skyblu

Well I tried a mix of orange juice, water and salt. I think it'll do the trick although I find the orange juice to be a little too sweet even diluted with water. But OJ does have lots of Potassium so I guess it should work as well as the Gatorade. The only advantage of Gatorade is you can take it with you everywhere.

I think I might be allergic to the dye in Gatorade and was wondering if anyone had a recipe for homemade Gatorade. I was thinking orange juice with a little salt added might do the trick?

Thanks.

I drink both. And when I drink Gatorade I mix it with water.

I do OK when I eat fish so I think I'm going to stick with eating salmon a few times a week. I can't figure out why I can handle eating fish but can't take fish oil. Makes no sense. I'd be willing to try fish oil caps again if they made caps with less than 500 mg of fish oil.

I use enteric coated fish oil capsules. It definitely makes a difference. I was originally prescribed fish oil years ago for inflammation when I was nursing my son (now 15). I couldn't stay on them long term, due to the problems people have mentioned/ Going to the coated ones a couple years ago and spreading the dose out over the day made a difference.

The problem with a diet heavy in fish is mercury.

How many mg of fish oil are in the enteric coated ones? Glad they work better for you....I might try them if I can find a cap lower than 1000 mg.

I feel awful when I take fish oil too. My theory is that it lowers my BP, and then my sympathetic nervous system decides to bring it back up, but in the process goes into overdrive and my body has a hissy fit. Heart palpitations, high BP, gastro issues.....the usual fun stuff.

Maybe it would help to gradually increase the dosage but eating more oily fish, then one tablet, then increase to two etc?

I do OK when I eat fish so I think I'm going to stick with eating salmon a few times a week. I can't figure out why I can handle eating fish but can't take fish oil. Makes no sense. I'd be willing to try fish oil caps again if they made caps with less than 500 mg of fish oil.

I decided to try taking fish oil caps because they're supposed to help prevent migraines. I took one 1000 mg capsule for the first time with lunch today and got really dizzy afterward. The dizziness lasted around 4- 5 hours. I've read fish oil caps can lower BP but this was more of a vertigo type dizziness than my usual lightheaded feeling from low BP. Plus....my BP was fine. So who knows....I'm sure the dizziness was from the fish oil capsules and not just a coincidence.

Just a thought but Benadryl can cause unpleasant symptoms in some people. It does with me. I get shaky, I break out in a cold sweat and in general I feel very weird and creepy on it.

Actually, there are several of you with hacked accounts. I occasionally get similar emails in my dinet registration account; I usually email the owner of the account with a notification that their computer is either infected with malware or a virus.

Ernie has stopped in here occasionally, and has noted she's doing much better and that's why she's not around here much any longer.

Thanks...I just emailed her.

Sounds really scary. I once passed out in the shower and have come close to passing out after a shower. I think it's because of vasodilation which is a result of the water being too warm. Are you making sure your showers aren't too hot? I'm alone during the day and keep the phone by the shower and always near me just in case.

I received an odd email from Ernie this morning which leads me to believe her email account was hacked. The email said she was on England and she was requesting money to get home. I haven't emailed or called Ernie in years but I'm sure she didn't send this although it did come from her email account. If anyone on here still has contact with Ernie you might want to let her know someone has hacked into her email account and is sending out this email to her contacts.

Thanks

Thought this was interesting

http://www.cnn.com/2010/HEALTH/09/27/jordan.rania.treatment/index.html?hpt=Sbin

Jordan's Queen Rania undergoes treatment for irregular heart rhythm

By the CNN Wire Staff

September 27, 2010 2:24 a.m. EDT

STORY HIGHLIGHTS

(CNN) -- Jordan's Queen Rania was recuperating in a New York hospital Monday after she underwent a medical procedure to correct an irregular heart rhythm.

"The procedure went very smoothly and Her Majesty is well and in good spirits," the Royal Court in Amman said in a statement Monday.

She will remain hospitalized for two nights while she recovers before returning home later in the week, the palace said.

Rania was in New York with her husband, who is attending the United Nations General Assembly.

Rania's procedure involved placing a catheter through a vein to the heart. An electric current was then used to stop the disturbance of electrical flow through the heart, the palace said. As a result, the heart's normal rhythm was restored, it said.

The procedure is used to treat premature ventricular contractions -- extra, abnormal heartbeats that begin in the heart's two lower pumping chambers. These extra beats disrupt the regular heart rhythm, sometimes causing patients to feel a flip-flop or skipped beat in their chests, a definition on the Mayo Clinic's website says. The site says premature ventricular contractions are common and occur in most people at some point.

Most people with premature ventricular contractions and an otherwise normal heart don't need treatment.

sorry , havnt been on for a few days.

Mine started when i was about 15. Even when they first started they could go on for days and would make me breathless, headachy and dizzy. Back then i never really got it checked out. I went to a and e on one occasion but was in nsr by the time i got there. They suggested i went to my dr but as i wasnt in arrhythmias when i went he told me i was too young to have heart problems and that it was probably indegestion!! that put me off going to the dr again so i used to just put up with it.

Over the years the severity of it has varied and sometimes i can have months of continual bouts of it and then nothing for a few months, sometimes i get short burst and others longer theres no ryhm or reason to it really but i have been told that for me it will worsen with age but i dont think thats the case with svt on its own? Ive no idea what affects it but i know stress is a huge factor and time of the month to and i stopped caffine which helped. I just have to be careful to look after myself.

I was finally diagnosed after collapsing at work (as a nurse in a hospital)and was put into hdu when my ecg showed an irreglular heart beat of 230!!

Medication help me to a degree. Even after all these years there is an element of fear when im having bad bouts but in a way it does get easier and you find little tricks to help you cope.xx

Wow...it must have been very scary to have experienced an arrhythmia and to have been so symptomatic at such a young age. My cardiac issues have developed gradually. Started with PAC's and PVC's in the early 90s' but they didn't happen that often. Through the years it's definitely gotten worse. I think I started getting PATs in 2000. Or maybe I always had them and wasn't aware of them. I went into an afib during a sinus surgery in 1998...they had to stop the surgery until they got my HR under control. It was during the part where they pack your nose with lidocaine or something similar. The anesthesiologist came up to me when I was in recovery and told me I really gave them a scare. LOL...I was so sedated during the surgery I don't recall being afraid.

I can also go months with no cardiac symptoms as well...no PAT's or PVCs and then they start up again in full force. I guess all I can do for now is to wear event monitors sometimes just to make sure nothing else is going on.

sorry , havnt been on for a few days.

Mine started when i was about 15. Even when they first started they could go on for days and would make me breathless, headachy and dizzy. Back then i never really got it checked out. I went to a and e on one occasion but was in nsr by the time i got there. They suggested i went to my dr but as i wasnt in arrhythmias when i went he told me i was too young to have heart problems and that it was probably indegestion!! that put me off going to the dr again so i used to just put up with it.

Over the years the severity of it has varied and sometimes i can have months of continual bouts of it and then nothing for a few months, sometimes i get short burst and others longer theres no ryhm or reason to it really but i have been told that for me it will worsen with age but i dont think thats the case with svt on its own? Ive no idea what affects it but i know stress is a huge factor and time of the month to and i stopped caffine which helped. I just have to be careful to look after myself.

I was finally diagnosed after collapsing at work (as a nurse in a hospital)and was put into hdu when my ecg showed an irreglular heart beat of 230!!

Medication help me to a degree. Even after all these years there is an element of fear when im having bad bouts but in a way it does get easier and you find little tricks to help you cope.xx

Wow...it must have been very scary to have experienced an arrhythmia and to have been so symptomatic at such a young age. My cardiac issues have developed gradually. Started with PAC's and PVC's in the early 90s' but they didn't happen that often. Through the years it's definitely gotten worse. I think I started getting PATs in 2000. Or maybe I always had them and wasn't aware of them. I went into an afib during a sinus surgery in 1998...they had to stop the surgery until they got my HR under control. It was during the part where they pack your nose with lidocaine or something similar. The anesthesiologist came up to me when I was in recovery and told me I really gave them a scare. LOL...I was so sedated during the surgery I don't recall being afraid.

I can also go months with no cardiac symptoms as well...no PAT's or PVCs and then they start up again in full force. I guess all I can do for now is to wear event monitors sometimes just to make sure nothing else is going on.

Interesting to read this thread. I'm in my 50's and looking back each decade of life I think I've had periods where heart dysrhythmias had been worse and times where they've been not so bad. But it is consistent since my teens that I do get irregular heart rates. I too do not have POTS. I get as you the plummeting B/P when standing too long on occasion. This comes with symptoms of 'lay down or fall down' type feelings. Recently the holter showed short runs of PAT. No more than ten beats with each occurence. I believe it is Premature Atrial Tachycardia - where there is 'one' focus of contraction that is making issues and not many varied spots in the atria. PAC's - premature atrial contractions I believe can come from multi-focal areas. There was some other ectopy as well PVC's and such with an average heart rate of 100.

Less than a year prior while trying to 'work' as a home nurse my heart would just fly for no reason - I'd get off a patients couch and sweat would be pouring off my face. I grabbed the pulse-ox off the patients finger and slipped it onto mine and it read 140. I was like ??? Weird. Anyway I couldn't keep up with that job so had to leave it :-( I'm on treatment for being hypertensive most all the time. Seems the getting up out of furniture and out of bed causes surges of catecholamine and resulting rises in vitals...

I had all the dysautonomic testing and it came back really good - no issues. Not an entirely 'fair' test as I was on Diovan for blood pressure at the time - but nothing glaring stood out with the simple tilt, valsalva and sweat thing. The lying and supine norepinephrine showed a very robust rise from lying to standing - which I was not surprised at....

I truly believe my fight or flight mechanism is not quite normal. This causes labile b/p....I guess small fiber neuropathy can cause pooling in legs too. All throughout my life (but not in recent months) I'd get that super surge that would last usually 6 to 8 hours... I remember trying to sleep with bounding HR in my ears for no good reason -- I'm lying down for heaven sake! And sometimes in the night I'd wake up with it still going ... or wake up and it would be blessed gone and back to normal.

But the heart thing. My brother 2 years younger and I have always had bad times with lots of irregular heart beats...he went the EP route and ablation was mentioned as one way he might get relief. But the way ours will wax and wane in life - well it hasn't killed either of us at age 50 so I guess we 'deal'. Once his said ventricular tachycardia and they wanted him rushed to the hospital....I was so scared for him. He decides to 'do nothing' as 'my hearts done this forever'.....and well he's fine - but I still cringe and wonder if that was a mistake or a real thing.

Now I'm on a beta blocker. I still get the palpatations daily. But what's different is for the first time I'm with a heart rate in the 60's to high 50's all the time. I was never much under 90 before taking it. I've been ordered Clonidine to try for the labile b/p in addition to the diuretic and beta blocker but I'm holding off on that just yet....things are at a lull.

I do have hypermobility syndrome - yet not too much credence for my symptom group was given it recently (my fault as I pressed about current issues - not a life-long perspective) so I am going to see a specialist in Baltimore that deals exclusively with connective tissue disorders and maybe get a clearer picture about dysautonomia in my case.

Good luck to you....

Thanks for your input, Nowwhat. Yes...the ventricular tachy can be dangerous but fortunately it sounds like your brother isn't having regular episodes of them. Interesting both of you have cardiac issues. I go through bad and not so bad periods also. For example up until the past few months I was able to go through periods with no episodes of PVC's or PATS . But then I can also go through cycles where I'm getting PVC's all day long.

I know my attitude about them has changed. About 3 months after my brain surgery in 1995 I started having PVC's nonstop...all day long. I remember talking to my cardiologist's nurse who told me to avoid all triggers including alcohol. At the time I enjoyed some wine before dinner and refused to top drinking it. If I recall she told me I could end up in the ER and I just laughed it off. But the funny thing is the wine relaxed me and the PVC's actually deceased and stopped while I was drinking a glass of wine. Not being fearful of them back then was in someways a blessing as I sometimes think the fear can make things worse.

Skyblu can I ask what PAT's are and how they make you feel?

" SVT also is called paroxysmal supraventricular tachycardia (PSVT) or paroxysmal atrial tachycardia (PAT)". From Web MD.

When I get an episode it feels like my heart stops beating for a second and then I can feel it racing in my chest so fast that I doubt I would be able to count the beats on my pulse. Then it goes right back to normal beats. I'm assuming it's a PAT and not an afib becasue it feels similar to past PAT's that were documented on an event monitor. I don't get symptomatic because it doesn't last long enough. Afterward, my heart always feels a little funny. Like things aren't settled in my chest. I had one driving the other day and it shook me up enough so that I missed my exit and had to turn the car around. Like I said. I'm always afraid it's not going to stop.

I'm also having more episodes which concerns me.

I agree, its a very personal decision and im not sure that if i had svts that only lasted seconds that it would be worth the risks for me? My rhythms were lasting for hours/days and stopping me from functioning which was why i was advised to take that route. I would speak to an ep (electrophysiologist) rather than a cardiologist about it. As said above the diagnosis is usually confirmed by ep study just prior to an ablation as its quite invasive and if they are already in there and find something they might just as well ablate it whilst there (although some people may need 2 or 3 before successful).

I dont think you ever fully get used to the unpleasant sensations in your chest that arrhythmias bring but if you are reassured by the specialists that they are essentially harmless it makes them easier to live with over time? Sorry to soiund negative but sometiomes its better the devil you know then to add other new problems into the mix post ablation. x

Thanks..you bring up some good points a well and things for me to consider. Sometimes I think I'm more worried about ending up having the PAT's for hours on end and needing to take medication than I am about the actual episodes.. But yes...for now they're considered harmless and so far I'm not symptomatic when I get them because the episodes are so short. I can't even imagine what you went through with episodes lasting for hours and days. Was it always that way for you or did you start out with short episodes that got longer? You're not sounding negative at all....you're being honest and I appreciate it.

Lieze, my dad is completely pacemaker dependent and has an implanted cardiac defibrialtor as well (ICD). It's gone of quite a few times--and when his electrolytes aren't good, it goes off more often. He's had it for a few years now, and the battery now needs to be replaced. He describes the cardioversion as being hit in the chest with a baseball bat--it knocks the wind out of him, and it sometimes causes him to black out if it goes off a few times in a row. Nonetheless, he's living a pretty comfortable and happy life. I find it so ironic that he thinks I'm a hypochondriac, making up all that's going on with my health (because, you know it's all so fun that I'd want this all my life ) but now he has many of the same problems I do. He can't tolerate the heat, he can't stand for long, he takes a bunch of prescriptions each day and sees as many doctors as I do...

Okay, back to topic...sorry for my sideways rant about my dad...couldn't help myself...to Skyblu

ablation: how you do afterward is really an unknown for many of us. There are some people here who had such dangerous rhythms that ablation was an absolute necessity...and others who had it done before realizing it probably made things worse or provoked more symptoms than beforehand. The outcomes run the gamut, from people who do amazing well afterward to folks here reporting they're more debilitated and then the folks in the middle somewhere.

Not sure that helps much, but the issue is rather muddy--if you don't yet fully understand why you have dysautonomia (i.e. is it post viral, is it hypermobility related, is it something else on the long list of causes? If it were me I'd suggest due caution before letting anyone zap nerve bundles in my heart. Once they're gone, there's no going back.

Thanks Nina. You bring up some really good points. I don't know the exact cause of my dysautonomia. I have been a fainter since childhood but back then it was only if I stood too long or had a fever. Otherwise I was perfectly healthy...athletic and didn't give the fainting too much thought. Back then I thought it was because I had low blood sugar. In 1992 I started getting some cardiac issues... PVC's and some minor tachycardia. Again...not a big deal as I was assured they were harmless. I continued on with my life and physical activities and did nothing different except avoid things like cold medicines and too much caffeine.

In 1995 I had brain surgery to remove a benign tumor that was located pretty deep in my brain. I think that's when the dysautonomia kicked in because I was never the same afterward and have been on a slow decline since. Most of my docs believe the brain surgery caused it but they don't know why. The cardiac issues appear to have gotten worse since the brain surgery so it's hard to know what's tied into what. Or perhaps I'm just more distressed by the cardiac issues now. It's hard to sort it all out.

Yeah...I can't imagine what it would be like to have to deal with going into afib or atrial flutter on a regular basis. My step brother who is in his late 50's had an incident of atrial flutter out of the clear blue that lasted for several days before he drove himself to the ER. They had to keep him over night although I'm not sure how they got his HR down because getting info out of him is like pulling teeth. In fact I'm not even sure it wasn't an afib. Anyhow he didn't seem anxious or upset by it. He was on meds for about a year and was able to continue running and going to the gym. He was told it could happen again but he's not concerned. I wish I could be more like him and not worry about what might happen.

I've become so used to my PVC's that while uncomfortable they don't freak me out anymore. Unless I go through cycles where I'm getting them all day long.

I'm hoping I'll eventually get used to the PAT's as well. If my cardiologist had a crystal ball and he could assure me the PATs will always be benign and never last longer than seconds I'd probably feel less concerned about them.

I started having PVC's and irregular HR several years before I got dysautonomia. Which is why I wonder if it's a separate issue and how much of it is caused by the dysautonomia.

Thanks Lieze. Hmmm. the EP study even without the ablation sounds kind of scary. Actually when I have an episode of SVT my HR is up pretty high..too high to count. They've documented episodes on an event monitor and all they've said is that they're impressive. \ When I said my HR can go up to 90 I was referring to resting HR not when I'm having an SVT episode. I can be tachy and still be in regular rhythm. LOL... I know 90 isn't tachy for most of you but because my resting HR is low when it goes up to 90 for no reason it feels uncomfortable.

It sounds like the ablations only help with some of the problem and I could very well still have PVC's and some erratic HR even after an ablation because of the dyautonomia. This may sound silly but I'd love to be able to have a cup of coffee like I used to or even a beer without worrying I'm going to trigger an SVT. Kind of a stupid reason to consider an ablation. I guess it wouldn't hurt to meet with an EP but after hearing about both your experiences I'm now not so sure I want one.

I hope your friend is doing is OK...is she someone who used to post on here?

Thank you both for sharing your stories.

sj75, I'm so sorry your POTS is worse since you had your ablation. And that it didn't get rid of the arrhythmias. I wish your outcome could have been better.

Lieze...the sensation you described about your heart stopping then taking off is exactly what happens to me. I'm always so relieved when the fast HR finally stops. Like I said ...it only lasts seconds but it feels like forever and I'm always afraid it won't slow down on it's own. I've gotten so used to PVC's but this is much scarier in my book.

A few questions for both of you. Is there a way for them to diagnose extra pathways before the ablation? Also..is the recovery after the ablation for someone with dysautonomia longer than for someone without ANS issues? What kind of post procedure side effects and issues did you have that got better with time?

I can't believe I've gotten to the point where I'm even considering an ablation.

Thanks again.

I have dysautonomia but I don't have POTS. I do have OI but my HR never goes up much more than 25 -30 beats. My BP sometimes crashes if I stand for too long. My BP is erratic but typically it runs low. I do get spikes on occasion. I was on Florinef from 2001 -2003 and had to stop because it spiked my BP too high. I'm currently not on any meds except Ativan for sleep. My resting HR is between 52 and 64 although it sometimes gets in the 80's or 90's for no reason. I have to avoid most things with stimulants like coffee, alcohol and certain meds. I'm OK with one cup of weak tea. I go through periods where I get a lot of PVC's and lately I've been getting more PATs. Because the episodes don't last for more than 12 seconds my cardiologist isn't concerned about the increased frequency of the PAT's.

I'm starting to wonder if I should consult with an EP to see if an ablation would make sense. I know they can make dysautonomia worse but I'm wondering if that's just with people who have POTS? Has anyone on here had an ablation. I'd like to hear about your experience...if it helped or made things worse.

Thanks.

I have been having a lot of issues with numbing shots too. I get the kind without epinephrine but it still makes my heart race. Usually about 3 or 4 minutes after the injection my heart rate starts flying and I get the urge to get up and move around (it's hard to sit still when your heart is racing). Then about 10-15 minutes after the injection my heart rate comes down some. I think the kind of med I get is mepevicaine (sp?). It doesn't numb as well or as long. I had it with a root canal and I needed a second shot of it before he could finish the procedure.

One thing that helps me some is a dose of Benadryl. It doesn't really help my heart no to race, but it relaxes me some.

I get the no eppi numbing shots as well (carbocaine) and I too have noticed my heart races when I first get the shot. I think in my case it's anxiety. I always end up needing a second shot before the procedure is over but it beats having novocaine.

Interesting. I smoked regularly from about age 13 to 20. The funny thing is that I never really liked it all that much and would often feel "sick' afterward. Like I was about to pass out. I'd get lightheaded and weird from it. I think I kept trying to like it and kept on doing it because all my friends did. Years later I read it can cause low blood pressure which was most likely the reason I was having a problem with it. I have been a fainter my whole life and using a substance that lowers BP was the last thing I needed. I wouldn't smoke it now if you paid me.

I have more question but only let me post 3???

Anyway this is just brainstorming and researching I'm a bit compulsive about causes.

Thanks for participating

I'm at an age (53) where everyone I know smoked marijuana in high school and college. If marijuana were the cause of dysautonomia then lots of people would have it.

Does it help taking the pills with food or not really? They wanted me to take 2g at once, but it comes in 1g pills, so maybe now hearing your replies, I'll just start with one and see. If it doesnt work, i cant try the broth thing. I forgot about the chicken broths being high in sodium. I have and old bottle of those chicken bouillon cubes, but they are probably loaded with additives.. Trader Joes might be the way to go if the pills dont work out.

thanks everyone

I was told at Mayo to always take salt with your food and the best way to do it is is put a lot of salt on your food. You don't need salt tabs. Before I went to Mayo I was doing salt drinks which a doc in Denver recommended. The docs at Mayo said the salt drinks were useless, that salt won't be absorbed properly unless it's taken with food.