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JLB
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Hi, everyone. This is my first post here, so to fill you all in:

I've had trouble with irregular heartbeats for going on 15 years now. They've gotten more frequent in the past few years. Dx: Anxiety, every time - can't get any other diagnosis. Was on Xanax intermittently through the past 4 years, which did nothing more than calm me enough to let me sleep in spite of the symptoms. All tests have always shown my heart/lungs, etc. to be completely healthy.

About a month ago, I began feeling the irregularities much more often and more strongly. (They were at least manageable until then.) I went to the ER, where I was hooked up (as always) to a monitor, and they did the usual portable EKG thing, which was normal - however, when I was in the room by myself, I'd get up off the table and watch the monitor. Upon rising, my pulse would go up 30+ points, and the irregularities would begin. (I wanted to get those on the monitor for future reference.)

The ER doc gave me a small dose of Lopressor, and enough extra to last a week - for a few days, I felt like a new person. Then the bottom dropped out. Irregularities returned around the 4th day (while still on the med), then a fainting episode one morning, and the paramedics were called. I didn't go with them to the hospital because I knew I'd be dismissed. But by that afternoon, my h/b was so irregular that my husband called them again and they took me to the ER - I spent 2 hours there on a monitor (but the portable EKG "looked great" according to the ER doc). The continual monitor, however, recorded literally hundreds of PVCs and pair/PVCs, plus arrythmias, in that time. The doc told me in the end that he doesn't believe in treating PVCs, to go see a cardiologist (BTDT), and I left.

I've spent the past 3 weeks in misery. Dizzy, hundreds of PVCs daily - some of which are as bad as the day I went with the paramedics, they can shake my entire body.

It's especially severe when I get up in the morning, when I rise after sitting or laying down, when I cough or sneeze, many times when I swallow, and always absolutely intolerable when I try to eat, especially solid food. I dread it and I have to force myself. I get so exhausted I walk around with my eyes half closed.

My previous MD won't give me a referral to the only doctor in the area who knows anything about this - because it's 'just anxiety'- so I'm looking for a new PCP. In the meantime, does anyone have any advice for me? Does anyone else have this problem with eating? I'm cutting out sugar, etc., resting as much as possible, trying to keep my stress levels down. I'm upping my liquid intake a lot, and force-feeding myself nutritious foods, but I hate it. Has anyone ever heard of an inability to eat being an aspect of this problem?

Thanks in advance -

J

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Hello and welcome to the forum!

Some people with dysautonomia do have problems after eating. For some, it can lower their blood pressure too much, which is called postprandial hypotension. There may be other (yet to be discovered) mechanisms going on as well.

Have you checked out the "what helps" page under the POTS Place section of the main DINET website? There are some things that patients have found helpful listed there. You might also want to check out the "what to avoid" page. By just discovering things that helped and things to avoid my health improved greatly. I know it is hard to make diet changes at first, but once you do it you will get used to it. It's been almost 6 years since I've eaten a candy bar, brownies or any type of sweets. I feel MUCH better without them, and now I don't even want them anymore. It just takes time.

I hope you can get a new doctor who will refer you to the specialist. I don't know what type of insurance you have, but with mine I actually don't need a referral to a specialist, I can just go. You might want to check and see if there is any way you could see the specialist without a doctor's referral. Even if it means you may have to pay a little more, it might be worth it.

Take care,

Michelle

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Definatly, when my symptoms are at their worst I dont even want to look at food. The reason that you seem to have more problems around the time that you eat is because your blood rushes to your gut to aid in digestion. I am not sure if you have read too many of the other posts on the board, but I would definatly get a new dr. If you have to go to the er again, see if they will give you a referal to the cardiologist. Do you urinate frequently? You might be loosing a lot of fluids. I drink gatorade to help with that. Also how is your blood pressure? I have a blood pressure monitor at my house to I can take it when I am not feeling well. You can buy them at the drug store. I hope that some of this info helps. Good luck. Dont give up.

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yes, I also experience terrible problems shortly after eating the first meal of the day especially. Mornings are always hardest for me. Blood pressure is at it's lowest in the AM and then if you eat something with alot of carbs or sugar, it causes extra digestion to occur which requires more blood in the gut to digest. In some people this can also cause a drop in blood sugar as well in carb sensitive people like me, it will raise your blood sugar then drop it again soon after (reactive hypogycemia) so along with the blood pressure being lowered at the same time, it can make you feel really crappy with increased tachycardia, brain fog, extreme fatigue and breathlessness making it hard to function until things levels out again usually about after lunchtime. Check with your doc first, but my doc had me try to eat protein only (for breakfast only), no carbs, no sugar what so ever, even juice was out in the morning to see if it made a difference. it made a big difference on how I felt, although it didn't take it totally away. the severity of it was improved about 50%. Although, it's a hard thing to do because I'm a BiG carb eater, especially potatoes, breads and LUV juice in the morning. I make sure I take my midodrine just before eating to help things and then eat salty pretzels with alot of fluids.

Good luck and know your not alone. Personally, I never do anything physical or anything that requires alot of mental decisions in the AM, I do alot of my things at night when I feel better and have more energy.

Best wishes to you

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Hi -- I hope you're able to get in to see a cardiologist soon, especially one with an interest in--and knowledge about--the autonomic nervous system. It would be helpful if they could put you on a 24-hour holter monitor so your irregular rhythms could be tracked throughout the day. You should also get a tilt table test, which is used to diagnose POTS.

Everyone's suggestions are right on the money -- and I'd recommend reading as much as you can here and on the ndrf.org web site as well so you become as educated as you can before your next doctor's visit.

As for your diet, are you able to track which foods trigger the worst symptoms for you? Or is it the same no matter what you eat--or how much? People here tend to feel better with fewer carbs (esp. pasta and sweets) and foods with lower glycemic loads (eat a piece of fruit instead of drinking juice).

Until you get to see a doctor who can try you on some of the various medications that may help you (and you can read about them--and other people's experiences with them--on this site), you may find that wearing compression hose, 3-5 grams of salt daily (salt tablets may help you achieve this goal--I take them) and 2 liters of fluid may help to some extent.

Good luck; I hope you get some relief soon.

(PS I sometimes have the symptoms you describe after eating...but it depends on what it is.)

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I know what you are going through. I have had the very same problem with symptoms getting far worse after eating. I think it is b/c blood pools inappropriately to the abdomen after eating for us. There must be other things going on too, but I don't know what! Eating large meals, eating first thing in the AM, eating simple carbs--all seemed to exaccerbate my symptoms when they were at their worst. What helped was: time--over time my autonomic system repaired/re-set itself; other than that: drinking a lot of fluid when I ate, or only taking fluids, particularly in the AM; eating high protein, small meals; cutting out sugar entirely from my diet.

Keep posting and best wishes to you.

Katherine

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Thanks, everyone - this really helps.

As for your diet, are you able to track which foods trigger the worst symptoms for you? Or is it the same no matter what you eat--or how much?

Same, no matter what or when. Last night was a disaster. Went out to dinner, was having a little trouble but I thought I'd be able to manage it. As soon as I started eating, it felt like someone was hitting me over and over again in the chest - I got dizzy, began to panic. We had to leave right after our dinner arrived.

I'm wondering if I'm going to be an invalid. I'll NEVER go out to dinner again - what a terrible memory last night is. Today, I had a couple of "decent" hours this afternoon, but dinner was, again, horrible. B)

Some good news, though: I got a call from the neurologist I wanted to see. My PCP suddenly decided to send him a referral! My appointment is on August 16th.

If anyone has any suggestions for how to present my problems to the neurologist so that I'm as thorough - and calm - as is possible, I could use the help there as well, and I'd so appreciate it. My husband is going with me to help me relay what's happening to the doctor, but anything anyone else can add would be very helpful.

Thanks again, very much, for the responses. They mean a lot.

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Michelle said:

Some people with dysautonomia do have problems after eating. For some, it can lower their blood pressure too much, which is called postprandial hypotension.

I checked that out. It was interesting to me, that it actually recommended a little coffee to help the blood vessels work properly - I had cut so far down on caffeine, but after the restaurant fiasco last night, I came home and tried a cup of coffee. It seemed to relieve a lot of the PVCs (or whatever those were.) Seemed to do the same after dinner tonight, to some extent - didn't get rid of it entirely, but seemed to make it much more manageable. Wanted to thank you for that reference. :)

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Have you been diagnosed?

What helped me when I was seeing doctors to get a diagnosis was to keep logs of symptoms--kind of like a diary. It also helped me realize that cutting out sugar and increasing fluids during meals (refined sugar, btw, not fruits) might help.

Do you have a way to check your blood pressure at home? You might want to purchase a blood pressure cuff and measure your hr and pressure sitting and standing in the AM and again in the PM over a period of time. This could help determine a POTS/NMH diagnosis. Also it might be helpful to know what your hr and bp are doing when you have episodes like what you had last night at the restaurant (not that it is feasible or necessary to walk around in public with a bp monitor!).

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No diagnosis yet . I've been researching it for several weeks, and the neuro thinks, from the symptoms, that it should be looked at ASAP. Apparently, he's had some experience with dysautonomia/POTS/MVPS. I hope he's good at this stuff, because it seems like no MDs around here have a clue about it.

That diary idea is excellent - thanks. I'll start one tonight. (Haven't had a regular heart rhythm for hours now, and I'm just losing my mind here.)

You know, if I'd had a BP cuff last night, I would have used it. :)

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Hi Just read your post. If you need a good bp machine, walmarts sells a wrist band type bp machine that actually keeps numerous bp readings and heart rate readings in memory. That way you can show the physician what the readings are when this is occuring to you throughout your day along with your diary of symptoms. Have you had a TTT done yet? That should show if you have a autonomic problem. Good luck and best wishes.

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JLB-

Just read your post. My husband has POTS and he too has problems eating. Last year he was in & out of the hospital no less than half a dozen times. He lost about 15 lbs. due to not being able to eat. Not good when you are 6'3'' and weighed a mere 145 lbs. before he lost weight. So, loosing more weight wasn't a really good idea. Get yourself some Boost or Ensure. That's what helped to get him through. Lots of nutrition. Let me caution you though that this isn't a meal replacement. It's a supplement. The nutritionist working with us was very firm about that. But it was very helpful when he just couldn't get anything down. Try small meals throughout the day. Don't sit to eat a regular meal. My husband would "snack" sometimes all day just to get something in his stomach. You might want to consider less meat in your diet. We are mostly veggies, but we do eat poultry & fish. He would have just maybe an ounce, not even sometimes. He started supplementing with nuts because he could snack on them throughout the day. His chief "complaint" if you will, was that the palpitations were so bad after he ate - along with the lightheadedness etc. He also took a multi vitamin twice a day instead of once when he wasn't able to eat. I think it's a great idea that your husband comes with you to your appointment. My husband was so weak that if I didn't go, he wouldn't remember some of the conversation he would have with the doctor. I think that having someone as your health advocate is a good idea no matter your health condition, but it's especially important when you are having health problems.

One other little side note, I know what you're going through at the hospitals and having the doctors dismiss you. I can?t tell you how many times before my husband was diagnosed that the doctors told us it was anxiety. :) You do need to see a cardiologist. Even though the neurologist might be able to get the ball rolling, he will probably tell you to see a cardiologist. Ours did. My husband has finally ended up with an EP cardiologist that has been so helpful. However, that was after he was diagnosed with POTS. Before that the EP cardiologist(s) we saw - I wouldn't recommend them to treat a sick puppy. B) In doing the tests, my husband also has PVC, PAC, atrial flutter, tachycardia and a long list of other problems. Ask about getting a 24 hr. monitor. That should be very telling to the cardiologist. Good luck! B) Let us know how it goes.

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Hi, welcome! I too have LOTS of problems with arrythmias and tachycardia after eating, even just the smallest of thing like a half a sandwich, or a salad, etc. The food also makes me extremely "full" or bloated for hours. I get dizziness with the irregular beats and/or tachy, and I also get short of breath. Unfortunately what I have done is resorted to eating soft foods(mashed pot, mac and cheese, etc) but even those foods bother me. Lots of times I will drink a slimfast or protein drink instead because I know if I eat what is going to happen :( That's bad when you can't even eat without symptoms. Good Grieeeeeeef!! I understand where you are coming from completely. I have lost quite a bit of weight lately(I am at 116 now) but I can't help it. Sometimes I do "force" myself to eat something solid(in little portions) cause I know I need to but then the irreg beats and/or tachycardia always set in.

I also have the very irregular beats many many times a day. I have had them for years sometimes worse than others-lately on the worse end. And each and every time they freak me out. I always either get into a full blown panic(if they are bad enough and I can't breathe or if they are coming every other beat etc) or I get instant anxiety at some level-all depending on the severity of my symptoms, where I am and what I am doing, who I am with, etc.

It's like being a true prisoner to your own body. Don't know how to break the cycle(I have been in this cycle for 19 yrs-I am 37) But like I said, different stages at different times.

Didn't mean to rattle on, just wanted to let you know you aren't alone. I know that helps me out when I feel "different" or not sure if something I am feeling is a POTS thing or not.

Please keep us up to date on what is going on with you and your Dr's appts. Can't really give any suggestions there other than make sure you write everything down you are feeling and want to ask AND be assertive enough to make sure that all of it is gone over with you before you leave the Dr's office. ;)

BTW-my meds are atenolol(for my HR) and clonazepam(for my anxiety)which works when it wants too!!

Good luck, hope to hear more from you soon!

Danelle

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I have to tell you, one of the most uplifting things about this forum is that you all are so open and eager to assist and comfort, when so much is going on in your own lives. I can't tell you the comfort I'm getting here, although I'm so sorry for all the sadness and frustration that was experienced in order for all of you to gain all this wisdom. I'm very grateful.

I will DEFINITELY be looking into that BP monitor - I have 3 weeks until my appointment with the neuro, and I think that would be a good thing to talk with him about.

Danelle, you and WifeofPotsMan's husband sound EXACTLY like me. I'll see what the neuro says about a cardiologist, and I'll be sure to keep everyone updated. Had a horrible time of it last night - was up with palps until after 2 - but after a rough start this morning, I managed a trip to the mall to take my daughter shopping - did okay, praise God.

Just seemed like a victory, although I know it's a small one. Wanted to share it. ;) (But I suppose the small things are what make up a life...?)

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JLB,

I ws wondering, do you ever get the feeling with these irregularities that there is a machine gun firing in your chest or the feeling that all of the sudden it's a BUNCH or premature beats in a row? I do and it makes me lose my breath, makes me dizzy and scares the crap out of me!! It will happen regardless if I am up moving around, sitting on the couch, or laying in bed. It even wakes me up at night, now that is scary!!

Like I said, I have had these sx for years, like you, but they have gotten worse lately. Now I am afraid to go ANYWHERE without my husband and I am afraid to be home alone. I have had the ER trips as well but it seems like the ambulance takes forever to get here(actually we have timed them-average is 6-10 minutes) I'm just afraid that I am going to die when this happens and I don't know how to shake the overwhelming fear and panic that has taken control of me. Sometimes if I cough I can control it, sometimes not. It feels like there is a rollercoaster ride going on in my heart sometimes(literally).

Anyone else with this problem too??????????

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...do you ever get the feeling with these irregularities that there is a machine gun firing in your chest or the feeling that all of the sudden it's a BUNCH or premature beats in a row? I do and it makes me lose my breath, makes me dizzy and scares the crap out of me!! It will happen regardless if I am up moving around, sitting on the couch, or laying in bed.

You're describing exactly what happens to me. I've gone for hours and hours that way, until I'm absolutely exhausted. It's at its worst when I eat, but it can last all evening after dinner. I'm dealing with it right now, actually.

The ambulance came for me at the end of June - I couldn't even get up. The monitor recorded continual PVCs and irregularities, but they just sent me home - the doctor said he "didn't believe in treating PVCs." No matter how bad it gets, the last thing I'm going to do is go to the hospital at this point. :unsure:

You know, I could see that I was becoming agoraphobic, and I've found that venturing outdoors for a few minutes has something of a calming effect. Do you ever try that? Another thing I watch carefully is my breathing. Several deep, cleansing breaths can take the edge off. I actually had dinner last night with minimal difficulty (but tonight was a disaster. :( )

Have you read The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide? It's excellent. I ordered a couple of other books, too - the information is reassuring, and the suggestions are great.

You're right, it's pretty scary. From what I'm learning, most people aren't aware of their heartbeat, they just experience the dizziness and the panic but don't know why - guess you and I are the kind who are able to feel it. :(

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Thanks for the reply :D I hate to know that you are going through this too but it is nice to know that I'm not alone. I just wish I could shake the overwhelming terror when this happens. It's like over half of my life I live in complete terror of this thing and I am sick of the fear. I do try and go outside sometimes when it isn't too hot but for the most part, I stay inside just waiting for it to happen again :rolleyes: I know that sounds ridiculous and it is hard for me to admit but it is my truth and my world for right now. :)

About the BP cuff, it is an excellent idea!! I have one too(I am a nurse too) but I recommend the manual ones. The ones that you have to listen to yourself or have someone else take it for you. They are cheaper but MUCH more accurate. I have actually done a little study on this myself(maybe I should say trial). I tried both on several people on many different occasions and there can be a big difference in readings between them. SOme of the things that can cause the automatic ones to be inaccurate are movement, clothing, heartbeat on the weaker side, being or becoming miscalibrated, etc. This is just FYI stuff. But thought I would pass it along!! :D

Wishing your heart a nice slow, regular rythym,

Danelle

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