerance issues as oral forms can for some people.

Ancient Minerals brand is very good and widely available at many health food stores and I particularly like Magnesium Infusion which is a very good topical form that doesn't leave much of a sticky residue at all on the skin and is very absorbable,

There is a book out on topical Magnesium as well with guidelines on using it but use at least 25 sprays twice a day of Magnesium Infusion which delivers 20mg per spray.. Also order the larger bottles of Ancient Minerals form or their bath flakes form to use in a tube soak for 30 minutes for a bit boost in intracellular magnesium and a huge help in a good night sleep it that is an issue for you as well as eliminating leg cramps etc.

It is very possible, if not likely, that you will also benefit greatly from an expert ablation from the best EP you can find. Dont give up just because it looks like the ones in you immediate area that take Medicaid are not among the best. Don't be shy about traveling for a few days to get yourself into the hands of the best Doc,

Call CPMC or Austin if that is closer to you and try to set up and appointment with one of the very best EPs at either locatiion.

It is not nearly so bleak as it may seem right now.

Take care and keep your chin up,

Shannon

I live on SoCal, and there very few EPs listed in the Medi-Cal directory; Medi-Cal reimbursements are horribly low, so very few doctors participate. At any rate, I wouldn't trust a Medi-Cal EP to go anywhere near me. Medi-Cal docs are among the worst, at least around here.

I live in SoCal, and Medi-Cal (CA's version of Medicaid) will not reimburse for any care outside of network, unless its an ER visit. The thought of ablation gives me an anxiety attack, esp. since it's not 100% successful. Don't want to get in the cyle of procedure/touch-up repeat procedure. Medi-cal is extremely restrictive in terms of specialists; it's for the bottom-of-the barrell patients like myself who cannot afford decent care.

I will follow up on your suggestions re: topical Mag. that seems to be the way to go.

Kittymama - to save money, you can consider Epsom Salts baths or foot soaks (magnesium sulfate). You will absorb some magnesium. Making the homemade magnesium bicarbonate water will also help add a very beneficial form of magnesium and at the same time bring that all-important alkalinity to your tissues. That's also very economical. Just start with very low consumption at first.

Jackie

Kittymama, what kind of AF are you experiencing? e.g number of episodes and duration. Do you use any medication to stop the AF (like Flec). When you're 65 Medicare will pay. Maybe that is far too long to wait. What about moving to a different state? Just throwing out some (probably zany) ideas

Sorry, duplicate with next message. Ignore this one.



Edited 1 time(s). Last edit at 12/18/2013 03:21AM by Murray L.

Curious as to whether or not there is a residency requirement for Medicare? I am an American living in Ontario where medical is free and even drugs are free for those with low income. Now they are apparently talking about even adding basic dental to the OHIP plan (Ontario Health Insurance). The TIKOSYN I take is no charge except the $11.99 dispensing fee once every three months.

We want to move to stateside in a few years and we will be 65 but we will not have held US residency for some time. US Citizen, moving back to USA and taking up residence in, say, Arizona or Florida. Medicare?

Think about this at YOUR end. If you are truly desperate, think about moving into Ontario where the milk and honey run free. You will not be able to see Natale of course, but there are some very top notch EP's in the Toronto area.

MY CONCERN is, needless to say, when I move back stateside and make a home in Florida for at least half the year, am I going to be there without medical coverage? Or at 65, despite not having worked stateside nor resided stateside for some time, is Medicare going to kick in for me?

Interesting thought, from a different angle.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Murray, I copied this from Medicare.gov:
Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years or older and a citizen or permanent resident of the United States.

[www.medicare.gov]

Kmama -- If I were you, I'd direct my efforts towards finding the best possible EP and see if you can work things out with Medicaid.

The CPMC group is in San Francisco. Dr. Natale is also at Scripps in La Jolla [www.scripps.org]

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Lone paroxysmal vagal atrial fibrillation. Age 62, female, no risk factors. Autonomic instability since severe Paxil withdrawal in 2004, including extreme sensitivity to neuro-active drugs, supplements, foods. Monthly tachycardia started 1/11, happened only at night, during sleep, or when waking, bouts of 5-15 hours. Changed to afib about a year ago, same pattern. Frequency increased over last 6 months, apparently with sensitivity to more triggers. Ablation 6/27/13 by Steven Hao.

Kittymama, I'm right there with you, feels like AF has ruined my life right now too. Like Shannon said, use the caring people on this Forum for emotional support. Just wanted to comment about your stopping taking walks: I discontinued all exercise in July on the idea that it contributed to cumulative fatigue by the end of the day and thereby increased the chances of late day vagal episodes, and also on the idea that while good for you in other ways, exercise also causes oxidative stress which is one known afib trigger. But, my afib got worse anyway, and I missed exercise for the feelings of well being, psychological and physiological, it generates. So I got back into it two weeks ago and am so glad I did. My afib has not gotten any worse with exercise back in the picture and it is refreshing and uplifting. So, my advice is, unless each walk you take is putting you right into an episode, don't stop going for walks. They'll keep the heart-as-a-muscle healthy and help keep you from feeling like you're sinking into the doldrums. I made a mistake in stopping. Unless you have to stop for medical reasons, don't.

Randy

For a mere ten dollars one can buy bentonite and for a few more dollars one can also buy probiotics or for even less money can eat saurekraut and Kimchi, maybe some Kefir for probiotics. cut out chlorinated water never take antibiotics unless its life or death.Reestablish colon health and in time it may go way just as my 24 hour a day Afib did. Good luck to ya and remember that health care in this country is a for profit business and they think its OK to charge huge profits to destroy your life.

Kittymama - I don't know how Medi-cal works. However, like others wrote, don't assume that the top EPs refuse that coverage. Nademanee is the top gun EP in LA and his profile indicates that he will accept MediCal and Medicare coverage.

[whitememorial.com]