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hayley
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Hello everyone. Im here for advice.Well im having problems at eating time.I have to eat at certain times because if i dont i feel sick, headachy shaky and dizzy basically i feel terrible.It seems now that when i eat it takes the symptoms away for about an hour then they come back. im waking up at 11.00pm feeling terrible and then again a 7.00am feeling shaky it feels like i have to eat all the time i cant keep eating like that and im loosing weight.Its getting worse im fed up of feeling ill all the time .its like when you havent eaten for ages and you feel terrible but i get it all the time.I dont know what to do.I have a doctors appointment next week as he is trying to figure out why i pee more than usual, do i bring up up or just live with it.Im exhausted aswell and fed up as you may have guessed.oh and im having extra heartbeats ,i usually get about one a day, i had 13 in 2 hours yesterday not sure why.

sorry for moaning like always

thanks hx

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Hi, Haley

Did you ever have your potassium levels checked?

Low potassium makes you feel weak, sick, you are not able to concentrate your urine and may need to pee a lot, and can give you arrythmias. Suggest it to your doctor if he has not tested for it--and _don't_ make a fist or pump your hand for the nurse before she draws your blood, or your potassium level will be falsely elevated.

Low serum potassium sounds like something that needs to be ruled out.

Best wishes,

Warmly,

Pam

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hayley--I'm so sorry about your symptoms. When my POTS was very bad I had these same symptoms. I had to eat every hour or I felt terrible. My doctor recommended increasing salt and fluid intake with meals and adding a bit of fat to my meals (e.g., butter). The fat helps lessen the swings in blood sugar that could be causing some of the symptoms. Also, he recommended cutting out any added sugar (except from fruit)--even fruit juices should be eliminated. These things helped improve my symptoms. If you haven't tried any of this, you might consider trying it and see if it helps.

I also agree with the above post that your symptoms suggest that you could be having trouble retaining sufficient potassium right now. Try to eat particularly potassium rich foods--there is probably a list somewhere--but fresh fruits usually are rich in potassium. When my symptoms are bad, I have trouble with bananas--it must be the sugar content, I don't know--but I find eating fresh grapefruit can be helpful, for example.

Take Care,

Katherine

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I found this on this website--this looks like a good list

http://www.barttersite.com/potassium_page.htm

I think the #s presented are mgs. Anyway, looks like a couple tablespoons of molasses a day may be helpful!

Take care, Katherine

FOODS THAT ARE RICH IN POTASSIUM

Kellog's All Bran 532

Dried Apricots 454

Pinto Beans 531

Baked Potato 593

Orange Juice 479

Nabisco 100% Bran 354

Cantaloupe 412

Kidney Beans 452

Baked Winter Squash 590

Grapefruit Juice 360

Bran Flakes 251

Prunes 353

Lentils 374

Baked Sweet Potato 528

Tomato Juice 552

Shredded Wheat 155

Banana 338

Black Beans 309

Spinach 440

Tomato Sauce 459

Raisins 225 (3tbs)

Avocado 510

Canned Beans 332

Peas 296

Blackstrap Molasses 1218 (2tbs)

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Hi, Katherine

Thanks for the list of potassium-rich foods. If anyone becomes seriously potassium deficient, intravenous therapy and immediate hosptialization may be required. It is good to do everything we can for our health through diet, but with these symptoms it would still be important to speak to a doctor and rule out a possible potassium depletion which is beyond what diet is able to address.

I don't mean to frighten anyone, but there are some conditions which cause potassium loss even with supplementation and if the potassium drops low enough, it can lead to death. Very few people experience these low-potassium states, but they need to be ruled out.

Frequent vomiting or diarrhea can lead to lethal potassium losses under some conditions. So can the use of diuretic medications which deplete potassium like hydrochlorothiazide. In addition, there are a few genetic disorders which unbalance the electrolytes fairly routinely.

I have hyperaldosteronism, which is a hormone imbalance, and the two most common signs are uncontrolled hypertension and low potassium. Low potassium can make you feel extremely sick with muscle pain and weakness and even lead to temporary states of paralysis, called periodic paraylisis. I've been there, and it makes you feel so lousy you can't believe it.

Hayley, I wonder why you say you are losing weight while reporting that you are eating all the time. Have they ruled out diabetes? I don't mean to alarm you, but I hope you don't attribute the cause of all your symptoms to POTS. Something else could be going on, too.

Warmly,

Pam

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Guest tearose

Oh hayley, I am sorry you are going thru this!

It does sound like a pots "spell". I get bladder issues and trouble eating when I'm like this too!

It may help you to take even smaller amounts of food when you eat. Sometimes I could only manage three tablespoons of hot cereal or applesauce once an hour. Try to think of a shake mix that appeals to you too. Yes, bring up the frequent pee issue! You never know, you might have a bladder infection! And for sure all this can wipe you out so naturally your little ticker is working harder too! Mention all your concerns in a calm way and be confident! You have better things to do with your time than have to go to the doctor and complain so let him/her know you want better! Next week probably seems far away to you right now, try to picture yourself feeling well enough to get to that appointment!

wishing you better days, tearose

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Pam--thanks for the elaboration on potassium deficiency. It is a very good point. And you are so right--any new symptoms, particulary anything severe--like weight loss, feeling very weak, etc, should be addressed with a doctor as soon as possible to rule out anything else besides another bad bout of POTS.

I am often very slightly potassium depleted when I feel ill with POTS (know this from blood work in the past). Eating potassium rich foods helps relieve this problem for me, and lessen the symptoms -- that include feelings of weakness and frequent ectopic heartbeats.

hayley--hope you are feeling better soon and that your doctor can quickly rule out or identify anything else besides POTS that could be could be causing you to feel so badly right now.

Katherine

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Hayley,

Will you please share with us what you are eating? It would be good to list an entire day's menu and what times you ate. That may help us to help you via dietary suggestions.

The potassium connection is certainly important, but be aware that too much potassium in relation to other things can also cause some of those same problems - I've been there and still continue to work with that.

I've also been there with eating every 90 minutes - sometimes even more often. I did that for a few years yet still could not gain an ounce. Once I learned how to eat according to my body's needs, this has not been an issue.

As for the bladder trouble, it could be a number of things. Barring an infection or other such difficulty, it could be that you do not have enough "weight" to the liquids to keep them in your system, even if you are chronically dehydrated. After a few months of adding cell salts to my water, this is no longer a problem for me. And something else that had worked (prior to the cell salts) for the multiple middle-of-the-night bathroom trips was taking parsley capsules.

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Hi,

This sounds like a real problem. My doc said that I should expect to see a 5-10 lb. veight gain. To eat 6x day. I really think you should call your doc and ask if you can get the things needed for a 24 hr. urine now so next week they will have the results.!!!!!!! You can pick the stuff up at the lab. That will also tell if your electrolytes ar imbalance. I also would try sugar free gatorade. After 24 hr test. Always eat ehen hungry andkeep the fluids up up up. I'm worried. Please let me know how you are. Everyones insights are expert and we need to remember the one thing that is true for all is the 24 hr. urine. I for one would like to lose weight, but when I do its something bad, so I am happy to be me. And since losing weight is probably not wise at this point eat,(no carbs just complex) and drink.

Miriam

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Thankyou everyone for your replys.Your all so kind.I keep forgetting what im going to say.Oh yeah i remember, maybe it is POTS i dont know its just getting worse i havent been treated for POTS yet ive had it for over a year.I thought symptoms were supposed to get better by now not worse most of the time i feel like im dieing.Its soo frustrating.

i havent been checked for potassium or diabetes theres alot of diabetes in my family.I just find it hard going to the doctor because i dont want them to think i actually like going to the doctors if that makes sense but im getting desperate now i cant live like this anymore.

My lifes been on hold for a year.im tired again um um oh yeah i keep forgetting. If i cut i sugar there isnt really much else to eat i like chocolate maybe i eat to much chocolate ok im rambling on now anyway thanks so much.oh yeah its not easy getting my doctor to do tests.

thanx hayley x

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Thankyou everyone for your replys.Your all so kind.I keep forgetting what im going to say.Oh yeah i remember, maybe it is POTS i dont know its just getting worse i havent been treated for POTS yet ive had it for over a year.I thought symptoms were supposed to get better by now not worse most of the time i feel like im dieing.Its soo frustrating.

i havent been checked for potassium or diabetes theres alot of diabetes in my family.I just find it hard going to the doctor because i dont want them to think i actually like going to the doctors if that makes sense but im getting desperate now i cant live like this anymore.

My lifes been on hold for a year.im tired again um um oh yeah i keep forgetting. If i cut i sugar there isnt really much else to eat i like chocolate maybe i eat to much chocolate ok im rambling on now anyway thanks so much.oh yeah its not easy getting my doctor to do tests.

thanx hayley x

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hayley

Of course you can't live like this anymore! And you probably don't have to. I am concerned that you say you have been diagnosed with POTS, but not treated. Is this because your doctor is not familiar with the condition? Have you been evaluated by a specialist--either an electrophysiologist (my personal first choice) or a neurologist or possibly an endocrinologist.

POTS CAN just get better on its own, but it can also get worse before it gets better, or perhaps not really get better until you start a treatment regime. If you are getting worse, you really MUST see a doctor who can help you with treatment--my opinion. I know some folks on here have had bad experiences with modern mainstream medicine and would disagree, and I respect that. But, many of us have experienced vast improvement with medications, diet changes, or other treatments, usually under care of a medical doctor. Please don't be afraid to go to a doctor. You are armed with a diagnosis, for one thing!

Let us know what you decide to do. I know how hard it is when you are feeling so so badly to find the energy to get help. In the meantime, I hope you can try some of our suggestions, too.

Katherine

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I got diagnosed with POTS in april 2004.I got put on beta blockers but they made me worse so i came of them.I than saw a POTS specialist in august who wanted me to go into hospital for tests.I went in hospital in november 2004 and im still waiting the results the secretary wont give me them.I had a letter to say ive got to go back into hospital.the waiting list is six months not sure why noones telling me anything.so im waiting as usual.

Il try some of the things mentioned thankyou

hayleyX

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Hi hayley

Now I remember your situation from your previous posts--sorry. It sounds like a big part of your problem is navigating the medical bureaucracy in your country (the U.K.)? I hope you have someone--a family member/friend who can help you with this daunting task and it won't be too much longer before you can get your results and start trying some different treatments under the care of a specialist.

In the meantime, I do hope you'll try some of the dietary suggestions to see if they will help ease your symptoms a bit. There are also other non-medicinal routes to try--like compression hose.

I'll be thinking of you and hoping for your improvement!

Katherine

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Hayley,

In not so many words, you seem to have said that you eat a lot of sugar. If that's the case, that may be a reason why you are feeling so badly. Have you tried cutting out sugar completely -- eating just fruits and vegetables, dairy, meats, rice/whole wheat, etc.? That step has helped many here, including myself. I always have more fatigue and feel worse when I eat sugar. I lately have been able to eat naturally sweetened stuff, like muffins made with juice concentrate or rice syrup instead of sugar, and these don't set me off too much. It seems like highly processed foods can make us worse, and I don't know exactly why.

Also, just wanted to say I have unintentional weight loss too. And I had a 3,000-calorie diet at one point and was still losing weight. I now have about a 2,000-calorie diet and can keep my weight stable with this. I have had virtually every potential cause ruled out, so for me I don't think I'll ever know what happened. But you should surely get these causes ruled out -- it is not normal for those with POTS to lose a ton of weight. Some here do, but many others don't. If your doctor isn't cooperating, find another one. If that isn't possible, just be straight with him/her and say you really have never had a problem with weight loss and that this is very abnormal for you.

Good luck,

Amy

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:) Sugar isn't in EVERYTHING!!!!! Our diet usually consists of protein, complex carbs (fruit) vegetables some can eat dairy, and SALT and WATER. It could be that you dont have the right volume of blood and thats why you are losing fluids. If chocolate you must eat and don't we all. Dark very good choc is best, its strong and fulfilling so you waon't want much.

AS FOR YOUR DR> how does he know this if you don't go and keep telling him about it. I truly believe that for some going to the doc is an outing. It is for us, a very tiring outing needed to stay functional. Go back until someone takes you seriously........Remember you are your own advocate right now. If you MD doesn't know much guide him to the NDRF website, while you are there aor copy info, so you don't have to wait. I wish you strength. Miriam

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I understand where you're coming from, because I don't think I could ever cut out sugar completely. But most of the things I eat are very healthy - fish, chicken, fruits, veggies and multi-grain breads. So when I eat a little bit of chocolate or a cookie, it doesn't have any effect on my symptoms.

You are right that sugar is in a lot of things, but simple carbs and refined sugars are a lot worse for you than complex carbs and sugar that is naturally found in things like fruits and veggies. Too much sugar isn't good even for healthy people. But it is even more important to watch what you eat when you have POTS, because eating sugar can cause the blood to rush to your stomach and make POTS symptoms worse. You may want to try limiting your sugars and eating more protein to see if it makes a difference. I have been surprised at how much this has helped me. It has really, really made a difference.

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I second what Rita said. There are really a lot of foods available to you that don't contain sugar ... rice, pasta, whole grain breads, most vegetables, meats, legumes (beans/split peas and such). It's OK to eat sugar if it's in a natural form, like fruits or vegetables. And chocolate is probably OK occasionally if you are able to do it in moderation.

I know you don't have a great appetite and things don't always sound appealing. You should make your changes gradually and try not to shock your system. You really need to be eating well if you have POTS.

I'll light a candle for you, in hopes that you may kiss the chocolate goodbye and start eating a good diet!

Amy

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hayley

Here's a link to a thread in which we shared easy recipes, most of which would be considered healthy (and I believe all are sugar free). Maybe this would be helpful. I know it is hard to eat well if you are not feeling well, don't have the energy to cook, and food is generally not appealing. Healthy doesn't have to mean unappetizing, though. Maybe you'll find some easy recipes here that you can use.

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=1384

I also agree with what everyone has said above--go ahead and splurge on a little chocolate (dark might be better) if it is something enjoyable to you :P . But, you might want to otherwise try to cut out processed food with added sugar.

Good luck. Changing your diet can be very challenging. A diet is a habit and habits can be very hard to break, even when they affect our health.

Katherine

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